Evaluation of the Carer Education Training Project

(CEWT)

Final Report

Completed for Alzheimer’s Australia

by Applied Aged Care Solutions

AN AUSTRALIAN GOVERNMENT INITIATIVE

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Acknowledgements

Applied Aged Care Solutions would like to acknowledge the assistance provided by family carers, respite workers and managers in completing the evaluation materials. Many family carers also gave their time for in-depth telephone discussions some 4-months after they had participated in the course. The dedication and commitment of family carers to the people they support provides us with the inspiration to continue our work in this area. We would also like to thank Alzheimer’s Australia CEWT staff who assisted us with our many discussions and the time-consuming and demanding data collection tasks that are a necessity if any program is to be properly evaluated. We would also like to thank the staff from the various Carers Associations around Australia that also participated in discussions on the CEWT program. Richard Rosewarne Managing Director Applied Aged Care Solutions

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Table of Contents Executive Summary ................................................................................................... 7

1. CEWT Program Overview .................................................................................................................... 7 2. CEWT Course Description .................................................................................................................... 7 3. Evaluation Methodology ....................................................................................................................... 8 4. Course Preparation and Design.......................................................................................................... 10 5. CEWT Program Activity (July 2002 – June 2003) ............................................................................. 14 6. CEWT Course Participant Profile ....................................................................................................... 15 7. Course Delivery Modes ....................................................................................................................... 16 8. Course Details & Participants ............................................................................................................. 17 9. Role of the Carers Association ............................................................................................................ 18 10. Project Outcomes – Did the CEWT Course Work? ........................................................................ 20 11. Respite Services Views on the CEWT Course ................................................................................ 26 12. Did the CEWT Program Meet the Specified Objectives? .............................................................. 29 13. Did the CEWT Program Meet the Overall Objective? ................................................................... 30

Recommendations ................................................................................................... 31 1. Introduction .......................................................................................................... 37 2. Evaluation Methodology ................................................................................... 38

2.1 Overview ............................................................................................................................................. 38 Table 2.1: CEWT Course Participant Registration Information ..................................................... 39 Table 2.2: Data Collection Summary Overview ............................................................................... 41

2.2 Evaluation Tasks ................................................................................................................................. 42 Table 2.3: Summary of Tasks .............................................................................................................. 42

2.3 Data Collected on the National Data System.................................................................................. 44 Table 2.4: Number of Distinct People recorded on CSCM attending CEWT Courses (July 2002 – June 2003) ............................................................................................................................................ 44 Table 2.5: Number of People Contacts recorded on for CEWT Attendees ................................... 44 (July 2002 – June 2003) ......................................................................................................................... 44

3. Demographics & Program Activity .................................................................. 45

3.1 National Data ...................................................................................................................................... 45 Table 3.1: Respite Worker Courses - Number of Groups and People .......................................... 46 Table 3.2: Family Carer Courses - Number of Groups and people ............................................... 46 Figure 3.1: CEWT Courses - Number of Groups in The 12-Month Period .................................. 47

3.2 Evaluation Data .................................................................................................................................. 48 Table 3.3: Respite Workers Data Collection ...................................................................................... 48 Table 3.4: Family Carers Data Collection .......................................................................................... 48

3.3 Respite Workers .................................................................................................................................. 49 Table 3.5: Profession Of Respite Workers Who Completed An Evaluation Form ...................... 49 Table 3.6: Respite Worker Profession As Listed In CSCM (July 2002 – June 2003) ..................... 49 Table 3.7: Respite Worker Employment Location (July 2002 – June 2003) ................................... 50 Table 3.8: Dementia Care Experience of Registered Course Attendees ........................................ 50 Fig 3.2: Profession of CEWT Respite Workers (excluding “other”) by Site ................................ 51 Fig 3.3: Profession of CEWT Respite Workers (excluding “other”) ............................................. 52

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3.4 Family Carers - Demographics ......................................................................................................... 53 Table 3.9: Diagnosis of the Person with Dementia Supported by Carers ..................................... 53 Fig 3.4: Family Carers & Person with Dementia Health Status ..................................................... 54 Fig 3.5: Family Carers & Person with Dementia - Mobility Status ................................................ 55 Fig 3.6: Person with Dementia Activities of Daily Living Status ................................................... 55 Fig 3.6: Person with Dementia Activities of Daily Living Status ................................................... 56

4. Process Evaluation: CEWT Program Description ......................................... 57

4.1 Background ......................................................................................................................................... 57 4.2 Course Structure ................................................................................................................................. 57

Table 4.1 Course Modules ................................................................................................................... 58 Table 4.2 Course Outline ..................................................................................................................... 58

4.3 Typology Domains & Responses ...................................................................................................... 60 Table 4.3: Response Rate ...................................................................................................................... 61

4.4 Course Preparation ............................................................................................................................. 61 4.5 Role of the Carers Association .......................................................................................................... 64

Table 4.4 : Role of Carers Association in the CEWT Program ........................................................ 65 4.6 Qualifications of Trainers .................................................................................................................. 65

Table 4.5: Qualifications of Alzheimer’s Australia Trainers ........................................................... 66 Table 4.6: Qualifications of Carers Association Trainers ................................................................ 67

4.7 CEWT Program Annual Outputs & Site Developments Due to CEWT Funding ..................... 67 Figure 4.1: CEWT Course - Expected & Actual Outputs (unadjusted for rural/remote & CALD) .................................................................................................................................................... 68 Table 4.7: Course Outputs & Staff Resources due to CEWT Funding (2002/2003) .................... 69

4.8 Course Delivery Modes ..................................................................................................................... 69 4.9 Course Session Locations .................................................................................................................. 70

Table 4.8: Planned Session Locations ................................................................................................. 70 Table 4.9: Planned Session Times for Respite Worker Course ....................................................... 70 Table 4.10: Planned Session Times for Family Carer Course ......................................................... 70

4.10 Approach to the Target Audience .................................................................................................. 71 Table 4.11: Provisions for Special Needs Groups ............................................................................. 72 Table 4.12: Course Costs ...................................................................................................................... 73

4.11 Marketing Strategies ........................................................................................................................ 74 Table 4.13: Marketing Strategies ........................................................................................................ 75

5. Project Outcomes: Knowledge of Challenging Behaviour ......................... 76

5.1: Introduction ....................................................................................................................................... 76 5.2 Respite Workers .................................................................................................................................. 77

Table 5.1: Number of Respite Workers by State ............................................................................... 77 Table 5.2: Respite Workers Percent Correct at Time 1 and Time 2 ................................................ 77 Table 5.3: T-Test Of Respite Workers Knowledge Questions At Time 1 And Time 2 ................ 77

5.3 Family Carers ...................................................................................................................................... 77 Table 5.4: Number of Family Carers by State ................................................................................... 78 Table 5.5: Family Carers Percent Correct at Time 1 and Time 2 .................................................... 78 Table 5.6: T-Test Of Family Carers Knowledge Questions At Time 1 And Time 2..................... 78

5.4 Comparison of Results for Respite Workers and Family Carers ................................................. 78 Table 5.7: Knowledge Questions ........................................................................................................ 80 Fig 5.1: Respite Workers Knowledge Questions: Time 1 & Time 2 ............................................... 81 Fig 5.2: Family Carers Knowledge Questions Time 1 & Time 2Fig 5.3: Respite Workers vs. Family Carers Time 2 Comparison .................................................................................................... 82 Fig 5.3: Respite Workers vs. Family Carers Time 2 Comparison ................................................... 83 Fig 5.4: Respite Workers vs. Family Carers Improvement Index .................................................. 84

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6. Project Outcomes: Attitudes to Dementia Care ............................................ 85

6.1: Introduction ....................................................................................................................................... 85 Table 6.1: Question Domains .............................................................................................................. 86

6.2: Respite Workers ................................................................................................................................. 86 Table 6.2: Respite Workers Percent Correct at Time 1 and Time 2 ................................................ 87 Table 6.3: T-test of Respite Workers Attitude questions at Time 1 and Time 2 ........................... 87 Fig 6.1: Attitude Question Scores at Time 1 & Time 2 ..................................................................... 88

7. Project Outcomes: Course Satisfaction ........................................................... 89

Table 7.1: Summary of Response Outcomes (most positive alternative reported) ..................... 89 8. Project Outcomes: Impact on Caring for Family Carers .............................. 90

8.1 Introduction ......................................................................................................................................... 90 8.2 Issues that Impacted on Caring ........................................................................................................ 91

Table 8.1 Scale Used To Assess How Carers Were Affected By Particular Issues ...................... 91 Table 8.2: The Impact of Caring – Commencement & Completion of Course Results ............... 91

8.3 Rated Success of the CEWT Course on Specific Carer Issues ...................................................... 92 Table 8.3 Scale Used To Assess How Carers Were Affected By Particular Issues ...................... 92 Table 8.4: How Successful Was The Course On Assisting With…… (N=136)............................. 92

8.3 Family Carers at 4-Months Post Course Follow-up ....................................................................... 93 Table 8.5: Long term summary impact of how helpful course was (n=69) .................................. 93

8.4 Family Carers Feedback On ‘How The CEWT Course Could Be Further Improved’ .............. 95 9. Respite Issues ........................................................................................................................................ 96 9.1 Use of Respite ...................................................................................................................................... 96

Table 9.1: Extent of Respite Used ....................................................................................................... 96 Table 9.2 Type Of Respite Used .......................................................................................................... 96

9.2 How Helpful Was The Respite? ....................................................................................................... 97 Table 9.3: How Helpful Was The Respite ......................................................................................... 97

9.3 Effect of CEWT Course on Specific Aspects of Respite ................................................................. 99 Table 9.4: CEWT Course Informed About Respite Services? ......................................................... 99 Table 9.5: Comfortable Using Respite Services ................................................................................ 99 Table 9.6: Did Respite Lower the Stress of Caring ......................................................................... 100

9.4 Barriers to Respite ............................................................................................................................. 100 Table 9.7: Barriers Encountered With Respite ................................................................................ 100

10. Project Outcomes: Service Provider Feedback .......................................... 102

10.1. Introduction – Overview of Participating Respite Services ..................................................... 102 10.2. CEWT Course Feedback from Respite Providers ..................................................................... 103

Table 10.1: Respite Services Views on CEWT Courses Content ................................................. 103 Table 10.2: How CEWT Information Is Used Transferred ........................................................... 104

10.3. Future Development Suggestions by Respite Providers.......................................................... 105 11. Appendices ....................................................................................................... 106

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Executive Summary

1. CEWT Program Overview The Carer Education Workforce Training Project (CEWT) is a joint initiative of Alzheimer’s Australia and the Carers Association. The four year program was funded by the Commonwealth Department of Health and Aged Care in May 2001 for $1.4 million per year for four years. Applied Aged Care Solutions (AACS) was selected to conduct the Evaluation of the CEWT programs. The general objective of the CEWT project was “to improve access to and use of respite by carers of persons with dementia and challenging behaviour, by enabling the carer and service provider to better understand their own needs and those for whom they care”. Alzheimer’s Australia are primarily responsible for delivering the CEWT program by providing education services using an accredited dementia course competency unit (CHCAC15A), under the Vocational Education Training (VET) scheme. The use of an education program is aimed at linking workers, carers and services to achieve the stated objective.

2. CEWT Course Description The dementia competency unit CHC99ALZA (now CHCAC15A) is an accredited Vocational Education Training (VET) unit. There are six levels of VET qualifications which fit into nationally recognised qualifications from secondary school certificates, certificate 1 to IV, to Diplomas and Advanced Diplomas. The Australian Qualifications Framework body oversees all qualifications from secondary to tertiary levels. The VET scheme has multiple training packages which provide nationally endorsed standards and qualifications. The dementia competency unit comes under the umbrella of the Community Services Training Package (CHC99). The Training Packages are subjected to a quality assurance process before being endorsed by the National Training Quality Council (NTQC) and then placed on the National Training Information Service (NTIS) database. After this process, a qualified trainer can supply the unit. VET courses can be provided by secondary schools, new apprenticeships, TAFE and Registered Training Organisations (RTO). Many of the CEWT sites have become an RTO, while other sites delivered the unit under the guidance of an external RTO. The dementia competency unit is an elective in the Community Services Training Package which provides qualifications for workers in aged care and other community services. Course Structure There are eight modules in the course. The Respite Workers accredited course includes all 8 modules. The Family Carers’ course has a choice of two courses, a short course of 6 modules (which can be used towards completing an accredited course) or the Respite Workers accredited course of 8 modules. The Respite Workers accredited course has:-

• eight self-contained modules • 24 hours in total for 8 modules

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• given in various time blocks e.g. 2 hour blocks or up to full days • can be held over 1 day per week for 8 weeks or in the most condensed format, 3 days in one

week • Has two main formats - face to face and the emerging distance education • The costs are subsidised by the Commonwealth Government with Respite Workers paying

from $30 to $150 for the standard course • Recognition of Prior Learning investigation is costed at up to $850

The 6 modules which make up the Family Carers’ short course are Nature of Dementia, Effective Communication, Impact of Dementia, Activities for Living & Pleasure, Understanding Challenging Behaviour and Developing Effective Responses to Challenging Behaviour. If a Family Carer wants to complete a competency certificate then the extra two modules of Person Centred Care and Worker Issues & Support Services must also be undertaken. The Family Carers’ short course has:-

• six self-contained modules • successful completion can count towards an accredited course • 12 hours in total for the 6 modules • provided over 1 day per week for 6 weeks or in the most condensed format, 2 days in one

week (e.g. in remote areas where it is difficult to return every week) • Has one main format - face to face • The costs are fully subsidised by the Commonwealth Government

Each CEWT site developed individual presentations of the material under the guidance of the National meetings of the CEWT Managers, this covered development of education modules, assessments and marking guidelines.

3. Evaluation Methodology Applied Aged Care Solutions (AACS) evaluated the Carers Education and Workforce Training Project using quantitative and qualitative methods. The approach allowed for improvement as the CEWT program developed. The evaluation was across multi sites, with a repeated measures design, assessing a program run for family carers and respite workers. The evaluation covered areas associated with the following domains: Process Evaluation

o Program Typology (What are the various intervention aspects) o Program Processes (What was implemented and how, resource allocation, products

produced e.g. distance education package and CD ROM) o Program Reach (market penetration to target population, participant demographics) o Participant Satisfaction

Outcome Evaluation

o Participant’s knowledge and attitudes to challenging behaviour o Participant’s management of challenging behaviour o Understanding the needs of carers and the person with dementia o Access to and use of respite services o Barriers to the use of respite o Identification of “hidden carers”

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The evaluation was conducted in three phases: Phase One: In the first six months: Site visits were undertaken by the evaluators to introduce the evaluation approach and collect documentation about the program process Phase Two: Program outcomes were evaluated by the collection of information from CEWT course participants. Data describing base line information and immediate impacts of the course were collected (eg. participant satisfaction). Respite Workers completed a dementia knowledge questionnaire and vignette to assess what the participant’s knowledge and attitudes to challenging behaviour, challenging behaviour management skills, understanding of the needs of the family carer and the person with dementia. Family Carers completed the dementia knowledge questionnaire and qualitative information was collected on their caring role, access to and use of respite services and barriers to respite use. Phase Three: This involved telephone interviews focusing on the long term impact of the course with participants and interviews with staff to review the CEWT program. This included the follow-up interviews with Family Carers and Respite Service Providers via the telephone and CEWT staff from Alzheimer’s Australia, and Carers Association staff working on the CEWT program.

4. Course Preparation and Design Part of the preparation by the Alzheimer’s Australia CEWT national manager was to (i) undertake a literature review (ii) needs analysis, (iii) reach agreement on national standards and materials, and (iv) undertake and produce national resources. Each Alzheimer’s Australia auspice, apart from Tasmania, prepared site specific education modules. Literature reviews A brief review was undertaken nationally in Stage 1 of the CEWT project. New South Wales, South Australia, Victoria and Western Australia reported undertaking Literature Reviews to prepare for the course modules. Needs analysis A National needs analysis report was completed and Victoria, Western Australia and Queensland also undertook separate needs analysis for both courses. An extensive pilot of the two products was undertaken in New South Wales. Victoria also held focus group discussions on the program. National Resources NSW re-worked an existing video on “Brain & Behaviour” and produced a CD version. It was planned that it would be used in session one of the training course, and was made available for sale to CEWT course participants as an ongoing resource. It was available to all States/Territories Alzheimer’s and Carers organisations as a resource tool for the CEWT program. A paper based distance education package was developed by Alzheimer’s Australia – Vic and this became available during the evaluation period. This resource included a short video (10 minutes from “Speaking from experience”) and an audio tape.

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Education Modules Most sites developed their own education modules based on the nationally agreed content. National Standards & Material National Standards were developed by Alzheimer’s Australia for the Assessment Sheets and Marking Guides and all States and Territories agreed to use these standardised approaches. The assessment format included (i) journal entries (ii) in-class assessments and (iii) work based assessments. This approach reflected the assessments as prepared by the Registered Training Organisation for the ACT and included multiple forms of assessment. The national assessment guidelines comprised the following:- 1. Compulsory Written Assessments The Journal Entries are the only written CEWT assessments. There are seven journal entries covering:-

• The Nature of Dementia • Effective Communication • The Impact of Dementia • Person-Centred Care • Activities for Living and Pleasure • Understanding Challenging Behaviours & Developing Effective Responses • Worker Issues

2. In-class Assessment There are 11 tasks and guidelines that the student must complete. The format for this assessment is at the discretion of the workplace. For example, a student may have a non-written assessment for some tasks if they were having difficulty gaining competency in this task or if the trainer judged that literacy was insufficient to justify a written assessment. 3. Compulsory to undertake either a Workplace Assessment or Indirect Work Based Evidence (i) Workplace Assessment: The CEWT trainer must approve the workplace assessor’s qualifications and/or experience. The two Workplace Assessments cover:

• Communication (to demonstrate a given set of communication skills, assessor to tick a checklist)

• Challenging Behaviour (workplace assessor assesses written documentation of an actual episode of Challenging Behaviour by a person that the CEWT student was supporting. It is also to include a description of the situation, behaviour and intervention).

(ii) Indirect Work Based Evidence The CEWT student was to be observed demonstrating communication skills (same check list as above in the workplace assessment) at their workplace or in a volunteer situation if the student is not employed in the industry. Workplace Assessments The requirements of workplace assessments was indicated as a difficulty for some CEWT sites to resource and monitor effectively. Workplace assessments will only be available in the ACT, Western Australia, and by request in Tasmania.

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Assessment Formats Apart from the workplace assessment for demonstrating communication skills, the assessment sheets are primarily in written format. New South Wales, Northern Territory and Victoria are considering using audiotape materials as an option. In addition Victoria and Queensland will accept interview (i.e. verbal) based assessments instead of the assessment sheet format. Using this range of options, participants will be able to provide their assessments results in either or a combination of written, audiotape and oral formats for most CEWT sites. All sites reported that if the family carer chooses to do a full competency unit then they will be assessed with the same tools as the respite worker course assessments. New South Wales and South Australia indicated that family carers will be asked to attend the Respite Worker courses if they want to do a competency unit. Alternatively, Victoria is to use the Respite Worker assessments in the Family Carer short course for carers doing the full competency unit.

Alzheimer’s Australia Trainers All Alzheimer Australia trainers running Respite Worker’s and Family Carers Courses had the required qualifications for Workplace Training and Assessment. Alzheimer’s South Australia had separate trainers for the Family Carers course and these trainers did not have the Workplace Training and Assessment qualification. However, Alzheimer’s South Australia indicated that family carers are required to attend the separate Respite Workers course (where the trainers do have the Workplace Training & Assessment qualification) if they want to do a competency unit.

Carers Association Trainers Carers Associations provided the following trainer input:-

• Victoria and Tasmania have a Carer Association trainer for part of Module 3 in Respite Workers and the Family Carers courses, information was provided about their qualifications

• ACT and Queensland Carers Association trainers were considered guest speakers and were therefore not required to meet the VET requirement of Certificate 4 in Workplace Assessment and Training

Carers Victoria had two trainers, and they participated in the module “Impact of Dementia” for both the Respite Worker and the Family Carer courses. The Carers Association of Tasmania had two trainers (one in the South and one in the North of Tasmania) who participated in the module “Impact of Dementia” in both the Respite Worker and the Family Carer courses. While the four trainers from Victoria and Tasmania Carers had a Certificate IV in Workplace Training and Assessment by July 2003, they did not appear to meet the minimum requirements of project educators of at least 5 years clinical experience in dementia care. However, the Carers trainers were covering more generic carer issues areas focusing on the impact of caring covering relationships, feelings, needs and practical issues of ‘looking after the carer’. The lack of specific dementia care experience is considered less relevant in this context.

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5. CEWT Program Activity (July 2002 – June 2003) In the financial year of 2002-2003 there were:

• 84 Respite Worker Groups conducted with 1,196 Respite Workers (average 14 per group) • 50 Family Carer Groups conducted with 542 Family Carers (average of 11 people per

group) There has been limited use of the distance education package:

• 10 individual registrations reported in South Australia between February 2003 and April 2003.

• Western Australia reported that two group courses used the distance education pack • Victoria reported that the distance education pack has been used at least once.

The funding to Alzheimer’s Australia for provision of the CEWT program was provided by the Commonwealth Government over four years. This funding includes costs associated with national and state administration, Carers Association funding for their contribution (varies by state), staffing at sites, production of materials, promotion, advertising costs, travel, facility hire and other expenses covering program delivery. The number of courses and other activities to be provided by individual states was determined using a formulae based on “outputs”. It should be emphasised that the actual outputs detailed below are not adjusted for the rural/remote and cultural and linguistically diverse weightings, developed by the CEWT national management committee. This weighting will bring the “adjusted actual” in states such as New South Wales, Victoria, Queensland and Western Australia to a level more equivalent to the expected outputs. There were 134 CEWT courses run in the 2002/2003 period. As related to the funding received by each state Alzheimer’s Australia auspice, the following describes the number of actual (unadjusted for rural/remoteness & cultural and linguistically diverse clients) and expected (see below exp.) courses by state for the 2002/2003 financial year:

• New South Wales – 37 courses (27 respite worker – exp. 27; 10 family carer - exp. 16) • Victoria - 27 courses (15 respite worker – exp. 22; 12 family carer – exp. 16) • Queensland - 17 courses (7 respite worker – exp. 14; 10 family carer – exp. 12) • South Australia - 16 courses (10 respite worker – exp. 10; 6 family carer – exp 6) • Western Australia - 10 courses (4 respite worker – exp. 11; 6 family carer – exp 6) • Tasmania - 9 courses (8 respite worker – exp. 6; 1 family carer – exp. 2) • Northern Territory - 6 courses (5 respite worker – exp. 2; 1 family carer – exp. 1) • Australian Capital Territory - 12 courses (8 respite worker – exp. 7; 4 family carer – exp. 5)

Course Development & Content Generally Alzheimer’s Australia sites developed new courses (not a modification of an existing Alzheimer’s Education product) for the Respite Worker program. For the Family Carers program, New South Wales and South Australia added additional content to their existing educational programs. The video “Brain and Behaviour” was used as a resource to support the training program. Additional Staff Resources

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The ACT was the only site to employ a new person in a program manager role as a result of the CEWT funding. New South Wales used additional hours for existing management staff. The remaining sites used the program manager resources within the existing hours of employment. For staff directly involved with the training, all sites added additional training time for existing staff trainers or employed new or sessional trainers. Additionally, NSW, Victoria and the ACT added junior administrative staff hours to assist with the program. CEWT Course Costs Course costs per person varied across the States/ territories from $30 (Victoria) to $150 (South Australia). All sites did not charge Family Carers if they were participating in the 6 module course. Marketing Strategies All states used the general information sessions for marketing the CEWT program, and part of the role of State Carers Associations in every state was to actively promote the courses to family carers and service providers. Marketing approaches to lift consumer awareness used mostly traditional aged care networks such as promotions to staff from relevant agencies, distribution of course availability via newsletters, websites, promotional flyers and targeted mail-out programs to services. In terms of a strategic approach, the two largest states ‘segmented’ the market to allow a more focused approach. For example, NSW targeted community-based service providers and individual workers, Victoria used a rolling regional targeting approach to focus resources in defined geographical areas. As courses were generally over-subscribed, marketing approaches were conservative.

6. CEWT Course Participant Profile a. Respite Workers The most common type of profession reported in evaluation forms was Personal Care Assistant. Approximately 67% of participants were hands-on direct dementia care workers. Around 4 in 10 respite workers (39%) attending CEWT courses worked in residential aged care facilities. All sites except for NSW targeted both residential facilities and community services. The NSW CEWT program targeted facilities if they were the main respite provider in the region. The CEWT course represented the first contact with Alzheimer’s Australia for 88% of Respite Workers. Special Assistance According to the national database records, thirteen people requested special assistance due to ethnicity and there were no recorded requests for special assistance for disability or learning supports. However, marketing and promotional information indicates that some sites made special efforts to link with culturally and linguistically diverse communities. For example, NSW formed a reference group of special needs groups to assist with course development and targeting, Queensland collaborated with ethnic community groups and provide at least one course per year in a language other than English and Western Australia had involvement in information meetings held with the Chinese, Italian and multicultural communities. Recognition of Prior Learning One person was registered on the national database for recognition of prior learning.

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Dementia Care Experience of CEWT Attendees Around 25% of Respite Workers had 12-months or less experience, another 15% between 1 and 2 years experience, nearly 25% between 2 and 5 years and one-third (33.1%) had more than 5 years of dementia care experience. b. Family Carers A large majority of the family carers attending CEWT courses were caring for a person with dementia who had unstable health (78%), with nearly one third having had a recent hospital stay. Thirty-three percent of people with dementia related to carers attending CEWT courses were dependent on their carers for assistance with mobility. As would be anticipated with a person with dementia living in the community, they were more dependent in instrumental activities of daily living (i.e. using transport and shopping) compared to basic care requirements where they were mostly independent (bathing, dressing). In terms of behaviours of concern, around 40% of carers reported that the person with dementia had major behaviour problems. While the family carers were not as frail in health as the person with dementia, nearly one third had unstable health and one in ten had a recent hospital stay. Nearly all family carers were supporting a person with a diagnosis of dementia (90%). Alzheimer’s disease accounted for around 50% of dementia diagnoses. First Contact with Alzheimer’s Australia Services The CEWT course was the first contact with Alzheimer’s Australia for nearly 7 in 10 (67%) of Family Carers which is slightly less than for Respite Workers where 88% had their first contact with Alzheimer’s Australia via the CEWT course. These are important results as it shows that the CEWT course was attracting people (Respite Workers & Carers) that had not been in contact with Alzheimer’s Australia previously. If lack of contact with Alzheimer’s Australia indicates that the carer may have been ‘hidden’, it could be suggested that nearly 7 in 10 carers doing the CEWT course had been hidden from formal services focusing on dementia information and support. To broaden the ‘net’ on hidden carers further a targeted mass media campaign using television and radio will be required. This may be the only way to reach carers who do not have any connection with existing community or local government services, nursing supports or hospital programs. Living Arrangements The large majority (87%) of the people with dementia associated with carers attending the CEWT courses were living in a domestic setting, with their wife (44%), husband (19%), daughter (12%) or alone (12%). Culturally and Linguistically Diverse Background Over 1 in 10 carers attending the courses were from a non English speaking background (14%).

7. Course Delivery Modes The main format for CEWT courses is traditional face to face delivery, with distance education and video conferencing as planned supporting formats. The distance education package was perceived as requiring more promotion and additional resources to adequately market the product to the sector. There were also concerns that access to computers for workers and carers may limit the use of this resource, at least initially.

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Victoria, Western Australia and Queensland reported that they were planning in the near future to use delivery formats other than direct face-to-face training sessions. For example, audio and video conferencing were to be investigated and an on-line ‘internet’ course delivery is to be assessed. Paper-based distance education was reported as a possible format for all other Alzheimer’s sites. Three sites – Western Australia, South Australia and Victoria have used the distance package to train Respite Workers however the numbers are very small to date.

8. Course Details & Participants Locations CEWT courses (Respite Worker and Family Carer) were provided in locations from capital cities through to rural cities and remote locations in most states in the 2002/3 period. Session times were flexible and courses were held in morning, afternoon and evening timeslots. The preference was to hold the sessions (course modules) over a number of weeks to improve the assimilation over time of the knowledge gained in each session with on-the-job experiences. This proved impractical for Respite Worker courses in the more remote areas, and courses were often provided in full over a one or two week period. Family Carer courses were generally more spread-out over a period of at least 4-weeks.

Course Participant Criteria Overview All sites except New South Wales, targeted workers from residential and community respite facilities. Residential facilities were only targeted in NSW if they were the main respite provider in a region. The Northern Territory was also targeting other non-residential-based health professionals, Victoria included HACC workers, Queensland planned to include students wanting to work in the aged care industry and Western Australia were including family and friends as required. Victoria, South Australia and NSW had specific plans to target entire services (all relevant staff) and not individual respite workers in a location. In the ACT the Family Carer course participant must be caring for a person with dementia and challenging behaviour. In New South Wales the Family Carer course participant must be the primary carer; Northern Territory will include volunteers working with people with dementia; Tasmania, Queensland and Western Australia will extend participation to family friends who are actively involved. NSW reported a large demand for their courses and therefore the need to limit entry criteria to strictly cover only carers of people with dementia. Some other states such as Tasmania reported they needed to expand their target audience to maintain group numbers. Provision for Participants with Literacy Challenges & Special Needs The majority of the states (excluding the ACT and Tasmania) are offering some level of internal developed support for those with literacy issues. Queensland planned to offer verbal and pictorial assessments for those participants identified during the course as having literacy problems. Other literacy/language support systems include; a buddy system in Victoria, different assessment formats (oral, tape and interview in NSW) and unspecified different materials (NT and WA). In the ACT responsibility for literacy support is completed by their external Registered Training Organisation (RTO), ensuring participants will be assisted. In Tasmania people with severe literacy problems are directed to support services (eg. TAFE) and asked to reapply when their literacy skills have improved to a level adequate for course completion. No sites had a formal process for determining whether students had sufficient literacy skills to enable them to adequately understand the course materials and complete the assessments. This approach was believed too intrusive and

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sites preferred to assess the level of literacy at the first session and deal subsequently with any problems via special support approaches. Most sites, except South Australia, ACT and Tasmania, actively targeted people from culturally and linguistically diverse (CALD) backgrounds. Some sites made special efforts to link with CALD communities. For example, NSW formed a reference group of special needs groups to assist with course development and targeting, Queensland collaborated with ethnic community groups and provide at least one course per year in a language other than English, and Western Australia had involvement in information meetings held with the Chinese, Italian and multicultural communities. Sites targeting people from aboriginal backgrounds included NSW, Western Australia (consulted with an aboriginal liaison officer), the Northern Territory and Queensland (participating in a research program with Queensland health to design and deliver a program to ATSI, South Sea Islander communities and isolated/outback communities). Recognition of Prior Learning Assessments Recognition of Prior Learning (RPL) is where a participant asks to be assessed for recognition of their previous formal and informal experience. There are various modes of assessment available for RPL; by portfolio, challenge test or workplace assessment. The State project managers did not expect that many people would request RPL. The results from the data analysis indicated that only one person in the 12-month period to 2003 asked for RPL consideration.

9. Role of the Carers Association Alzheimer’s Australia received funding from the Commonwealth Department of Health and Aged Care in May 2001 to provide the CEWT training program and partner with the Carers Association and local Carers state organisations to improve the ‘uptake and use of respite services’. Through interviews and the typology pro-forma, the roles of the Carers organisations in the CEWT project were identified. The role and degree of involvement varied significantly from state to state. These variations were due to the degree of involvement desired by the different state Carers organisation, the resources available to the Carers organisation in terms of trainers and the co-operative relationships between the local state organisations. Almost all Carers Association sites had at least a promotional role with both the Respite Worker and Family Carer courses (except Carers South Australia which had no involvement in CEWT sessions, publicity or information sessions). Specifically the Carers Associations had the following involvement in the CEWT program: General involvement (i) In New South Wales, Victoria and Western Australia, the Carers Association is part of the local CEWT management committee. (ii) In Victoria, the Carers Association assisted in the CEWT course content development (eg. Carers Victoria assisted incorporate the emotional impact of caring for carers) and was involved in planning for the targeting of geographical areas most in need. (iii) In New South Wales and Western Australia the Carers Association are involved in course developmental aspects and participate in promotional marketing. (iv) In the Northern Territory the Carers Association assisted with course development aspects. Involvement in Course Delivery The Carers Association’s in Victoria, Tasmania, ACT and the NT also have a more direct role in the service delivery aspects of the program. This involved: (i) Carers Tasmania and Victoria provide course trainers for a section of Module 3 covering the “impact of caring” and “carer respite”. (ii) The ACT Carers and Queensland Carers are guest speakers (not trainers) in the CEWT course (regional areas only).

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(iii) Carers Northern Territory deliver a 2-hour training session in the Respite Workers and Family Carer CEWT Courses.

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10. Project Outcomes – Did the CEWT Course Work? (i) Dementia Knowledge Questionnaire The CEWT course targets many aspects of dementia care related to knowledge and understanding of behaviour. Some of the topics in the CEWT program relevant to this section include:

• effective communication • understanding challenging behaviour • developing effective responses to challenging behaviour

To assess the impact of the CEWT program on these knowledge areas, Respite Worker and Family Carer participants were asked to complete a series of nine knowledge questions that were targeted to areas that are considered fundamental to an understanding of behaviour and dementia. The set of questions were asked at the beginning of the first session (Time 1) and at the end of the last session (Time 2). The questions deal with areas associated with the carers (family and paid carers) understanding of the problem and whether they should (i) re-frame the problem so as to minimise the issue (ii) understand the underlying issue and develop an intervention that is applied to the person with dementia (iii) change the behaviour of the carer so as to impact on the expression of the behaviour. Respite Workers The great majority of course participants (64% excluding the non-specified category) were personal care or respite workers (i.e. not trained nurses). Around 25% had 12-months or less experience, another 15% between 1 and 2 years experience, nearly 25% between 2 and 5 years and one-third (33.1%) had more than 5 years of dementia care experience. Respite Workers improved on all questions at by the end of the course (Time 2). The improvement was statistically significant on all questions except questions 4 and 5. Further analysis was undertaken to examine the overall outcomes across all questions. The mean for all questions correct at Time 2 was significantly higher compared with Time 1. The significant improvement on seven of the nine questions and improvement overall on the number of correct answers at course completion (Time 2) indicates that the CEWT training course was associated with an improvement in the knowledge based of Respite Workers participants. Family Carers Carers attending the CEWT courses were supporting people with dementia mainly living in domestic settings. Attendees were wives (44%), husbands (19%), or daughters (12%). A minority of carers attending the courses were from a non English speaking background (14%). Family Carers improved on all questions at course completion (Time 2). The improvement was statistically significant on seven of the nine questions (not significant on questions 5 and 6). The overall mean correct at Time 1 versus Time 2 for all questions also showed a statistically significant improvement for Family Carers at Time 2. The significant improvement on seven of the nine questions and improvement overall on the number of correct answers at course completion (Time 2) indicates that the CEWT training course was associated with an improvement in the knowledge base of carers undertaking the course.

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Comparison Respite Workers and Family Carers on Knowledge Test Considering the overall percent correct on the knowledge questions, Respite Workers achieved slightly higher outcomes compared with Family Carers although the differences were small. It is interesting to note however that Family Carers improvement by Time 2 was much more significant than the Respite Workers. Family Carers improved more than Respite Workers on seven of the nine questions. Respite Workers improved more than carers on only two questions. Both Respite Workers and Family Carers significantly improved their level of knowledge of challenging behaviour as assessed by the Knowledge Questionnaire. While Respite Workers scored more percent correct answers overall at Time 2, in general Family Carers improved more from their exposure to the CEWT training. The CEWT course has been successful in improving the knowledge base of both Respite Workers and Family Carer participants. (ii) Attitudes to Dementia Care – Respite Workers The CEWT course targets many aspects of dementia care related to the development of responses to challenging behaviour and most importantly, the attitudes that underpin many of the responses of professional carers to dementia care issues. In this regard some of the topics in the CEWT program include:

• impact on the person with dementia • impact on the family carer • person centred care • effective communication • understanding challenging behaviour • developing effective responses to challenging behaviour

As it was not possible to observe CEWT course participants in the work place before and after the course to determine how they implemented their learning, a method had to be developed to provide some indication of the effectiveness of the course in addressing these complex areas. A short story (vignette) and series of questions was therefore developed. The vignette contained information directly relevant to the course content and the series of questions were designed to measure the effectiveness of the participants learning in these areas. The short story (vignette) is about an elderly couple and some of the issues encountered when a partner has dementia. The questions were designed to assess and ‘measure’ the attitudes and knowledge base of participants about dementia, challenging behaviour and dementia care management. The questions covered the following domains;

• Person-centred care (history, preferences, behaviour) • Profiles/background information (history, preferences) • Effective communication strategies (speech, communication, intimacy) • Interventions for behaviours of concern (appropriateness, night disturbance, agitation) • Activities of living and pleasure (activity) • Role of family carers (preferences, appropriateness, intimacy)

As for the previous Dementia Knowledge Questionnaire, the vignette and questionnaire was reviewed by an expert panel of academics and educators (both Australian and overseas experts) and piloted in a low care residential care facility with direct care workers. Changes were made to the wording of some of the questions to reflect the feedback from the expert panel and pilot investigations. The final version of the questionnaire appears in the Appendix.

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There were eleven domains with around five questions within each domain. In total fifty-three questions were rated across the domains. For example, in the domain on challenging behaviour participants were asked to indicate on a scale from strongly agree to strongly disagree, “How much do you agree with the following statements”:-

• People with dementia would be easier to look after if they didn't try to deliberately make life difficult

• People with dementia have the ability to behave differently if they really want to • The behaviour of people with dementia can't be changed because it's due to brain damage • Dementia causes people to behave in certain ways but we have the ability to reduce the

problems • It is not that helpful to try and understand why a person with dementia behaves in a

problematic way - this doesn’t really help us fix the problems The questions have been designed to promote further thought from the participants to discover the underlying principles of best dementia care practice. It should be emphasised that this exercise is a very difficult one for professional carers of any background. It requires a sophisticated understanding of the underlying concepts to achieve a high score. This questionnaire and vignette has been used in other contexts by AACS. Improvement in the percent correct index is not always achieved between the Time 1 and Time 2 assessments. Respite Workers All Respite Worker participants in CEWT courses were requested to complete this assessment at the beginning of the first session (Time 1) and the end of the last session (Time 2). The results show that the percent correct responses improved in ten of the eleven domains. The improvements ranged from non-significant minor changes in the domains agitation (1%), preferences (1.4%) and behaviour (2.2%) to larger statistically significant improvements in speech difficulties (5.1%), communication (4.9%), history (8.6%) and activities (9.7%). A further analysis combining all questions was undertaken to compare the mean total correct scores of participants at Time 1 and Time 2. The results supported the overall trend of improvement as there was a statistically significant increase in the percentage of correct responses at the end of the course (Time Two). The Respite Workers undertaking the CEWT course registered a significant improvement in the number of correct responses across the questions covered in the assessment focusing on attitudes and better care practices for people with dementia. In particular there were improvements in the areas covering:

• Social Profiles and background information (history, preferences) • Effective communication strategies (speech, communication) • Interventions for behaviours of concern (appropriateness – reframing problems) • Activities of living and pleasure (activity)

(iii) Course Satisfaction – Respite Workers and Family Carers Respite workers and family carers completed a satisfaction questionnaire (‘happy sheet’) at the end of the 6 or 8 week course to assess their general views on the general presentation of the CEWT course. These areas covered course services, course content, the course educators’ style and the

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impact on what they did back at the workplace or at home. While all areas were very highly positively rated the most highly ranked areas were:

• Course understandable (75% rated overall as ‘very understandable’) • Educators style (78% rated overall as ‘very satisfied’) • Opportunity to ask questions (77% rated overall as ‘very satisfied’) • Encouragement of discussion (79% rated overall as ‘very satisfied’) • The interactions with educators (81% rated overall as ‘very satisfied’) • Gained new skills (75% rated overall as ‘definitely yes’) • Understanding of behaviours (76% rated overall as ‘very much better’) • Recommended to others (88% rated overall as ‘definitely yes’)

The satisfaction ratings provide further confirmation that the CEWT course was highly regarded by all participants. Did the CEWT course help Carers with their Specific Problems? In addition to the evaluation of the knowledge gained by attending the CEWT course, Family Carers were also asked to rate the impact of the course on their specific caring situation. In terms of changes between the commencement and end of the course there were no consistent statistical trends with a reduction of how badly carers felt they were affected by their specific problems. The issues that were most of concern were rated similarly at Time 1 and 2. These issues were:

• Observing the ongoing loss of independence & skills (av.47% of responses for time 1 & 2) • Memory problems that caused distress for day-to-day care and support (av.45% ) • Burden of caring (e.g. stressed, constant reliance, no escape) (av.31% ) • Grief and loss issues (av. 29%) • Restlessness, anxiety or agitated behaviour with the person with dementia (av. 28%) • Disruption with personal or family relationships (av. 26%) • Irritability and argumentative behaviour (av. 25%)

However, when asked if they felt that the course assisted them generally with the management of behaviour, the majority of respondents (more than 50%) rated the course as having at least some degree of favourable outcomes with their specific problem areas. The successful areas were those associated with knowledge gained from the course that assisted carers deal with the ongoing deterioration and loss of skills. Sixty-nine Family Carers were additionally followed-up at approximately 4-months after completion of the CEWT course to determine if they felt the course helped them manage with caring issues in the longer term. Overwhelmingly, carers believed the course had been very helpful in the longer-term. Nearly 8 in 10 of the carers interviewed found the course ‘very helpful’ and nearly a further 2 in 10 found it ‘quite a bit’ helpful.

The specific areas that carers indicated as most helpful in the longer term included:-

• Knowledge or information about dementia & behaviour management suggestions (38% of responses)

• Coping, coming to terms with the inevitability of loss, changing your attitude to dealing with the future (20% of responses)

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• Sharing experienced during sessions - reduces loneliness, gives support & encouragement (19% of responses)

• Respite information was helpful – it provided knowledge; helped give ‘permission to try it and reduce the guilt associated with asking for this type of support ‘(8% of responses)

The knowledge and information that was provided was the most acknowledged aspect of the course and regarded as what provided the most long-term benefit – this is much the same as what was expressed at course completion. Information on dementia symptoms, progression and behaviour management assisted carers understand, plan and cope with the future. Carers also indicated the group sharing had a positive impact on their ability to cope.

It is essential to note that most carers involved in the course were dealing with problems, issues and adjustments that were changing over the period of the course and additionally many ‘new’ issues were emerging. These issues involved three key areas that provided a ‘theme’ through many of the interviews. These areas are: 1. The extreme difficulty of dealing with the ongoing deterioration of a loved one – the emotional and psychological effect on family members cannot be underestimated, and grieving continues for a long time and is renewed each time when the person further deteriorates. 2. Behaviour Issues: managing physical care is one aspect but the issues many spouses and their adult children found most difficult were the behaviours (eg. agitation, verbal abuse) exhibited in domestic environments. 3. Caring for the Carer: there was an acknowledgement that (i) carers were often not well enough supported by other family members (eg. one does it all), (ii) spouses were usually elderly with their own health problems and physical impairments and were often on the edge of being able to manage and (iii) the generational impact when a person with dementia is cared for by a daughter/son, their husband/wife and the grandchildren who are often growing-up and struggling with their own issues related to those typical of emerging adults. Given the complexity of the problems it was not surprising that while the course was rated in general by carers as very helpful most of the time, many of the specific issues related to caring remained or even worsened over the longer term. This is to be expected as the carers participating in the course were supporting people with a degenerative disease such as dementia and associated conditions. It must also be noted that many carers in the course were also of advancing years and that they also had a range of health problems and dependencies that placed changing demands on their ability to care. We received many comments such as “husband has deteriorated markedly since course and this has led to significant increases in problem areas”. The evidence provided by carers is that the course did materially assist them with their tasks but that their changing circumstances necessitates on going ‘individualised’ support to maintain the gains from the CEWT course and to provide a real belief that appropriate, accessible support will be available when they need it.

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Did The CEWT Course Increase Respite Use by Participants? There were three occasions when information was collected on respite use – at course commencement, completion and via a 4-month telephone follow-up interview. The data were used to investigate respite issues and the impact of the CEWT course on respite uptake. The carers who indicated they had used respite were asked to provide information about the type of respite they used (multiple selections allowed) over the three data collection periods. There were 304 carers completing information at course commencement, 175 carers completing information at the end of the course and 69 carers for the 4-month post-course follow-up. While it is likely that there was a degree of selection bias associated with carers receiving some form of respite more likely to participate at course completion (Time 2), it is still significant that in absolute terms, more people were using respite at course completion (Time 2) compared with course commencement ( n=77 versus n=98) . The increased use was due to an increase in informal family type respite and Formal in-home HACC/personal carer type respite services. HACC/personal carer type respite increased from 19 people at Time 1 to 35 people at Time 2. Overall, Home-based respite (formal or informal) showed the largest increase in use. This matches the information that one of the main barriers to using respite is the reluctance of the person with dementia to accept respite. Respite at home is more likely to be acceptable to the person with dementia because they remain in a familiar environment and it avoids some of the resistance involved in preparing, travelling and being accommodated in an unfamiliar location.

These results are not definitive because of the possible impact of selection bias. However the results do provide a consistent trend across the time periods with more people in absolute terms using formal in-home HACC type respite options at Time 2 in comparison with Time 1. It is likely that participation in the CEWT course assisted with the uptake of respite in these areas. Did The CEWT Course Inform Carers about Respite Services? At the 4-month follow-up interview, carers were asked to report if the CEWT course had been successful in increasing their level of information about respite services. Carers were very positive about the impact of the course on their understanding of respite services, even four-months after they had completed the course. Over 9 in 10 carers followed-up indicated:

• they had a better understanding of respite services since completing the course • they felt that the course taught them how to access respite services and; • the course provided guidance on the situations they might consider using respite for.

Were Carers More Comfortable Using Respite after The CEWT Course? Carers were asked at the 4-month follow telephone interview to indicate (i) ‘how comfortable were you before the course about asking for respite services?’ and then ‘how comfortable are you now about asking for respite services?’ Carers indicated they were much more comfortable about using respite services at the 4-month follow-up than at the start of the course. While 43% indicated they were either very or quite comfortable about asking for respite before the course, after the course 95% of carers indicated they were now very or quite comfortable about asking for respite. The results indicate that the CEWT course did have a very positive impact on the attitudes of carers toward respite. They were much more likely to ask for respite services after completing the CEWT course.

Did Carers Rate the Respite as Helpful? Carers also rated at the 4-month follow-up ‘how helpful was the respite they used’. All forms of respite (residential care, day care centres; informal at home by other family members; in-home HACC/personal carer type respite) were regarded as very helpful. A number of carers indicated

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that the CEWT course had encouraged them to start using respite because of their increased knowledge, awareness and decreased guilt associated with placement – they felt the course had helped give them ‘permission’ to use respite services. Effect of Using Respite on Carer Stress Levels Carers that had used a respite service were also asked to indicate if the use of respite had helped to lower any stress associated with being a carer. The responses indicated that most carers believed they were either much less stressed (58%) or less stressed after using respite (33%). Only 9% of carers indicated there was no change to their stress levels after the use of respite. A possible outcome of the increased skills carers have developed and lowered stress levels may be that carers are less likely to need to use respite. Therefore in some ways the CEWT course may operate to reduce the use of respite for some carers in the course as they will be managing better at home. What were the Major Barriers to Respite Use? Participants were asked about any barriers they had encountered in trying to use respite care. The major barriers as perceived by carers can be summarised as:- 1. Respite Service Issues – lack of availability, little flexibility in the times provided, and lack of staff expertise with the local respite service were the most significant factors. 2. Issues around the person with dementia – these issues accounted for a significant number of reported barriers by carers. The high level of resistance to respite by the person with dementia was the single most important barrier to respite use. The most common barriers involved the person with dementia resisting respite placement (e.g. ‘Mother doesn’t like enclosed areas and hates locked doors so “freaks out” in respite centres’). Carers therefore often preferred ‘in home’ services because then the person with dementia may be more amenable to respite in a familiar surrounding or with familiar people. Families also feel they have more control over the specific service that is provided when it is delivered ‘in-home’.

11. Respite Services Views on the CEWT Course

The Services Alzheimer’s CEWT sites were asked to provide a list of Respite Service Providers who had attended the CEWT course in the 2003 year for the evaluation. Services were then chosen at random and contacted about participation Thirteen Respite Providers subsequently agreed to be interviewed in depth via telephone with most interviews being held over two sessions comprising around 45 minutes in total for each service. The services were interviewed around 6 months after their ‘last’ staff member had attended a course. The service provider interviews indicated that a range of agencies have accessed the CEWT course and provided feedback for this survey. The respite services interviewed ranged from those providing respite beds in high, low, or secure dementia units through to those providing personal carers for overnight care in the client’s own home. The services provided respite services for a range of clients from different age groups, socio-economic and cultural backgrounds.

Respite Services Staff Five of the 13 services in the sample had sent five or fewer staff to a CEWT course. Three of the 13 services had sent between 6 and 19 staff, and five of the services had sent more than 20 staff. The respite service providers that participated in this evaluation aspect represented over 300

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individual staff members. The staff held a variety of positions from care workers with varying levels of qualifications (personal care assistants, enrolled and registered nurses), to service managers and coordinators and non direct care staff (domestic, kitchen, cleaning staff). The staff were expected to have a minimum of Certificate III and some provided in service programs for lifting, first aid and other care practice issues (5 out of 13). The level of spoken English of staff was formally assessed in six of the services and reading, writing and comprehension skills in five of the services. Knowledge of the CEWT Course Respite services heard about the CEWT course from distributed fliers and Alzheimer’s Australia advertising and informal networking. The service providers appeared to be very aware of the course content covering challenging behaviour and dementia. Fewer services realised that the course also covered information about respite services and some other aspects. No service provider interviewed was aware of the existence of the distance education version of the CEWT. Service Provider Views on the CEWT Course There was unanimous agreement from the service providers interviewed that the course was highly relevant and effective (100%). All Service Providers interviews were more than satisfied with:

• The scheduling of CEWT courses • The travelling distance to get to the courses • The style of presentation • How the CEWT programs were managed and run • The content and coverage of the CEWT course

Service providers consistently mentioned that staff reported that the presentation style was simple, specific and practical. The course was flexible because it was modified to meet needs of individual participants. For example, the use of verbal assessment for care workers that had a low levels of English literacy. Service Providers did not receive any negative comments from those staff who attended the course (as noted previously, the service providers interviewed had sent over 300 staff to the sessions). It was mentioned by some managers that a number of staff had been negative about attending the course initially as they felt it would not be of much benefit. However, these staff became convinced that the course was beneficial over the period of their attendance. Service provider managers frequently cited that the style on which the material was presented and discussed had been received very positively by participants. The sharing and discussion time was particularly welcomed by those supporting people with dementia and behavioural issues. Ongoing use of CEWT Course Material The information was reported as being transferred to, at least some extent, for other staff to benefit. The methods include the informal ‘word of mouth’ via lunch and morning tea times and discussions at staff meetings, through to the more formal approaches. These involved written information distributed and displayed on notice boards, buddy systems that paired staff who attended the course with others that did not and the nomination of the people that attended the courses as the service ‘resource person’. These approaches may assist with dissemination of information and promote broader learning in the organisations that participated in the CEWT program.

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Did the CEWT course improve knowledge, attitudes and management of ‘challenging behaviours’ for respite workers? All service providers reported that they believed the course had improved knowledge, attitudes and management of ‘challenging behaviours’ in their organisation. There were many positive comments about the impact on staff practices, indicating that the knowledge and attitudes are also demonstrated in new skills. For example there were comments that staff:

• “are learning to understand what is behind behaviours” • “are implementing strategies to reduce problems” • “attempt to use a range of strategies (distraction, redirection etc) now” • “look for triggers to ‘problem’ behaviours” • “are better at history taking and case notes” • “know what to look for when trying to assist with behaviours” • “know more about the disease” • “try and understand the persons needs” • “focus on positives and rewards” • “talk over the issues with other staff, medical people, family members” • “don’t take behaviour as personally directed at them anymore” • “understand the importance of referrals for expert help” • “are coping better with their job” • “feel more empowered and in control of difficult situations”

Managers of the respite services also commented that there were positive outcomes for the clients and families as the Respite Workers had increased their understanding of the needs the person receiving the respite and the associated family members. For example managers commented that staff were more likely to:

• “provide the client (person receiving respite) with choices” • “look for ways to improve the dignity of client” • “encourage families to be more involved in care planning and discussions with staff” • “try and understand the perspective of the family and person receiving respite” • “pass on any knowledge they have to families to help them better manage” • “refer families to other specialist resources” • “be generally more supportive of families” • “make attempts to improve communication with families”

Future development suggestions by Respite Providers Service providers were overwhelmingly impressed with the CEWT course and the benefits. However their education and training needs continue and they believed that availability of the program was too limited. Services wanted more courses and, in particular, increased provision in rural areas that are often overlooked because of the demand in metropolitan centres. A number of respite service managers also suggested that the cost of the CEWT course for the service was high and limited their ability to cover all relevant staff. There was a need expressed by managers for:

• More advanced courses with a specific focus • Increased content on communication skills and how to work better with families • Advanced managing loss and grief counselling training

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12. Did the CEWT Program Meet the Specified Objectives?

Objective

Outcome (exceeded, met, improvement

needed, further research)

Comment

Participant Satisfaction Exceeded Format was very well received by both Respite Workers and

Family Carers Participant’s knowledge and

attitudes to challenging behaviour

Exceeded Knowledge quiz, vignettes and service provider feedback validates that the course achieved this outcome.

Understanding the needs of carers and the person with

dementia Exceeded

Vignettes and service provider feedback provides the evidence that this outcome has been met.

Program Outputs Met 134 CEWT courses run in 2002/2003 period, unmet need for more courses.

Nationally consistent training program implemented Met

An accredited VET course provided National Standards that are accessible to the general public via other service providers. Process needs to be demonstrated to ensure that the content is regularly updated as required.

Participant’s management of challenging behaviour Met

For Respite Workers: assessment of this outcome would be strengthened by work place assessment of skills in practice. For Family Carers: issues are often changing (deterioration of health, new behaviours emerging etc), while the course assisted them they require ongoing support.

Identifying barriers to the use of respite

Met

Identified three major types, the information should be used in future planning of respite services 1. Respite Service Issues (lack of flexibility in times and types, availability in the area etc) 2. Person with dementia resistance is a determinant in type of respite used (e.g. home based is more comfortable for person with dementia) 3. Carer or Family Issues (e.g. knowledge and acceptance of respite) – the course directly addressed this issue

Uptake and Attitudes to Respite Met

Reports by Family Carers indicated • a better understanding of services available • more comfortable using respite • respite use was increased • respite helped to decrease stress levels

National Assessment Guidelines Improvement Needed

While National Assessment Guidelines were documented there were indications that their application may not be consistently applied. Commitment to multiple modes of assessment could be eroded if workplace assessments and indirect work based evidence are dropped in future.

Resource Allocation & Affordable fees for Respite Organisations & Workers

Improvement needed

Costs for Respite Worker participants varied significantly between states. Given the program is Commonwealth Government subsidised, the lowest possible fee should be nationally applied.

Program Reach - geographical & type of

participant

Improvement needed

The geographical reach in some States and Territories was very limited. However, using an accredited VET course extends the future potential impact of the course beyond the current reach of the program – consideration should be given to ‘master trainer’ models for regional areas. The type of participants targeted varied considerably across CEWT sites. National guidance on the type of participant that should be targeted by the CEWT program would enable a more nationally consistent approach to be adopted and strengthen the intervention.

National Resources - Distance Education

- Video ‘Brain and Behaviour’ Further research

Distance Education package implemented late into the evaluation period, with limited uptake of this resource. The video ‘Brain and Behaviour’ was developed from an existing

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educational tool and was a well regarded training resource.

Course Delivery Aspects Further research

Now that the structure of the course is designed, review of the delivery format options is required (e.g. audio & video conferencing, on-line internet courses). Rural and remote areas are disadvantaged if courses provided in a short time frame (over one or two weeks).

Identification of ‘Hidden Carers Further research

In terms of hidden carers, 67% of Family Carer course participants had never had a contact with Alzheimer’s Australia. A mass media campaign may be required to access carers who have no contact with any formal services.

13. Did the CEWT Program Meet the Overall Objective? The results of the evaluation suggest that the overall objective “to improve access to and use of respite by carers of persons with dementia and challenging behaviour…” was in general achieved. For example:

• It is likely that participation in the CEWT course assisted with the uptake of respite by family cares who attended the course – there was a consistent trend across the time periods with more people in absolute terms using formal in-home HACC type respite options at Time 2 in comparison with Time 1.

• Carers were more informed about respite services after completing the course. Over 9 in 10

carers followed-up indicated: o they had a better understanding of respite services since completing the course o they felt that the course taught them how to access respite services and; o the course provided guidance on the situations in which they would consider using

respite

• Carers were much more comfortable about using respite services and indicated they were much more likely to ask for respite services after completing the CEWT course.

• Respite Service providers reported that they believed the course had improved knowledge,

attitudes and management of ‘challenging behaviours’ in their organisation. There were many positive comments about the impact on staff practices, indicating that the knowledge and attitudes are also demonstrated in new skills.

While the CEWT course has made a positive contribution to the complex issues surrounding ‘uptake of respite’, the recommendations that follow aim to further improve and strengthen the interventions that are used to deliver this outcome. It is also apparent from the barriers to respite reported by carers that there are a number of issues such as lack of availability, lack of flexibility (eg. times), providers who are unwilling to take people with ‘difficult behaviours’ and the person with dementia resisting the respite placement, that will require additional initiatives if respite care is to be more comprehensively addressed.

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Recommendations Considering the ongoing needs to develop the CEWT program, the following recommendations are provided. The recommendations have been developed after consideration of the research results and discussions with Family Carers, Respite Services and staff involved with the CEWT program from Alzheimer’s Australia and the Carers Associations. Strategic Direction 1: Future Development & Initiatives Evaluation Outcomes: The CEWT program provides an accredited, sequential, detailed and nationally delivered education program. The CEWT program successfully met most of the achievable specified performance criteria. The CEWT program was delivered via a national framework, Respite Workers and Family Carers displayed increased knowledge after course completion and Respite Workers attitudes also improved via an objective assessment. Respite Workers, Respite Services and Family Carers were extremely satisfied with the running of the course, the content and the outcomes. They also indicated in a number of evaluation areas that they felt better able to cope with difficult situations. It also appeared that participation in the course tended to increase the uptake of respite.

Recommendation 1: The CEWT course has been successful at meeting its objectives. It is recommended that the CEWT program be continued and further developed to meet the growing demand for support to Respite Workers and Family Carers. Consolidating the Gains: The CEWT program provided a very helpful and informative education course. In many instances it raised expectations of better ways forward for Family Carers but the problems are changing significantly as the illness progresses. What Family Carers learn from a course at one point in time is not necessarily going to be transferred to new situations. Without subsequent formalised follow-up systems the benefits of the course and the carers ability to move through the future challenges may be significantly diminished. The evidence provided by carers is that the course did materially assist them with their tasks but that the changing circumstances necessitates on going ‘individualised’ support to maintain the gains and provide a sense of support ‘as required’. Recommendation 2: That all Family Carers participating in the CEWT Carers course be assigned a contact person (eg. counsellor) from the Alzheimer’s Australia, or possibly a counsellor via the new counselling program being introduced by Carers Associations, who would make contact at around 4-weeks after the course conclusion to follow-up on developing issues and consolidate the learning. In this regard all counsellors who participate in this follow-up program should be aware of the CEWT course content and general flavour of discussions from this specific CEWT group. Only those organisations with a wide breadth of support options would be appropriate for this type of follow-up service (eg. counsellors, support groups, telephone counselling).

Linking Family Carers with Services: The CEWT program was to link workers, carers and services to achieve a number of program objectives. The CEWT courses were not always focused in a nationally consistent way, on linking the people involved with the different aspects of respite care at a local level (eg. local respite providers and services with local carers). It is acknowledged that this may be difficult to achieve in some circumstances. Recommendation 3: Where possible, each CEWT course should actively seek to link via the CEWT program, local respite providers and staff with local carers supporting people with dementia. This may be achieved by running some ‘combined’ sessions or organising respite workers to present at special carer course sessions. Other options (unrelated to the CEWT program) such as regional respite ‘road shows’ should be considered where local carers and respite providers can meet and carers can familiarise themselves with the available services. This may take the form of a type of ‘display’ where carers can discuss the respite options with local providers.

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Developing an Emphasis on Carer Issues: The CEWT course had a strong focus on knowledge, attitudes and the management of challenging behaviour. While these are appropriate topics more emphasis should be placed on aspects associated with ‘caring for the carer’ for the Family Carer course. For example it was apparent from the interviews with carers that (i) Carers were often not well enough supported and often failed to attend to their own needs (ii) carers were usually elderly with their own health problems and physical impairments and were often on the edge of being able to manage – attending to their own situation is therefore crucial if they are to maintain the caring role and (iii) the course needs to raise awareness of what is meant by ‘respite’ to develop more carer friendly practices in respite services. The CEWT Family Carer course delivered in Victoria had significantly more content in Module 3 on ‘The Impact of Caring’ and ‘What is Respite’ than other sites. This additional content was developed and delivered by Carers Victoria in partnership with Alzheimer’s Victoria. Recommendation 4: That the sections on ‘The Impact of Caring’ and ‘What is Respite’ used in the Victorian CEWT course be further developed, expanded and adopted for inclusion in the national CEWT program Module 3. This module should be delivered in a nationally consistent way across all CEWT sites. Consideration should be given to extending the time available for this component beyond the current 2 hours to a more extended time/session. This material could be developed by the Carers Associations that have demonstrated expertise in this area (eg. Carers Victoria), National Carers and the CEWT national program committee. Additional Family Carers Course Options: Further to Recommendation 4, consideration should be given to the development of a ‘new’ non-competency based Family Carers course that has as its entire focus the ‘caring for the carer’ concept. There are a number of course models in existence where carers are taught to look after their own emotional and psychological wellbeing so as to fortify their ability to operate as effective carers. Recommendation 5: Consideration should be given to developing a separate non-accredited course option that focuses more exclusively on ‘caring for the carer’ issues and content. It may be appropriate to consider varying the form of presentation to be less didactic, more interactive and less like a formal lecture arrangement. Special Needs Targeting: The CEWT program was to target ‘special needs’ groups, people from culturally and linguistically diverse backgrounds and persons of aboriginal background. From the data base information, only thirteen people requested special assistance due to ethnicity and there were no recorded requests for special assistance for disability or learning supports. The funding to develop a number of pilot projects should allow CEWT sites to research the development of innovative projects to better address the needs of special needs groups. Recommendation 6:. If the CEWT program is to successfully target special needs groups the course materials and teaching approaches will need to be heavily modified. For example to better target aboriginal people it may be desirable for aboriginal workers to be trained to provide the ‘modified’ CEWT course to people from aboriginal backgrounds. The same approach may work for ethnic communities where ethnic workers may be the appropriate vehicle to promote and deliver a modified CEWT course. This type of approach has already been used in NSW where an abbreviated, translated program has been developed for carers from culturally and linguistically diverse backgrounds. Additional resources will be required for the development and testing of these pilot approaches. The CEWT funding arrangements should continue to allow for innovative local pilot projects to be funded in response to situations where a new development/modification to the existing program is required. There should also be independent evaluations of these projects to determine the effectiveness of the pilots and their utility for national implementation. Once a pilot project is deemed suitable for national implementation, materials developed as a part of these ‘pilot projects’ should then be made available on a national basis to further enhance the ability of the CEWT program to be flexible to local needs.

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Development of a CEWT ‘Lite’ Respite Worker Option: There were a number of workers for which the current structure of the CEWT certificate III program was unsuitable. However, these workers still required an educational, information and support program to assist them with their respite service work with people with dementia and challenging behaviour. This course could also serve as an introductory platform for the CEWT certificate III course. Recommendation 7: It is recommended that a ‘CEWT Lite’ version be developed. This will be based on the existing Certificate II level competency in Aged Care and be developed for people entering the industry with low levels of literacy and for workers and carers from culturally and linguistically diverse backgrounds. Strategic Direction 2: National Standards Literacy Assessment: The majority of the states (excluding the ACT and Tasmania) are offering some level of internal developed support for those with literacy issues. However, no sites had a formal process for determining whether students had sufficient literacy skills to enable them to adequately understand the course materials and complete the assessments. This approach was believed too intrusive and sites preferred to assess the level of literacy at the first session and deal subsequently with any problems via special support approaches. Recommendation 8: Given that the CEWT course is nationally implemented there should be objective national standards developed to assess the literacy level required to successfully complete the Certificate III CEWT program. Additionally there should be national standards developed that specify the steps that must be taken to support students that are having difficulty reaching the necessary literacy level. Workplace Assessments: National Guidelines were developed by Alzheimer’s Australia for the Assessment Sheets and Marking Guides and all States and Territories agreed to use these standardised approaches. The assessment format included (i) journal entries (ii) written assessments and (iii) work based assessments (covers workplace or work based assessments of skills). This assessment approach reflected multiple modes of assessments as advised by the Australian National Training Authority (ANTA) . The competency course has encouraged aged care facilities and respite organisations to send staff to the CEWT Respite Worker program. The requirements of workplace assessments was indicated as a difficulty for some CEWT sites to resource and monitor effectively. It was agreed by all CEWT program managers that the ‘best’ assessment was one that examined the CEWT student in the workplace assisting residents in the day-to-day activities. However because of the difficulty CEWT sites are considering changing the work based assessment with a written assignment. Recommendation 9:.Workplace assessment remains an essential component as it links the theory to practice and is important for assessing people with literacy challenges. It is recommended that workplace assessment be retained and that ways of conducting this effectively are developed with organisations (eg. RTO’s) expert in this area Strategic Direction 3: Course Delivery Emphasis on Experienced Trainers: All Alzheimer Australia trainers running Respite Worker’s and Family Carers Courses had the required qualifications for Workplace Training and Assessment. As well, the four trainers from Victoria and Tasmania Carers had a Certificate IV in Workplace Training and Assessment. The level of practical experience in managing challenging behaviour in aged care settings is also considered an essential skill required by trainers for the Respite Workers program. Recommendation 10: Qualifications and general dementia care experience are important for course trainers. However it is also important to make sure that trainers (eg. at least one trainer at each site) has ‘hands-on’ experience in an aged care service as much of the CEWT course covers practical interventions that must be practised in complex environments. Respite Workers Training Model: It is important to have as many participants from the one service (or linked services) together at the course to enhance opportunities for learning and collaboration back at the workplace. The benefits are ‘doubled’ when most service staff attend – the service has much better sharing of information and staff receive the required competency together. CEWT courses also work well when there is a professional mix of people (eg. direct care workers; supervisors, managers; care co-ordinators) across the service in attendance. Limits may need to be placed on the number of people from senior management categories in attendance if direct care workers are under-

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represented in the course. Recommendation 11: For Respite Workers the CEWT courses should use a ‘whole of service’ model where possible rather than target individuals. This approach must encourage a professional mix of people (eg. direct care workers; supervisors, managers; care co-ordinators; linked providers and workers) to attend.

Development of Alternate Modes of Delivery: A paper-based distance education package was developed by Alzheimer’s Australia Vic and this became available during the evaluation period. This resource included a short video (10 minutes from “Speaking from experience”) and an audio tape. There was limited uptake of this resource and consideration should be given to whether it is going to be a successful high-volume mode of delivering the program to the sector. At present there are a number of organisations developing different models for delivering ‘distance’ or ‘non classroom’ type training programs. Recommendation 12: Alzheimer’s Australia could look to partner other organisations that have expertise in the development and delivery of education programs via different modalities. For example, distance education, satellite and online programs are already delivered by the TAFE, University and large residential organisations in the aged care sector. Rather than funding the development of new systems for delivery, ways of sharing the existing technology may provide a more efficient use of resources. In this regard Alzheimer’s and Carers Australia would become the expert content providers for programs focusing on Respite Workers and Family Carers. Time between CEWT sessions. For Respite Workers, sessions can be held over 1 day per week for 8 weeks or in the most condensed format, 3 days in one week. For Family Carers sessions can be held over 1 day per week for 6 weeks or in the most condensed format, 2 days in one week. It is acknowledged that the CEWT course works best when there are regular opportunities for workplace interaction and student learning between the CEWT sessions. This makes the course more dynamic and practical as students are testing their learning ‘on the job’ and then feeding this back into the course environment for interactive discussions. The general consensus on how long as a minimum the CEWT course should take for Respite Workers and/or Carers course to achieve these outcomes was 4 weeks. Recommendation 12: CEWT courses in rural/remote areas and those a distance from the main training base were often condensed into periods of time that were less than optimal. It is recommended that there are agreed national standards on the appropriate periods of time over which to run a course (eg. course over 4 weeks at a minimum). Compromises to this standard should be made only in extreme circumstances. Strategic Direction 4: Course Management Extending Program Reach: CEWT managers, respite providers and carers indicated that regional areas require more coverage to meet the demand for the program. The present CEWT model provides for staff from the central capital city locations to mostly travel to regional areas to run these courses – this restricts access and leads to the courses being compressed into one or two weeks periods. Consideration should be given to identifying priority regional areas and establishing local trainers (eg. master trainer concept) that could be ‘accredited’ to run the CEWT program. Recommendation 13: It is recommended that ways of providing outreach services that build on the expertise gained by the CEWT program are urgently explored. One possibility is the development of a new ‘accredited CEWT trainer’ course as an expanded part of the current CEWT program. Regional educators would be trained, given ongoing support, supervision and provided with currently developed materials (education modules and assessment guidelines) to maintain program quality and consistency.

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Number of CEWT Courses: The funding to Alzheimer’s Australia for provision of the CEWT program was provided by the Commonwealth Government over four years. This funding includes costs associated with national and state administration, Carers Association funding, staffing at sites, production of materials, promotion, advertising costs, travel, facility hire and other expenses covering program delivery. In the financial year of 2002-2003 there were 84 Respite Worker Groups conducted with 1,196 Respite Workers (average 14 per group) and 54 Family Carer Groups conducted with 542 Family Carers (average of 11 people per group). The number of courses and other activities to be provided by individual states was determined using a formulae based on “outputs”. Recommendation 14: As the CEWT program is now established, infrastructure developed or purchased, and management expertise well developed, it may be appropriate to review the formula that determines the outputs required from each CEWT site. Role of Carers Associations: The role and degree of involvement varied significantly from state to state. These variations were due to the degree of involvement desired by the different state Carers organisation, the resources available to the Carers organisation in terms of trainers and the co-operative relationships between the local state organisations. Almost all Carers Association sites had at least a promotional role with both the Respite Worker and Family Carer courses. Recommendation 15:. Local arrangements between Alzheimer’s and Carers Associations are negotiated. It is recommended that as a minimum, the local state Carers Associations are involved in an Advisory role on local CEWT state management committees. Family Carer Course Provision: The CEWT program was very well received by Family Carers and the benefits were significant. In terms of the CEWT services provided in the 2002/2003 year there were 84 Respite Worker courses and 50 Family Carer courses provided. Recommendation 16: Given the success of the Family Carers course and the benefits provided to carers, it is suggested that the number of outputs targeted to Family Carer courses be increased as a proportion of CEWT activity in the 2004/2005 period. CEWT Participants: The CEWT program provides a structured intervention that was “to improve access to and use of respite by carers of persons with dementia and challenging behaviour, by enabling the carer and service provider to better understand their own needs and those for whom they care”. An ongoing focus on this goal is required if the CEWT program is to continue to meet this overall objective. Recommendation 17:. The CEWT courses should be predominantly provided in a nationally consistent way, to those organisations/services/programs that are directly involved in the provision or management of Respite Care for carers of people with dementia and challenging behaviour. This includes both public and private service providers in the residential, community-based and home-based respite services area. For the Family Carer course, the targeting should focus on family members, friends and other non-remunerated people directly involved in caring for a person with dementia and challenging behaviour in domestic settings.

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Strategic Direction 5: Research into Respite Care Issues Barriers to Respite: While the major barriers as perceived by carers focused on the commonly acknowledged respite service issues (eg. lack of availability, little flexibility in the times provided), a new group of issues was consistently raised by carers. The high level of resistance to facility-based respite by the person with dementia was the single most frequently reported barrier to respite use. Carers therefore often preferred ‘in home’ services because then the person with dementia may be more amenable to respite in a familiar surrounding or with familiar people. Families also felt they had more control over the specific service that is provided when it is delivered ‘in-home’. Recommendation 18: Providing more flexible and better skilled respite options for carers will be helpful to improve respite uptake. However, even if the respite circumstances are ideal, the person with dementia may not wish to leave their home for a ‘foreign’ environment. It is recommended that a targeted research project, focusing on the ‘pathways to respite’ and the assistance carers and families need to help re-assure the person with dementia (and other family members) regarding respite placement be supported. The findings can then be included in the CEWT course content nationally to assist carers manage this issue more successfully.

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1. Introduction The Carer Education Workforce Training Project (CEWT) is a joint initiative of Alzheimer’s Australia and Carers Association. The four year program was funded by the Commonwealth Department of Health and Aged Care in May 2001 for $1.4 million per year for four years. In June 2001 Applied Aged Care Solutions (AACS) was selected to conduct the Evaluation of the CEWT program. The evaluation did not commence in full for some 12 months after this date. This was to allow the program to develop to a point that allowed for a more complex evaluation. The major stated objective for the CEWT project was:- “to improve access to and use of respite by carers of persons with dementia and challenging behaviour, by enabling the carer and service provider to better understand their own needs and those for whom they care”. Alzheimer’s Australia and Carers Association are delivering the CEWT intervention by providing education services using an accredited dementia course competency unit (CHCAC15A), within the Vocational Education Training (VET) scheme. The VET scheme has multiple training packages which provide nationally endorsed standards and qualifications. The dementia competency unit comes under the umbrella of the Community Services Training Package (CHC99) which provides qualifications in many areas of community services including for Aged Care. The range of qualifications available for Aged Care workers ranges from Certificate 1 through to Diplomas. The dementia competency unit is an elective and can be used towards a number of qualifications. The use of an education program is aimed at linking workers, carers and services to achieve the stated objective.

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2. Evaluation Methodology

2.1 Overview Applied Aged Care Solutions (AACS) evaluated the Carers Education and Workforce Training Project using quantitative and qualitative methods. The approach allowed for quality improvement as the CEWT program developed. The evaluation was across multi sites, with a repeated measures design, assessing a program run for family carers and respite workers. The evaluation covered areas associated with the following domains:

Process Evaluation

• Program Typology (What are the various intervention aspects) • Program Processes (What was implemented and how, resource allocation, products

produced e.g. distance education package and CD) • Program Reach (market penetration to target population, participant demographics) • Participant Satisfaction

Outcome Evaluation

• Participant’s knowledge and attitudes to challenging behaviour • Participant’s management of challenging behaviour • Understanding the needs of carers and the person with dementia • Access to and use of respite services • Barriers to the use of respite • Identification of “hidden carers”.

The evaluation was conducted in three phases: Phase One: In the first six months

• Site visits were undertaken by the evaluators to introduce the evaluation approach and collect documentation about the program process

• Typology pro-forma’s were emailed to all CEWT managers and Carers Association managers

• When the sites were ready for the formal evaluation, Phase Two commenced. Phase Two: Program outcomes were evaluated by the collection of information from CEWT course participants. Data describing base line information and immediate impacts of the course were collected. Participants were asked to complete the following standardised forms:

• Registration information (Table 2.1) • Evaluation Forms (at the beginning and end of the course) • Participant Satisfaction Forms (at the end of the course).

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Table 2.1: CEWT Course Participant Registration Information

CEWT COURSE PARTICIPANTS x= collected if

Respite Worker x=collected if Family Carer

Source of Referral to CEWT x x First Contact with Alzheimer's Association x x Special Assistance/Consideration Required x Employment Location x Current Job Position x Organisation Provides Dementia Care x Dementia Care Experience x Overseas Resident x Recognition of Prior Learning x Stand Alone Assessment x Person with dementia behaviour/s of concern x gender x year of birth x country of birth x language other than English x indigenous status x accommodation setting x living arrangements x Diagnosis x Current and discontinued services x Barriers to Respite x

The content in the Respite Worker’s Evaluation Form covered:

• Vignettes: these investigated the participant’s knowledge and attitudes to challenging behaviour, challenging behaviour management skills, understanding of the needs of the family carer and the person with dementia.

• Knowledge of dementia management quiz The content in the Family Carer’s Evaluation Form covered:

• Health Status information about the carer and the person with dementia • Knowledge of dementia management quiz • How affected the carer was by their caring role • Access to & use of respite services • Barriers to and their use of respite

The content in the Participant Satisfaction Form covered:

• Course services • Course content • Group leadership • Impact on workplace behaviour

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Phase Three: This involved interviews focusing on the long term impact of the course with course participants and interviews with staff to review the CEWT program.

This included the follow-up interviews with:

• Family Carers (Time 3 data) • Respite Service Providers • CEWT staff from Alzheimer’s Australia • Carers Association staff associated with the CEWT program

The follow-up interview methodology involved: (a) A sample of family carer participants were contacted by telephone to assess longer-term outcomes. The in-depth discussion with the respondent over the telephone investigated any long-term changes to understanding and managing behaviour and the impact of the course on carers in:

• use of supports • issues of concern and the impact of caring • understanding of respite programs • knowledge of how to apply for respite support • willingness and interest in using respite • helpfulness of respite • barriers to using respite

(b) CEWT manager interviews: these face to face and telephone interviews informed on the program format, and strengths and weaknesses of the program and the future development of CEWT.

(c) Carers Association interviews: these telephone interviews informed on the program format, and strengths and weaknesses of the program and the future development of CEWT. (d) Service Providers telephone interviews: these involved a sample of Service Providers who had more than one staff member completing the CEWT course. These telephone interviews informed on:

• incidence of challenging behaviour in their service • impact of the program at the workplace • barriers to respite access • use of respite issues • identification of hidden carers • strengths and weaknesses of the CEWT program • future suggestions regarding CEWT program development

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Table 2.2: Data Collection Summary Overview Evaluation Aspect Family

Carer Respite Worker

CEWT Site (AA)

Carers Association

Service Provider

Program Description Phase One Phase One

Demographics of participants

Time 1 Time 1

Health Status of person with dementia & family carer

Time 1

Mobility of person with dementia & family carer

Time 1

IADL of person with dementia

Time 1

Knowledge of Challenging Behaviour – Quiz

Time 1 Time 2

Time 1 Time 2

Attitudes to Challenging Behaviour – vignettes

Time 1 Time 2

Impact of Caring Time 1 Time 2 Time 3

Respite – access & use Time 1 Time 2

Barriers to Respite Time 1 Time 2

Phase One & Follow-up Interviews

Phase One & Follow-up Interviews

Follow-up Interviews

Hidden Carers Phase One & Follow-up Interviews

Phase One & Follow-up Interviews

Follow-up Interviews

Participant Satisfaction

Time 2 Time 2

Program strengths, weaknesses, opportunities, future directions

Follow-up Interviews

Follow-up Interviews

Follow-up Interviews

Phase One = Interviews and Typology forms Time 1 = Registration Form & Evaluation Form in First Program Session (base line) Time 2 = Evaluation Form in Final Program Session & Participant Satisfaction Form Time 3 = Phone interviews with Family Carers approximately 6 months after last Program Session

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2.2 Evaluation Tasks

Table 2.3: Summary of Tasks Date Phase One July- Dec 2001 Interviews With Program Managers July- December 2001 Program Typology (AA & CA) National Forms (Registration & Participant Satisfaction) Evaluation Forms Database Development Support and Training Phase Two Jan 02- June 04 Data Collection from Evaluation Forms May 2002- July 2003 Data Collection from National Forms May 2002- December 2003 Phase Three Jan- June 2003 Time 3 interviews with Family Carers February- March 2003 Interviews with Service Providers October 2003 Follow-up Interviews with CEWT staff (AA & CA) October 2003 - February 2004 Attendance at National Meetings July 2001- March 2004 Interim Report October 2001 Progress Report February 2003 Final Report April 2004 a) National meetings attendance CEWT Program Managers (2001) CEWT Steering Committee (12th October 2001) CEWT Annual Program Managers meeting (9th February 2002) CEWT Steering Committee (29th April 2002) CEWT Steering Committee (18th March 2004) b) Visit Program Site visits were used to collect documents and information on local sites issues and present the evaluation approach to all CEWT staff. A developmental approach was taken in the first twelve months to enable all sites to be ready for the formal outcomes evaluation. In May 2002 the Evaluators reported in the draft typology report (February 2002) that all sites except the Northern Territory were established and ready for the formal outcome evaluation to commence. It was expected at that time that the Northern Territory would be ready to commence courses in July 2002 and this was achieved. c) Typology Pro-Forma

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It was essential to develop a clear guide to each program type. While all sites were committed to use the National Standards, it was expected that there would be variation in style, delivery and emphasis. The differences between each program was measured using a program typology developed from qualitative (interviews and documentation) and quantitative (pro-forma emailed to all sites) data. Both the Alzheimer Australia and Carers Association were contacted for information about the program typology report. The analysis of the typology pro-forma and information collected during site visits is presented in Chapter 4 of this report. d) National Forms National Forms were developed by Applied Aged Care Solutions (AACS) after consultations with National CEWT managers during site visits and at National Meetings. There was agreement that certain information would be collected and entered into the National database to assist in standardised data collection. This would reduce the need to double enter information for national and site specific purposes. The forms covered enrolment and course satisfaction information (respite worker registration, family carer registration and participant satisfaction). Use of the national forms began in June 2002. Each site was responsible for the data entry into the CSCM database. The ongoing analysis of this data in national Reports was impacted by the limited amounts of data entered for the CEWT program into the CSCM database during the evaluation period (refer to the National Data Reports No 7 to No 11). The CSCM data reported on the program reach, demographics of participants and the participant satisfaction with the process. e) Evaluation Forms Evaluation Forms developed by AACS were for Respite Workers (Time One & Time Two) and Family Carers (Time One & Time Two). It was originally planned that these forms would be collected from January 2002. However the initial discussions with sites demonstrated they were not ready to commence the formal evaluations until May 2002. In consultation with the sites, AACS took over the responsibility of data entry of the evaluation forms. The ACT commenced collection in June 2002, Northern Territory, New South Wales, South Australia, Tasmania & Victoria commenced by July 2002, Western Australia in August 2002 and Queensland in October 2002. The completion of evaluation forms was not compulsory for course participants, however all sites agreed to encourage the completion of the forms. As the Respite Worker’s course is an accredited course the request to complete forms for evaluation was not seen as onerous for these participants. The Family Carer’s evaluation form was modified by AACS to be as acceptable as possible to the Family Carers. The main difficulty in obtaining numbers for the Family Carer’s course was the lower than expected number of courses held. The data collection time was extended to obtain the statistically required numbers for a robust analysis. This was particularly critical for the Family Carers Course across all sites, and in some sites for the Respite Worker’s course. Results are reported in Chapters 5 to 8 of this report. f) Support & Training Support and training was provided by AACS on data collection and data entry. On-line manuals were developed to assist data entry into the National Database (CSCM), extensive assistance via telephone was provided as required and site visits were made to most sites between June 2002 and December 2002 to explain in detail the data collection and entry requirements.

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g) Follow-up Interviews Follow-up telephone interviews were undertaken with sixty-nine Family Carers from February to March 2003 and the results were initially reported at the National Alzheimer’s Conference in Melbourne 2003. The final results are reported in Chapters 7 and 8 of this report. A sample of fourteen Service Providers were interviewed in October 2003 and the results are reported in Chapter 10 of this report. Each Service Provider represented a “service” that contained many staff. Between October 2003 and February 2004 follow-up telephone interviews with Alzheimer’s Australia CEWT staff and the Carers Association staff was undertaken to provide data on the long term outcomes of the program and a final perspective. These interviews informed on future options for CEWT, the reach of the program, course delivery modes and strengths and weaknesses of the program. The results are reported in Chapter 11 of this report.

2.3 Data Collected on the National Data System

The national database Community Services Client Manager (CSCM) was used to collect demographic information on program participants for the time period July 2002-June 2003. The number of people entered on the CSCM system does not represent all people attending CEWT courses in the 2002/2003 financial year period due to non-entry in the system. To capture a more complete picture the National Program Manager supplied information on all people and all courses run during this period (reported in Tables 3.3, 3.4).

The demographic information from CSCM as discussed in this report therefore reflects a sub-set of all data. There were 731 respite workers and 304 family carers entered on the national system in this period (Table 2.4). The 731 respite workers had 3,096 attendances and the 304 family carers had 1,106 as recorded on CSCM (Table 2.5).

The CSCM data does comprise a substantial sample however and represents 61% of all respite workers and 56% of family carers for the 2002/3 period attending the CEWT courses.

Table 2.4: Number of Distinct People recorded on CSCM attending CEWT Courses (July 2002 – June 2003) Type of Participant Frequency Percent Respite Worker 731 70.6 Family Carer 304 29.4 Total 1035 100 Table 2.5: Number of People Contacts recorded on for CEWT Attendees (July 2002 – June 2003) Type of Participant Frequency Percent Respite Worker 3,096 73.6 Family Carer 1,106 26.4 Total 4,202 100

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3. Demographics & Program Activity

This chapter describes the number of courses held around Australia in the 12-month period from July 2002 to the end of June 2003, the number of evaluation forms collected, demographics about Respite Workers and Family Carers (from information collected in the national database or in evaluation forms).

3.1 National Data Tables 3.1 and 3.2 report the number CEWT courses and attendance figures by month for the financial year 2002-2003 as provided by the National Manager of the CEWT program. Figure 3.1 shows the number of group types by state. In the financial year of 2002-2003 there were:

• 84 Respite Worker (RW) Groups commenced • 1,196 RW participants registered in those 84 groups • An average of 14 people per group

• 50 Family Carer (FC) Groups commenced • 542 FC participants registered in those 50 groups • An average of 11 people per group

There was limited use of the distance education package with registrations reported for 10 people in South Australia between February 2003 and April 2003. The funding to Alzheimer’s Australia for provision of the CEWT program was provided by the Commonwealth Government over four years ($1.4 million per year). This funding includes all costs associated with national and state administration, Carers Association funding, staffing at sites, production of materials, promotion, advertising costs, travel, facility hire and other expenses covering program delivery. The number of courses and other activities to be provided by individual states was determined using a formulae based on “outputs”. The actual number of courses provided by state is detailed below and in Tables 3.1, 3.2 and Figure 3.1. As related to the funding received by each state Alzheimer’s Australia auspice, the following describes the number of courses by state for the 2002/2003 financial year:

• New South Wales – 37 CEWT courses (27 respite worker; 10 family carer) • Victoria - 27 CEWT courses (15 respite worker; 12 family carer) • Queensland - 17 CEWT courses ( 7 respite worker; 10 family carer) • South Australia - 16 CEWT courses (10 respite worker; 6 family carer) • Western Australia - 10 CEWT courses (4 respite worker; 6 family carer) • Tasmania - 9 CEWT courses (8 respite worker; 1 family carer) • Northern Territory - 6 CEWT courses (5 respite worker; 1 family carer) • ACT - 12 CEWT courses (8 respite worker; 4 family carer)

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Table 3.1: Respite Worker Courses - Number of Groups and People 2002 2003 July Aug Sept Oct Nov Dec Ja

n Feb Mar Apr May June Total

NSW groups 5 4 4 5 1 - - 2 3 - 3 - 27 NSW people 58 59 60 79 20 - - 26 38 - 50 - 390 VIC groups 4 - 4 - 1 - - 2 - 2 2 - 15 VIC people 57 - 48 - 14 - - 22 - 28 29 - 198 QLD groups - - - 2 - - 3 - - 2 - - 7 QLD people - - - 20 - - 38 - - 38 - - 96 SA groups 2 - 1 - 1 - - 1 1 1 1 2 10 SA people 38 - 20 - 18 - - 17 17 16 22 40 188 WA groups - 2 - - - - - 1 - 1 - - 4 WA people - 32 - - - - - 5 - 9 - - 46 TAS groups 1 2 2 1 - - - 1 1 - - - 8 TAS people 9 28 21 13 - - - 10 7 - - - 88 NT groups 2 - 1 - - - - 1 1 - - - 5 NT people 17 - 17 - - - - 12 10 - - - 56 ACT groups - 1 1 2 - - - 1 2 - 1 - 8 ACT people - 10 14 50 - - - 10 36 - 14 - 134 All groups 14 9 13 10 3 - 3 9 8 6 7 2 84 All people 179 129 180 162 52 - 38 102 108 91 115 40 1196

Table 3.2: Family Carer Courses - Number of Groups and People 2002 2003 July Aug Sept Oct Nov Dec Ja

n Feb Mar Apr May June Total

NSW groups - 2 - 1 2 - - - 2 1 1 1 10 NSW people - 28 - 9 45 - - - 32 27 16 7 164 VIC groups - - 1 2 2 - 2 2 - - 3 - 12 VIC people - - 8 11 13 - 12 7 - - 11 - 62 QLD groups 7 - - 2 - - - - - 1 - - 10 QLD people 64 - - 15 - - - - - 28 - - 107 SA groups 1 - 1 1 - - 1 1 1 - - 6 SA people 14 - 10 8 - - 16 13 15 - - 76 WA groups - - 2 - 2 - 1 - - - 1 - 6 WA people - - 31 - 35 - 18 - - - 13 - 97 TAS groups - - - - - - - - - - 1 - 1 TAS people - - - - - - - - - - 4 - 4 NT groups 1 - - - - - - - - - - - 1 NT people 3 - - - - - - - - - - - 3 ACT groups - - - 1 - - - 2 - - 1 - 4 ACT people - - - 9 - - - 12 - - 8 - 29 All groups 9 2 4 7 6 - 4 4 3 3 7 1 50 All people 81 28 49 52 93 - 46 19 45 70 52 7 542

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Figure 3.1: CEWT Courses - Number of Groups in the 12-Month Period

27

15

7

10

8

5

8

10

12

10

6 6

1 1

44

0

5

10

15

20

25

30

NSW VIC QLD SA WA TAS NT ACT

Respite Workers Family Carers

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3.2 Evaluation Data Tables 3.3 & 3.4 report the number of evaluation forms collected for the Respite Workers and Family Carers. CEWT evaluation data was collected between May 2002 to approximately June 2003 (Victoria continued to collect evaluation data for Family Carers until October 2003).

Table 3.3: Respite Workers Data Collection NSW VIC QLD SA WA TAS NT ACT

Groups with evaluation data N= 44 groups

9 7 7 4 4# 3 4 6

Time One forms collected N= 616

128 106 92 73 42 38 48 89

Time Two forms collected N= 545

122 100 84 68 24 37 40 72

# WA – a distance education course did not returned the Time 2 evaluation forms

Table 3.4: Family Carers Data Collection NSW VIC QLD SA WA TAS NT ACT

Groups with evaluation data N= 33 groups

5# 11 4 4 4 0 1 4

Time One forms collected N= 261

40 67 37 28 54 0 3 32

Time Two forms collected N= 175

19 42 15 33 36 0 2 28

#NSW lost a Family Carer Time 2 course due to bushfires damage

The data collected from the Evaluation forms represents 52% (44 out of 84 groups) of the annual number of Respite Worker groups undertaken and 51% (616 out of 1,196) of the participants. The data collected from the Evaluation forms represents 66% (33 out of 50 groups) of the annual number of Family Carer groups undertaken and 48% (261 out of 542 participants) of the participants. If the groups that participated in the evaluation are similar to non participating groups, then the evaluation results should reflect the average responses of all participants.

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3.3 Respite Workers The most common type of profession reported in evaluation forms was Personal Care Assistant (PCA), except for Tasmania which had majority of ‘other carer’ (Figure 3.2). Approximately 67% of participants were hands on (i.e. EN, PCA, other carer) direct dementia care workers (Table 3.5 and Fig 3.2 & Fig 3.3). Table 3.6 presents a more detailed breakdown of profession types as collected in the National data base (CSCM). There was some variability in the background of respite workers attending the CEWT programs in the various states which mostly reflects the targeting of the program.

Table 3.5: Profession of Respite Workers Completing an Evaluation Form Profession NSW VIC QLD SA WA TAS NT ACT Total N % RN 7 12 6 5 1 0 5 5 41 6.7 EN 9 15 4 13 2 4 1 2 50 8.1 PCA 29 43 27 22 14 6 15 31 187 30.4 Other Carer 28 6 8 15 7 14 7 9 94 15.3 Activity Staff 8 8 7 5 2 2 1 5 38 6.2 Allied Health 4 2 2 5 0 0 2 0 15 2.4 Ancillary Staff 1 1 0 1 0 0 1 1 5 0.8 Other 19 14 6 2 10 1 4 8 64 10.4 Missing Data 122 19.3 616 100%

Table 3.6: Respite Worker Profession (July 2002 – June 2003) Worker Profession Frequency Percent Personal Care Worker 154 29 Respite Worker 89 17 Aged Care RN D1 20 4 Aged Care PC 19 4 Occupational Therapist 17 3 Aged Care EN D2 14 3 Activity Worker 13 2 Volunteer 13 2 Ancillary worker 12 2 Community Nurse 9 2 Social Worker 5 1 ACAT worker 4 1 Student 4 1 General Practitioner 1 0 HACC Worker 1 0 Director of Nursing 1 0 Counsellor 1 0 Teacher 1 0 Other 151 29 Total 529 100 Around 4 in 10 respite workers (39%) attending CEWT courses (refer to Table 3.7) worked in residential aged care facilities (RACF). All sites except for NSW targeted both residential facilities and community services. The NSW CEWT program targeted facilities if they were the main respite provider in the targeted geographical area.

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Table 3.7: Respite Worker Employment Location (July 2002 – June 2003) Employment Location Frequency Percent General Nursing Home 147 20 Respite Centre 79 11 Private Home 76 10 Home Help 59 8 Day Centre 57 8 General Hostel 48 7 Nursing Home Dementia Unit 43 6 Hostel Dementia Unit 40 6 Community Aged Care Package 29 4 Community Nursing Service 13 2 Community Options Project 10 1 Respite House 7 1 General Hospital 2 0 Other 112 15 Unknown 2 0 Total 724 100 Referral Patterns The CEWT course represented the first contact for 88% of Respite Workers with Alzheimer’s Australia. The sources of referral to the course were:

• Alzheimer’s Australia service or publicity (38%) • Aged Care Facility services (23%) • Community health services (23%) • Family & Friends (10%) • General publicity, government, advocacy group (4%)

Special Assistance Thirteen people requested special assistance due to ethnicity and there were no recorded requests for special assistance for disability or learning supports. Recognition of Prior Learning One person was registered on the National database for recognition of prior learning. Dementia Care Experience of CEWT Attendees Around 25% of Respite Workers had 12-months or less experience, another 15% between 1 and 2 years experience, nearly 25% between 2 and 5 years and one-third (33.1%) had more than 5 years of dementia care experience (Table 3.8)

Table 3.8: Dementia Care Experience of Registered Course Attendees Dementia Experience Frequency Percent < 6 months 86 14.2 6-12 months 76 12.6 1-2 years 93 15.4 2-5 years 150 24.8 > 5 years 200 33.1 Total 605 100.00

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Fig 3.2: Profession of CEWT Respite Workers (excluding “other”) by Site

CEWT Respite Worker Profession (ex. Other) by Site

0

10

20

30

40

50

60

NSW VIC QLD SA WA TAS NT ACT

Per

cent

age

RN EN PCA Activity Staff Allied Health

52

Fig 3.3: Profession of CEWT Respite Workers (excluding “other”)

CEWT Respite Worker Profession (excluding 'other')

8.310.1

7.7

14

3

37.8

0

10

20

30

40

50

RN EN PCA Activity Staff Allied Health Other

Profession

%

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3.4 Family Carers - Demographics A large majority of the family carers attending CEWT courses were caring for a person with dementia who had unstable health (78%), with nearly one third having had a recent hospital stay (Figure 3.4). Thirty-three percent of people with dementia related to carers attending CEWT courses were dependent on their carers for assistance with mobility (Figure 3.5). As would be anticipated with a person with dementia living in the community, they were more dependent in instrumental activities of daily living (i.e. using transport and shopping) compared to basic care requirements where they were mostly independent (Figure 3.6). In terms of behaviours of concern, around 40% of carers reported that the person with dementia had major behaviour problems. While the family carers were not as frail in health as the person with dementia, nearly one third had unstable health and one in ten had a recent hospital stay. Nearly all persons with dementia had a diagnosis of dementia (90%) and one in four had a psychiatric diagnosis. Alzheimer’s disease accounted for around 50% of dementia diagnoses (Table 3.9).

Table 3.9: Diagnosis of the Person with Dementia Supported by Carers Dementia Diagnosis Frequency Percent Alzheimer's 68 50.7 Dementia unspecified 45 33.6 Vascular 8 6.0 Frontal lobe 5 3.7 Mixed 3 2.2 Lewy body 3 2.2 Other dementia 2 1.5 Total 134 100.00 First Contact with Alzheimer’s Australia Services The CEWT course was the first contact with Alzheimer’s Australia for nearly 7 in 10 (67%) of Family Carers which while high is slightly less than for Respite Workers where 88% had their first contact with Alzheimer’s Australia via the CEWT course. Referral Sources The sources of referral of family carers to the CEWT course were:

• Alzheimer’s Australia service or publicity (64%) • Community health services (15%) • General publicity (12%) • Family & Friends (8%) • Aged Care Facility (1%)

Living Arrangements The large majority (87%) of the people with dementia associated with carers attending the CEWT courses were living in a domestic setting, with their wife (44%), husband (19%), daughter (12%) or alone (12%). Culturally and Linguistically Diverse Background A minority of carers attending the courses were from a non English speaking background (14%).

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Fig 3.4: Family Carers & Person with Dementia Health Status

CEWT Family Carers & Person with Dementia: Health Status

78

29

90

2629

10 9 9

5

15

25

35

45

55

65

75

85

95

unstable health recent hospital stay dementia diagnosis psychiatric diagnosis

Per

cent

age

Person with dementia Family Carer

55

Fig 3.5: Family Carers & Person with Dementia - Mobility Status

CEWT Family Carers & Person with Dementia: Mobility Status Rating

39

26

2

24

9

92

5

02 1

0

10

20

30

40

50

60

70

80

90

100

Independent Independent with aids Independent inwheelchair

Unsteady gait Dependent

Per

cent

age

Person with dementia Family Carer

56

Fig 3.6: Person with Dementia Activities of Daily Living Status

Person with Dementia: ADL Status

49

63

68

2826

21

15

24

7377

11

5

15

25

35

45

55

65

75

85

95

Bathing/showering Toileting/continence Shopping/banking Using transport

Per

cent

age

Independent Some Assistance Dependent

57

4. Process Evaluation: CEWT Program Description

4.1 Background The dementia competency unit CHC99ALZA (now CHCAC15A) is an accredited Vocational Education Training (VET) unit. There are six levels of VET qualifications which fit into nationally recognised qualifications from secondary school certificates, certificate 1 to IV, to Diplomas and Advanced Diplomas. The Australian Qualifications Framework body oversees all qualifications from secondary to tertiary levels. The VET scheme has multiple training packages, which provide nationally endorsed standards and qualifications. The dementia competency unit comes under the umbrella of the Community Services Training Package (CHC99). The dementia competency unit is an elective unit in the Community Services Training Package which provides qualifications for workers in aged care and other community services of:-

• Alcohol & Other Drugs • Child Protection, Statutory Supervision & Juvenile Justice • Children’s Services • Community • Community Housing • Disability • Mental Health (Non Clinical) • Youth

Training Packages undergo a quality assurance process before being endorsed by the National Training Quality Council (NTQC) and are then placed on the National Training Information Service (NTIS) database. After this process, qualified trainers can supply the unit. VET courses can be provided by secondary schools, new apprenticeships, TAFE and Registered Training Organisations (RTO). Many of the CEWT sites became RTO’s, while other sites delivered the unit under the guidance of an external RTO.

4.2 Course Structure There are eight modules in the CHCAC15A course (Table 4.1). The Respite Workers accredited course includes all 8 modules. The Family Carers’ course has a choice of two courses, a short course of 6 modules (which can be used towards completing an accredited course) or the accredited course of 8 modules. The 6 modules which make up the Family Carers’ short course are Nature of Dementia, Effective Communication, Impact of Dementia, Activities for Living & Pleasure, Understanding Challenging Behaviour and Developing Effective Responses to Challenging Behaviour. If a Family Carer wants to complete a competency certificate then the extra two modules of Person Centred Care and Worker Issues & Support Services must also be undertaken.

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Each CEWT site developed individual presentations of the material under the guidance of the National meetings of the CEWT Managers, this covered development of education modules, assessments and marking guidelines.

Table 4.1 Course Modules Course Module RW FC short

1 Nature of Dementia

2 Effective Communication

3 Impact of Dementia

4 Person Centred Care

5 Activities for Living & Pleasure

6 Understanding Challenging Behaviour

7 Developing Effective Responses to Challenging Behaviour

8 Worker Issues – Application in the Workplace

Table 4.2 Course Outline

SESSION SESSION NAME & CONTENT

SESSION 1

The Nature of Dementia • understanding dementia • the relationship to normal ageing • prevalence of dementia • current research • causes • diagnosis & review • linking brain function & behaviour

SESSION 2

Effective Communication • understanding communication • cultural sensitivity • barriers to communication • impact of dementia on communication • strategies in dementia care e.g. touch eye contact language vocal tone • use of different approaches including: reality orientation validation reminiscence

SESSION 3

Impact of Dementia • impact on person with dementia : relationships feelings needs practical issues • impact on family carer : relationships feelings needs practical issues

SESSION 4

Person Centred Care • philosophy • goals

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• principles • broad strategies: partnerships with family care worker & client relationships appreciating diversity acknowledging feelings maintaining dignity & worth of the client promoting independence / pleasure

SESSION 5

Activities for Living & Pleasure • what is an activity? • assessing individual needs & abilities • planning considerations person centred approach cultural sensitivity environment & safety promoting independence & health opportunities for social interaction partnerships with carers individual & group planning • task analysis • preparing, implementing & evaluating activities • offering support & training to families

SESSION 6

Understanding Challenging Behaviour • what influences human behaviour? • defining challenging behaviour in dementia • common challenging behaviours in dementia • identifying triggers physical & emotional health environment tasks communication

SESSION 7

Developing Effective Responses to Challenging Behaviour • problem solving approaches • seeking input from family / friends / carers • developing strategies / responses • preparing, implementing & evaluating responses • offering support & training to families • issues of restraint

SESSION 8

Worker Issues – Application in the Workplace • legal issues - duty of care • organisational policies & procedures • maintaining boundaries / work stress • teamwork • working within culturally & linguistically diverse & indigenous communities • support Services • accessing resources • awareness of support services including Alzheimer’s & Carers’ Associations • partnerships with family

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4.3 Typology Domains & Responses As a part of the carer Education & Workforce Training (CEWT) evaluation, a detailed description of the “intervention” was undertaken. This included the training model, content and delivery approaches. All Alzheimer’s and Carers Association sites were requested to complete a document “pro-forma” (refer to Appendix 12.1) that asked specific questions on the operation of their CEWT programs. The information was used to describe the training approaches and sites were encouraged to comment on the results to assist in the development of an accurate description. This “typology” was updated over the course of the evaluation as more information was compiled. A survey form was sent to all Alzheimer Australia state auspices and Carer Australia (CA) auspices to provide a detailed description of the role of each auspice in the CEWT project. The following questions were asked separately about both courses (the Respite Workers Course and the Family Carers Course) to all Alzheimer’s Australia auspices:

• Course Trainers qualification • Role of Carers Association in the course • Course Focus • Session Costs • Course Locations • Delivery Modes • Course Session Times • Course Participant Criteria • Development of Education modules, assessments and marking guidelines

The next two questions referred to the full competency course and were asked only of the Alzheimer’s Australia auspices:

• Development of Recognition of Prior Learning assessments • Development of Literacy assessments and support materials

A set of questions targeted at the expected outcomes and benefits of the course was asked of the Alzheimer’s Australia auspices:

• Planned use of national resources (Video/CD ROM, distance education package, activities kits, national assessment tools)

• Details about any overseeing committees • Needs analysis and literature reviews undertaken • Expected annual outputs • Additional sessions, staff numbers and hours funded by CEWT

The Carer Association’s were asked questions separately about both courses (the Respite Workers Course and the Family Carers Course) in the following domains:

• Course Trainers qualification • Delivery Modes • Role of Carers Association in the course • Course Focus

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Information was requested and received from all Alzheimer’s Australia CEWT sites and the National Manager. All Australian State and Territory Carers organisations were also contacted and four out of the nine sites responded in Phase One (Table 4.3).

Table 4.3: Response Rate SITE Alzheimer’s Australia

responses Carers Association response in phase 1

National - NSW VIC - QLD - SA WA - TAS NT - ACT

4.4 Course Preparation Part of the preparation by the Alzheimer’s Australia CEWT national managers was to (i) undertake a literature review (ii) needs analysis, (iii) reach agreement on national standards and materials, and (iv) undertake and produce national resources. Each Alzheimer’s Australia auspice, apart from Tasmania, prepared site specific education modules. Literature reviews A brief review was undertaken nationally in Stage 1 of the CEWT project. New South Wales, South Australia, Victoria and Western Australia reported undertaking Literature Reviews to prepare for the course modules. Needs analysis A National needs analysis report was completed and Victoria, Western Australia and Queensland also undertook separate needs analysis for both courses. An extensive pilot of the two products was undertaken in New South Wales. Victoria also held focus group discussions on the program. National Resources NSW re-worked an existing video on “Brain & Behaviour” and produced a CD Rom version. It was planned that it would be used in session one of the training course, and was made available for sale to CEWT course participants as an ongoing resource. It was available to all States/territories Alzheimer’s and Carers organisations as a resource tool for the CEWT program. A paper based distance education package was developed by Alzheimer’s Australia – Vic and this became available during the evaluation period. This resource included a short video (10 minutes from “Speaking from experience”) and an audio tape. It was designed to be combined with support from educators. The format of the support was flexible to meet local needs e.g. face to face format for the session then telephone support. It was also to be used as a self-paced package with the same

62

assessments as the face to face course. It is a resource that can be utilised outside the time frame of the current funded CEWT program period.

63

Education Modules Most sites developed their own education modules based on the nationally agreed content. Victoria is the Registered Training Organisation (RTO) for Tasmania and provides Tasmania with the required education modules. Northern Territory used the South Australian modules. National Standards & Material National Standards were developed by Alzheimer’s Australia for the Assessment Sheets and Marking Guides and all States and Territories agreed to use these standardised approaches. The assessment format included (i) journal entries (ii) in-class assessments and (iii) work based assessments. This approach reflected the assessments as prepared by the Registered Training Organisation for the ACT and included multiple forms of assessment as recommended in VET (Vocational Education Training) standards. The national assessment guidelines comprised the following:- 1. Compulsory Written Assessments The Journal Entries are the only compulsory written CEWT assessments. There are 7 Journal Entries covering

• The Nature of Dementia • The Impact of Dementia • Person-Centred Care • Effective Communication • Activities for Living and Pleasure • Understanding Challenging Behaviours & Developing Effective Responses • Worker Issues

2. In-class Assessment There are 11 Tasks and Guidelines that the student must complete. The format for this assessment is at the discretion of the CEWT trainer. For example, a student may have a non-written assessment for some tasks if they were having difficulty gaining competency in this task or if the trainer judged that literacy was insufficient to justify a written assessment. 3. Compulsory to undertake either a Workplace Assessment or Indirect Work Based Evidence The requirements of workplace assessments was indicated as a difficulty for some CEWT sites to resource and monitor effectively. In these cases consideration was to be given to replacing the workplace assessments with a written assessment. Workplace assessments were only available in the ACT, Western Australia, and by request in Tasmania. (i) Workplace Assessment: The participant is assessed by a workplace assessor whose qualifications and/or experience have been approved by the CEWT trainer. The two Workplace Assessments cover:

• Communication (to demonstrate a given set of communication skills, assessor to tick a checklist)

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• Challenging Behaviour (workplace assessor assesses written documentation of an actual episode of Challenging Behaviour by a person that the CEWT student was supporting. It is also to include a description of the situation, behaviour and intervention)

(ii) Indirect Work Based Evidence The CEWT student was to be observed demonstrating communication skills (same check list as above in the workplace assessment) at their workplace or in a volunteer situation if the student is not employed in the industry. Assessment Formats Apart from the workplace assessment and Indirect Work Based Evidence (which were direct demonstrations of communication skills), the assessment sheets were primarily in written format. New South Wales, Northern Territory and Victoria were to consider using audiotape materials as an option. In addition Victoria and Queensland would accept interview (i.e. verbal) based assessments instead of the assessment sheet format. Using a range of options, participants were able to provide their assessments results in a combination of written, audiotape and oral formats for most CEWT sites. All sites reported that if the family carer chooses to do a full competency unit then they will be assessed with the same tools as the respite worker course assessments. New South Wales and South Australia indicated that family carers will be asked to attend the Respite Worker courses if they want to do a competency unit. Alternatively, Victoria was to use the Respite Worker assessments for the carers in the Family Carer short course.

4.5 Role of the Carers Association Alzheimer’s Australia received funding from the Commonwealth Department of Health and Aged Care in May 2001 to provide the CEWT training program and partner with the Carers Association and local Carers state organisations to improve the ‘uptake and use of respite services’. Through interviews and the typology pro-forma the roles of the Carers organisations in the CEWT project were identified. The role and degree of involvement varied significantly from state to state. These variations were due to the degree of involvement desired by the different state Carers organisation, the resources available to the Carers organisation in terms of trainers and the co-operative relationships between the local state organisations. Almost all sites had at least a promotional role with both the Respite Worker and Family Carer courses (except Carers South Australia which had no involvement in CEWT sessions, publicity or information sessions). The specific role of the various Carers organisations is described in Table 4.4. This is summarised as: General Involvement (i) In New South Wales, Victoria and Western Australia, the Carers organisation is part of the local CEWT management committee. (ii) In Victoria, the Carers Association assisted in the CEWT course content development (eg. Carers Victoria assisted in the module covering the emotional impact of caring for carers) and was involved in planning for the targeting of geographical areas most in need. (iii) In New South Wales and Western Australia the Carers Association are involved in course developmental aspects and participate in promotional marketing. (iv) In the Northern Territory, the Carers Association assisted with course development aspects.

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Involvement in Course Delivery The Carers Association’s in Victoria, Tasmania, ACT and the NT also had a more direct role in the service delivery aspects of the program. This involved: (i) Carers Tasmania and Victoria provide course trainers for a section of Module 3 covering the “impact of caring” and “carer respite”. (ii) The ACT Carers and Queensland Carers were guest speakers (not trainers) in the CEWT course (regional areas only). (iii) Carers Northern Territory deliver a 2-hour training session in the Respite Workers and Family Carer CEWT Courses.

Table 4.4 : Role of Carers Association in the CEWT Program State Promotional

Aspects Provide Trainers

Part of Committees

Other Direct Role

NSW No VIC Course content development QLD No No No Guest speakers - regional SA No No No WA No No TAS No NT Guest speakers ACT No No No Guest speakers 4.6 Qualifications of Trainers The qualifications of the CEWT trainers was assessed against the documented guidelines and standards for the CEWT course as produced by Alzheimer’s Australia (version 3 August 2001). Those standards state that “Educators in the service agencies who are delivering the dementia competency will be required to meet the following criteria: • Minimum 5 years clinical experience in dementia care (this was an Alzheimer’s Australia

requirement not a VET demand) • Minimum of Certificate IV in Workplace Training (VET requirement) • Sound knowledge of dementia, including challenging behaviour • Agreement to deliver the dementia competency unit The following section examines the qualifications of trainers conducting the CEWT program in the year 2003. Alzheimer’s Australia Trainers All Alzheimer Australia trainers running Respite Worker’s and Family Carers Courses had the required qualifications for Workplace Training and Assessment (Table 4.5). There were three trainers in Western Australia who did not have the stipulated 5 years clinical experience in dementia care. However two of the three trainers did have at least three years experience in dementia care. The third trainer had a tertiary qualification in Aged Care or Nursing or related field and was deemed competent by the site manager.

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Alzheimer’s South Australia had separate trainers for the Family Carers course and these trainers did not have the Workplace Training and Assessment qualification. However, Alzheimer’s South Australia indicated that family carers are required to attend the separate Respite Workers course (where the trainers do have the Workplace Training & Assessment qualification) if they want to do a competency unit.

Table 4.5: Qualifications of Alzheimer’s Australia Trainers STATE NSW VIC QLD SA WA TAS NT ACT n n n n n n n n n Trainers used for both RW & FC courses 7 4 2 4 1 2 5 Trainers for RW only 3 Trainers for FC short course only 2 Number of Trainers with Qualifications in the following:Certificate IV in Community Services (Aged Care Work) 2

Certificate IV in Workplace Training & Assessment or the required units 7 4 2 3 4 1 2 5

Tertiary Qualification in Education 2 3 1 2 2 Tertiary Qualification in Aged Care or Nursing or Other related field 7 2 2 2 2 2 3

Experience in teaching 7 3 3 2 4 1 5 Minimum 3 years experience in dementia care 1 1 Minimum 5 years experience in dementia care 7 4 2 3 2 3 1 5 Sessional workers to have same qualifications or meet requirements yes yes yes NA NA NA yes NA yes

Would consider 3 yrs minimum experience for sessional workers yes

NA = not applicable Carers Association Trainers Information was provided from the Victorian and Tasmanian Carer Associations about the trainers who participated in the Respite Workers (RW) and the Family Carers (FC) courses (Table 4.6). The ACT and Queensland Carers Association trainers were considered guest speakers, and were therefore not required to meet the VET requirement of Certificate 4 in Workplace Assessment and Training. The Queensland Carer’s Association provided guest speakers for some regional Respite Worker courses only. Carers Victoria had two trainers, and they participated in the module “Impact of Dementia” for both the Respite Worker and the Family Carer courses. The Carers Association of Tasmania had two trainers (one in the South and one in the North of Tasmania) who participated in the module “Impact of Dementia” in both the Respite Worker and the Family Carer courses. While the four trainers from Victoria and Tasmania Carers had a Certificate IV in Workplace Training and Assessment by July 2003, they did not appear to meet the minimum requirements of “ at least 5 years clinical experience in dementia care” (Guidelines and Standards document v3). However, the Carers trainers were covering more generic carer issues areas focusing on the impact of caring covering relationships, feelings, needs and practical issues of ‘looking after the carer’. The lack of specific dementia care experience was considered less relevant in this context.

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Table 4.6: Qualifications of Carers Association Trainers Qualifications Tasmania Victoria Trainer

1 Trainer

2 Trainer

1 Trainer

2 Certificate IV in Community Services (Aged Care Work)

- - - -

Certificate IV in Workplace Training & Assessment

Tertiary Qualification in Education - - - - Tertiary Qualification in Aged Care or Nursing or Other related field

Experience in teaching - - Minimum 3 years experience in dementia care

- - -

Minimum 5 years experience in dementia care

Other- 5 years experience in community care work

- - -

Other- qualified counsellor with 3 years carers experience

- - -

4.7 CEWT Program Annual Outputs & Site Developments Due to CEWT Funding CEWT sites submitted information on their annual CEWT course outputs (2002/2003) and enhancements related to the program funding. The following information is reported in this section: • annual output points (CEWT sessions held in rural remote and for culturally and linguistically

diverse participants [CALD] were weighted as more than 1 point per course) • new groups due to the CEWT funding • additional program manager staff numbers and hours • additional training staff numbers and hours • additional other staff numbers and hours Figure 4.1 illustrates the expected versus actual (unadjusted) course outputs for the combined Respite Worker and Family Carer courses in 2002/2003. It should be noted that the actual outputs in this figure and Table 4.7 following are not adjusted for the rural/remote and cultural and linguistically diverse weightings, developed by the CEWT national management committee. This weighting will bring the “adjusted actual” in states such as New South Wales, Victoria, Queensland and Western Australia to a level more equivalent to the expected outputs. A more detailed picture of the outputs and staff resources used by the CEWT program are described in Table 4.7. As for the previous Figure 4.1, the expected annual outputs from the CEWT program for each Alzheimer’s Australia site are unweighted and should be not be considered in a direct comparison with the actual outputs.

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Course Development & Content Generally Alzheimer’s Australia sites developed new courses (not a modification of an existing Alzheimer’s Education product) for the Respite Worker program. For the Family Carers program, New South Wales and South Australia added additional content to their existing educational programs. Additional Staff Resources The ACT was the only site to employ a new person in a program manager role as a result of the CEWT funding. New South Wales used additional hours for existing management staff. The remaining sites used the program manager resources within the existing hours of employment. For staff directly involved with the training, all sites added additional training time for existing staff trainers or employed new or sessional trainers. Additionally, NSW, Victoria and the ACT added junior administrative staff hours to assist with the program.

Figure 4.1: CEWT Course - Expected & Actual Outputs (unadjusted for rural/remote & CALD)

37

27

1716

9

6

12

52

38

26

1617

8

3

12

10

0

10

20

30

40

50

60

NSW VIC QLD SA WA TAS NT ACT

Num

ber

of C

ours

es

Expected Actual

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Table 4.7: Course Outputs & Staff Resources due to CEWT Funding (2002/2003) State Type Expected

Annual Outputs (Actual -

unweighted)

Additional Content

Developed

Additional Staff - Program Managers

Additional Staff - Trainers

Additional Staff - Others

NSW

RW 36 (27+) New Course

Extra hours existing staff

Extra 1.5 staff + 5 sessional workers

1 Junior office assistant

FC 16 (10+) Enhance options

+ add to other programs

Extra hours for existing staff

Extra 2 days/week + above sessional

workers

Promotional staff - 1 day/week at

Carers NSW

VIC RW 22 (15+) Yes No Yes Yes FC 16 (12+) Yes No Yes No

QLD RW 26 ( 17+) Yes No Yes No FC Yes No Yes No

SA RW 10 (10+) Yes No Extra 0.6 staff No FC 6 (6+) No No No

WA RW 11 (4+) Yes No Yes No FC 6 (6+) Yes No Yes No

TAS RW 6 (8+) No No Sessional as required

No FC 2 (1+) No No No

NT RW 3 (6+)

2 staff full time

FC ACT

RW 7 (8+) Yes Yes for 25 hours per week

Sessional as required

Same staff for extra 5 hours FC 5 (4+) Yes

Total RW +FC 172 (134+) n/a n/a n/a n/a

4.8 Course Delivery Modes The main format for CEWT courses is traditional face to face delivery, with distance education and video conferencing as planned supporting formats. The distance education package was perceived as requiring more promotion and additional resources to adequately market the product to the sector. There were also concerns that access to computers for workers and carers may limit the use of this resource at least initially. Victoria, Western Australia and Queensland reported that they were planning in the near future to use delivery formats other than direct face-to-face training sessions. For example, Alzheimer’s ACT, NSW and WA planned to develop audio and video conferencing, and the Alzheimer’s Association Queensland teleconferencing, buddy systems and on-line delivery modes. An on-line ‘internet’ course delivery was considered a possibility for SA, QLD and Tasmania. Paper-based distance education was reported as a possible format for all other Alzheimer’s sites. Three sites – Western Australia, South Australia and Victoria have used the distance package to train Respite Workers however the numbers are very small to date to allow for any evaluation of this delivery mode.

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4.9 Course Session Locations CEWT courses (Respite Worker and Family Carer) were provided in locations from capital cities through to rural cities and remote locations in most states (Table 4.8) in the 2002/3 period. Session times were flexible and courses were held in morning, afternoon and evening timeslots (Table 4.9). The preference was to hold the sessions (course modules) over a number of weeks to improve the assimilation over time of the knowledge gained in each session with on-the-job experiences. This proved impractical for Respite Worker courses in the more remote areas where courses were often provided over a one or two week period (Table 4.9). Family Carer courses were generally more spread-out over a period of at least 4-weeks (Table 4.10).

Table 4.8: Planned Session Locations LOCATIONS NS

W VIC QL

D SA* WA TAS NT ACT

Capital City Large Rural City - na Remote/ isolated no na In-house facilities no Respite facilities Hire venues *SA reported that they do not cover remote areas because of the high cost of travel and accommodation .

Table 4.9: Planned Session Times for Respite Worker Course OPTIONS NS

W VIC

QLD

SA WA

TAS

NT*

ACT

Course in one week no no * One module per week for a month * One module per week for 8-weeks Morning * Afternoon Evening Other: consecutive days over weeks Rural - - Over 2 months - - -

Table 4.10: Planned Session Times for Family Carer Course OPTIONS NSW VIC QLD SA WA TAS NT AC

T In one week no no no no * One module a week for a month no request * One module a week for 6-weeks Morning request Afternoon request evening request request request * Weekend

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4.10 Approach to the Target Audience Course Participant Criteria Overview All sites except New South Wales, targeted workers from residential and community respite facilities. Residential facilities were only targeted in NSW if they were the main respite provider in a region as they believed that the residential facilities were not generally the main providers of respite. The Northern Territory was also targeting other non-residential-based health professionals, Victoria included HACC workers, Queensland planned to include students wanting to work in the aged care industry and Western Australia were including family and friends as required. Victoria, South Australia and NSW had specific plans to target entire services (all relevant staff) and not individual respite workers in a location. In the ACT the Family Carer course participant must be caring for a person with dementia and challenging behaviour. In New South Wales the Family Carer course participant must be the primary carer; Northern Territory will include volunteers working with people with dementia; Tasmania, Queensland and Western Australia will extend participation to family friends who are actively involved. NSW reported a large demand for their courses and therefore the need to limit entry criteria to strictly cover only carers of people with dementia. Some other states such as Tasmania reported they needed to expand their target audience to maintain group numbers. Provision for Participants with Literacy Challenges & Special Needs The majority of the states (excluding the ACT and Tasmania) are offering some level of internal developed support for those with literacy issues (Table 4.11). Queensland planned to offer verbal and pictorial assessments for those participants identified during the course as having literacy problems. Other literacy/language support systems include; a buddy system in Victoria, different assessment formats (oral, tape and interview in NSW) and unspecified different materials (NT and WA). In the ACT responsibility for literacy support is completed by their external Registered Training Organisation (RTO), ensuring participants will be assisted. In Tasmania people with severe literacy problems are directed to support services (eg. TAFE) and asked to reapply when their literacy skills have improved to a level adequate for course completion. No sites had a formal process for determining whether students had sufficient literacy skills to enable them to adequately understand the course materials and complete the assessments. This approach was believed too intrusive and sites preferred to assess the level of literacy at the first session and deal subsequently with any problems via special support approaches. The targeting and approach to participants with special needs is described in Table 4.11. Most sites, except South Australia, ACT and Tasmania, actively targeted people from culturally and linguistically diverse (CALD) backgrounds. Some sites made special efforts to link with CALD communities. For example, NSW formed a reference group of special needs groups to assist with course development and targeting, Queensland collaborated with ethnic community groups and provide at least one course per year in a language other than English and Western Australia had involvement in information meetings held with the Chinese, Italian and multicultural communities. Sites targeting people from aboriginal backgrounds included NSW, WA consulted with an ATSI liaison officer, NT and Queensland was participating in a research program with Queensland health to design and deliver a program to ATSI, South Sea Islander communities and isolated/outback communities.

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Table 4.11: Provisions for Special Needs Groups New South Wales Literacy To be identified during the course. As the RTO they are responsible for the literacy support and have

planned access to WELL to support people with language and literacy issues. NSW anticipated literacy would be an issue with assessments, consequently they will accept oral, tape and interview assessment formats.

Special Needs Groups

Targeting Culturally and linguistically diverse (CALD), ATSI & rurally isolated. Advisory Group for information about CALD, ATSI and rurally isolated requirements. Special needs groups are an important target audience (CALD/ATSI/rurally isolated) - reference group of special needs groups to have input into course content and how to reach the groups. Use of “gatekeepers” in rural areas to get access to workers and carers- e.g. Hunter area. Carers Association has funding to provide an extra worker for promotion of course to carers.

Victoria Literacy Literacy issues will be identified and support provided as required. A buddy system will be offered as

support and different materials are available for people with literacy issues (interview assessments). Special Needs Groups

Targeting CALD and rurally isolated, not targeting people from ATSI backgrounds.

Queensland Literacy Literacy issues to be identified during the course. Changes will be made to the assessments approach with

the use of verbal and pictorial assessments. Special Needs Groups

At least one carer education session per year will be conducted in language other than English in collaboration with ethnic community groups and other relevant bodies. Research program in progress for 3 years (2001-2004) with Queensland health to design and deliver program to ATSI, South Sea Islander communities and isolated/outback communities.

South Australia Literacy Participants are required to be of a suitable level of literacy to enter the course. Literacy issues will be

identified and participants supported throughout the course. The Student Handbook identifies the literacy support options.

Special Needs Groups

Not targeting people with CALD, ATSI backgrounds or those living in rurally isolated areas. Alzheimer’s South Australia indicated that rural and remote coverage was not possible because of the high cost of travel and accommodation.

Western Australia Literacy Participants with possible literacy problems are identified during the course and changes are made to the

assessment approaches. Special Needs Groups

Targeting people from CALD and ATSI backgrounds and those living in rurally isolated communities. Carers WA have been involved in information meetings held with the Chinese, Italian and multicultural communities and access to an ATSI liaison officer.

Tasmania Literacy Literacy will be identified in the first session and participants may not continue with the course depending

on the level of the literacy problems and amount of support required. Special Needs Groups

Not specifically targeting CALD /ATSI /rurally isolated, but will provide training wherever it is requested. Tasmania has access to free interpreter services.

Northern Territory Literacy Will identify and support those with literacy issues. For people with literacy or language difficulties, a

separate dementia training course for rural and remote carers/workers has been developed. This course may be accepted as a competency course for Certificate 2 in the future. NT Alzheimer’s has also developed a course for NT University which fits into Cert 4 Community services (Aged Care).

Special Needs Groups

Targeting CALD/ATSI/ Rurally isolated.

Australian Capital Territory Literacy Identify literacy issues and utilise the external RTO who will be responsible for addressing the issue before

the participant can continue. By using an external RTO Alzheimer’s ACT do not have to put resources into the literacy/ language supports.

Special Needs Groups

Targeting to CALD, ATSI maybe later. Rurally remote targeting is not applicable to the ACT.

Recognition of Prior Learning Assessments Recognition of Prior Learning (RPL) is where a participant asks to be assessed by recognition of their previous formal and informal experience. There are various modes of assessment available for RPL; by portfolio, challenge test or workplace assessment. The State project managers did not

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expect that many people would request RPL. The results from the data analysis indicated that only one person in the 12-month period to 2003 asked for RPL consideration. The ACT, NT and Tasmania use their external RTO’s for this aspect as the provision of RPL can be handed over to the external RTO. NSW had not finalised the assessment formats for RPL at the time of the completion of this report. SA and WA planned to accept portfolio, challenge test and workplace assessments for RPL. Victoria and Queensland planned to accept portfolio assessments for RPL. Table 4.6 highlights the large variance in costs (nil-$750) for RPL as reported by the various Alzheimer’s Australia sites. CEWT Course Costs Course costs per person varied across the States/ territories from $30 (Victoria) to $150 (South Australia). All sites did not charge Family Carers if they were participating in the 6 module course (Table 4.12).

Table 4.12: Course Costs Site Respite

Workers

Facilities Recognition of Prior Learning (RPL)

Family Carers- 6 modules

Family Carers- 8 modules

NSW $100 $100 / person $750 per person nil must be a

current carer nil but must be a current carer

VIC

$30 Negotiable Not confirmed nil -

QLD

$137.50 is negotiable Negotiable $500-$1000 $120 is negotiable nil nil

SA

$150 $150 a person No cost nil $150 a person

WA $100 Depends on numbers &

location $100 nil $40

TAS $60 $60 a person

Referred back to facilities with the resources to provide RPL

nil nil

NT $100 Unknown at present Unknown cost. nil to FC or

volunteer nil to FC or volunteer

ACT

$45 $1250 per 20 participants

Cost is set by RTO - unknown. nil nil

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4.11 Marketing Strategies All states used the general information sessions for marketing the CEWT program, and part of the role of State Carers Associations in every state was to actively promote the courses to family carers and service providers. A summary of the marketing approaches by sites is presented in Table 4.13. As courses were generally over-subscribed, marketing approaches were fairly conservative. Marketing approaches to lift consumer awareness used mostly traditional aged care networks such as promotions to staff from relevant agencies, distribution of course availability via newsletters, websites, promotional flyers and targeted mail-out programs to services. In terms of a strategic approach, the two largest states ‘segmented’ the market to allow a more focused approach. For example, NSW targeted community-based service providers and individual workers, Victoria used a rolling regional targeting approach to focus resources in defined geographical areas (Table 4.13).

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Table 4.13: Marketing Strategies New South Wales Marketing& Planning

Community-based service providers and individual workers targeted. Community carers and workers, not residential carers unless they are the main providers of respite in an area. 17 new services and some NHCP services were targeted. Extensive discussions between the NSW Alzheimer’s Australia and Carers NSW regarding the strategic planning approach for promotion of the course. Courses were promoted in Carers News and the Commonwealth Carer Resource Centre staff have been included in part of the marketing strategy.

Victoria Marketing & Planning

Residential and community care workers targeted. Victoria used their own networks to promote the course, these include community information sessions, flyers extensively used (regional people, support group newsletters, Alzheimer’s newsletters, to associated agencies (e.g. CADMS), website, Dementia Awareness Week, meetings with HACC, case managers, Commonwealth etc. Will focus on particular areas at certain times. The plan is to have a different focus in different years. 2002 will start in the Western Metropolitan area because it is under serviced. Interpreters will be used and a multicultural officer (CALD) has been funded. By focusing on a specific region at a time it is believed this will achieve the best possible efficiencies given the existing resources. For example, educators will be able to support the regional people better by economising on travel costs. Carers Victoria promote the course in their Information Packs and through their own Education & Training Courses, monthly newsletters to carers and service providers, and via networking with health professionals and respite workers.

Queensland Marketing & Planning

Targeting carers and workers in residential and community aged care. Advertising via flyers, AAQ web site, newspaper ads, mail-outs, community forums.

South Australia Marketing/ Planning

Targeting carers and workers in residential and community aged care. Advertising via mail-outs to residential care facilities, distribution of flyers, regional workers, helpline and information sessions.

Western Australia Marketing/ Planning

Alzheimer’s WA promoted the program to residential and community care workers. Carers WA also promote the course via the carers newsletter, news link and local community newspapers.

Tasmania Marketing & Planning

Targeting carers and workers in residential and community aged care. The marketing plan is supported by: a. Productivity Plus Tasmania (PPT): A government organisation that advertises education programs to all services throughout Tasmania through six-monthly calendars, flyers and newsletters. All HACC, Community Packages and SAP programs can be reached this way. PPT does the promotion, advertising and registration. b. Carers Association Tasmania does the advertising for the family carers course, and also target residential care places for professional and family carer courses. c. DAAT workers also advertise the courses when visiting carers (professional and family) and residential places, in newsletters etc. Carers Tasmania also promoted CEWT at service provider and network meetings and via mail outs to carers and service providers.

Northern Territory Marketing & Planning

Targeting professionals, respite care workers, carers and volunteers, will cover both residential and community workers. CEWT courses held in main regional centres (Darwin and Alice Springs) but advertise throughout the NT as people living in rural areas come into Darwin & Alice Springs to do the courses. Promotion by Carers NT has been through the HACC funded training body HK Training and word of mouth.

Australian Capital Territory Marketing & Planning

Targeting carers and workers in residential and community aged care. Carers ACT have participated in the information sessions.

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5. Project Outcomes: Knowledge of Challenging Behaviour

5.1: Introduction The effect of the CEWT course on the knowledge base of participants is reported in this section. The CEWT course targets many aspects of dementia care related to knowledge and understanding of behaviour (a more detailed description of the course content is outlined in Chapter 4.). Some of the topics in the CEWT program relevant to this section include:

• effective communication • understanding challenging behaviour • developing effective responses to challenging behaviour

To assess the impact of the CEWT program on these knowledge areas, Respite Worker and Family Carer participants were therefore asked to complete a series of knowledge questions that were targeted to areas that are considered fundamental to an understanding of behaviour and dementia. The set of questions were asked at the beginning of the first session (Time 1) and at the end of the last session (Time 2). As noted by Gilleard and Groom (1994), there is a need to have a brief questionnaire that assesses knowledge and understanding across a range of people in the community dealing with these issues. It is apparent that there have been few attempts to ‘measure’ this aspect. The questionnaire used in this project was a 9 item sub-set of a validated dementia knowledge questionnaire – the Dementia Quiz. It is a dementia quiz designed to assess carers and professional workers knowledge of dementia management issues and it has been used as an educational and evaluation tool assessing the impact of an education and information course such as the CEWT program. The questionnaire has reported reliability and validity (C. Gilleard & F. Groom (1994) British Journal of Clinical Psychology, 33, 529-534). To update the questionnaire for the Australian environment, it was reviewed by an expert panel of academics and educators and piloted in a low care residential care facility with direct care workers. Minor changes were made to the wording of some of the questions to reflect the feedback from the expert panel and pilot investigations. The final version of the questionnaire appears in Table 5.7. The questions deal with areas associated with the carers (family and paid carers) understanding of the problem and whether they should (i) re-frame the problem so as to minimise the issue (ii) understand the underlying issue and develop an intervention that is applied to the person with dementia (iii) change the behaviour of the carer so as to impact on the expression of the behaviour. Some questions have proven to be more difficult for participants than others. For example, Question 3 covering “If you disagree with a person with dementia and you know you are right, you should:” and Question 4 “If the person with dementia is alert and confused at night, the first thing to do is” elicited a number of incorrect responses as many participants focused on the symptoms and immediate issues without an analysis of the underlying triggers for the behaviour. However on all occasions there were more correct responses at Time 2 compared with Time 1.

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5.2 Respite Workers A detailed description of the Respite Workers attending the CEWT courses and completing the evaluation questions is covered in section 3.3. The great majority of course participants (64% excluding the non-specified category) were personal care or respite workers (i.e. not trained nurses). Around 25% had 12-months or less experience, another 15% between 1 and 2 years experience, nearly 25% between 2 and 5 years and one-third (33.1%) had more than 5 years of dementia care experience. The number of respite workers completing the Knowledge questions is described in Table 5.1.

Table 5.1: Number of Respite Workers by State ACT NSW NT QLD SA TAS VIC WA Total T1 (N) 89 129 47 92 73 38 106 42 616 T2 (N) 72 122 40 84 66 37 100 24 545 The percent correct by question is detailed in Table 5.2 and Figure 5.1. The range of percent correct varied considerably by question. The most difficult questions for Respite Workers were question 4 (57.8% correct Time 1 – the question focused on attitude) and question 6 (50.1% correct Time 1 – the question focused on development of a strategy). Respite Workers improved on all questions at Time 2. The improvement was statistically significant on all questions except questions 4 and 5. Further analysis was undertaken to examine the overall outcomes across all questions (Table 5.3). The overall mean for all questions correct at Time 1 versus time also showed a statistically significant improvement overall. The significant improvement on seven of the nine questions and improvement overall on the number of correct answers at Time 2 indicates that the CEWT training course was associated with an improvement in the knowledge based of Respite Workers participants.

Table 5.2: Respite Workers Percent Correct at Time 1 and Time 2 Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 T1(n=616) 74.8 74.8 64.4 57.8 76.5 50.1 69.2 72.1 64.5 T2(n=545) 86.4 84.9 74.3 59.6 80 62.9 80.4 77.6 79.6 Difference 11.6*** 10.1*** 9.9*** 1.8 ns 3.5 ns 12.9*** 11.2*** 5.5* 15.1*** Significance: *p<0.05; **p<0.01; ***p< 0.001 (test of equality of proportions using large-sample statistics)

Table 5.3: T-Test Of Respite Workers Knowledge Questions At Time 1 And Time 2 N Mean SD t Time One 616 6.04 2.35 Time Two 545 6.86 2.41 5.85 *** Significance: *** p< 0.001 (two-sample t test)

5.3 Family Carers Carers attending the CEWT courses were supporting people with dementia mainly living in domestic settings. Attendees were mainly wives (44%), husbands (19%), or daughters (12%). A minority of carers attending the courses were from a non English speaking background (14%). The number of respite workers completing the Knowledge questions by state is described in Table 5.4. The majority of carers completing the evaluation came from Victoria, Western Australia,

78

South Australia and the ACT. Given the small population base, the ACT achieved a very high participation rate in the evaluation for carers.

Table 5.4: Number of Family Carers by State ACT NSW NT QLD SA TAS VIC WA Total T1 (N) 32 40 3 37 28 0 67 54 261 T2 (N) 28 19 2 15 33 0 42 36 175 The percent correct by question for Family Carers is detailed in Table 5.5 and Figure 5.2. As was the case with Respite Workers, the range of percent correct varied considerably by question. The most difficult question for Family Carers was question 6 (40.2% correct Time 1 – the question focused on development of a strategy). Family Carers improved on all questions at Time 2. The improvement was statistically significant (Table 5.5) on seven of the nine questions (not significant on questions 5 and 6). Further analysis was undertaken to examine the overall outcomes across all questions (Table 5.6). The overall mean correct at Time 1 versus Time 2 for all questions combined also showed a statistically significant improvement for Family Carers. The significant improvement on seven of the nine questions (Table 5.5) and improvement overall on the number of correct answers at time 2 (Table 5.6) indicates that the CEWT training course was associated with an improvement in the knowledge base of carers undertaking the course.

Table 5.5: Family Carers Percent Correct at Time 1 and Time 2 Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9 T1(n=261) 65.9 57.85 54.4 61.3 68.2 40.2 55.9 58.6 59 T2(n=175) 81.7 76.6 69.7 72.6 73.1 43.4 78.9 73.7 72.6 Difference 15.8*** 18.7*** 15.3*** 11.3** 4.9 ns 3.2 ns 22.9*** 15.1*** 13.6** Significance: *p<0.05; **p<0.01; ***p< 0.001 (test of equality of proportions using large-sample statistics)

Table 5.6: T-Test Of Family Carers Knowledge Questions At Time 1 And Time 2 N Mean SD t Time One 261 5.2146 2.36 Time Two 175 6.4229 2.18 5.3926*** Significance: *** p< 0.001 (two-sample t test)

5.4 Comparison of Results for Respite Workers and Family Carers A comparison of the Respite Workers and the Family Carers responses at the end of the course (i.e. Time 2 responses only) demonstrated the following

• The percentage correct was not significantly different on four of the nine questions (Q1, Q3, Q7, Q8) at time 2 (Figure 5.3).

• The Respite Workers scored significantly higher on four of the nine questions (Q2, Q5, Q6,

Q9) at time 2 (Figure 5.3).

• The Family Carers scored significantly higher on Question 4 (Figure 5.3). While considering the overall percent correct indicated that Respite Workers achieved slightly higher outcomes, the difference was relatively small. A further comparison examined the improvement recorded for Respite Workers and Family Carers from Time 1 to Time 2 (Figure 5.4).

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• Family Carers improved more than Respite Workers on seven of the nine questions (Q1, Q2, Q3, Q4, Q5, Q7, Q8).

• Respite Workers improved more than carers on only two questions (Q6 & Q9).

While Family Carers were coming off a lower base at Time 1 (they had fewer percent correct compared with Respite Workers), their improvement during the course was much more significant than the Respite Workers. These results indicated that Family Carers could significantly improve their management and understanding knowledge of dementia from a structured course such as the CEWT program. Summary Both Respite Workers and family Carers significantly improved their level of knowledge of challenging behaviour as assessed by the Knowledge Questionnaire as described. While Respite Workers scored more percent correct answers overall at time 2, in general Family Carers improved more from their exposure to the CEWT training. The CEWT course has been successful in improving the knowledge base of both Respite Workers and Family Carer participants.

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Table 5.7: Knowledge Questions Please tick one answer per question

C1. If a person with dementia begins to wander, it is best to: C6. If the person with dementia is alert and confused at night, the first thing to do is:

1 not let them out of your sight so you always

know where they are 1 get sleeping tablets prescribed

2 provide daily walks and a secure stimulating

environment 2 put a night light in their bedroom

3 keep them in one room most of the time and only let them out

with supervision 3 make sure they have plenty of exercise /stimulation during the day

4 ask the doctor to prescribe sedatives

4 organise a break from caring and get someone else to help once a

week

5 don’t know 5 don’t know C2. If a person with dementia has poor short term memory

you help by: C7. If the person with dementia refuses to take a bath or shower you

should initially:

1 constantly repeating things to them until they sink in 1 be firm and insist that they need to have a bath regularly

2 provide them with memory aids such as diaries & notes 2 let the matter pass and try again later on

3 ignore their constant questions or tell them its not important 3 tell them not to worry and trust you as you know what is best

4 tell them to concentrate and put more effort into remembering 4 sponge them down in bed the next morning

5 don’t know 5 don’t know C3. If you disagree with a person with dementia and you know

you are right, you should:C8. If a person with dementia sees or hears things that are not really

there (hallucinate):

1 discuss it with them until your point sinks in 1 tell them clearly there is nothing there

2 avoid confrontation by seeking to distract them 2 comfort their feelings without denying or

acknowledging the hallucinations

3 make your point and if they don’t agree go back to it later on 3 pretend that you can also see and hear things and tell them there is

nothing to worry about

4 point out that they may be wrong because of their memory

problems 4 ask the doctor for medication

5 don’t know 5 don’t know C4. If you are embarrassed by the person with

dementia when you are in public, you should:C9. Once the person with dementia receives a

diagnosis of dementia you should:

1 simply leave the person with dementia at home when you go

out 1 take over as many tasks as possible to alleviate any added mental

stress

2 find excuses not to visit others and stay home

2 discuss with your doctor about placing the person in care as soon as

possible

3 explain to others what is the matter and hope they will make

allowances 3 encourage the person to be as independent as

possible

4 treat the matter as if nothing happened

4 carry on as usual and make sure the person

with dementia is unaware of any changes

5 don’t know 5 don’t know C5. If the person with dementia follows you

everywhere it is best to:

1 encourage them to stay in the one place

2 always tell them where you are going and what you are going

there for

3 ignore them completely and hope they stop

4 give yourself a break in another room

5 don’t know

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Fig 5.1: Respite Workers Knowledge Questions: Time 1 & Time 2

CEWT KNOWLEDGE QUESTIONS Respite Workers: Percent Correct

74.8 74.8

64.4

57.8

76.5

50

69.272.1

64.5

86.484.9

74.3

59.6

80

62.9

80.477.6

79.6

40

50

60

70

80

90

100

Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9

Time 1 Time 2

82

Fig 5.2: Family Carers Knowledge Questions Time 1 & Time 2

CEWT KNOWLEDGE QUESTIONS Family Carers: Percent Correct

65.9

57.9

54.4

61.3

68.2

40.2

55.958.6 59

81.7

76.6

69.772.6 73.1

43.4

78.9

73.7 72.6

40

50

60

70

80

90

100

Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9

Time 1 Time 2

83

Fig 5.3: Respite Workers vs. Family Carers Time 2 Comparison

KNOWLEDGE QUESTIONS TIME 2: % Correct Comparison

86.484.9

74.3

59.6

80

62.9

80.477.6

79.681.7

76.6

69.772.6 73.1

43.4

78.9

73.7 72.6

40

50

60

70

80

90

100

Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9

Time 2: Respite Workers Time 2: Family Carers

84

Fig 5.4: Respite Workers vs. Family Carers Improvement Index

KNOWLEDGE QUESTIONS IMPROVEMENT INDEX (T2-T1 % Correct)

11.6

10.1 9.9

1.8

3.5

12.9

11.2

5.5

15.115.8

18.7

15.3

11.3

4.9

3.2

23

15.1

13.6

0

5

10

15

20

25

Q1 Q2 Q3 Q4 Q5 Q6 Q7 Q8 Q9

Respite Workers: Time 2 - Time 1 Family Carers: Time 2 - Time 1

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6. Project Outcomes: Attitudes to Dementia Care

6.1: Introduction The CEWT course targets many aspects of dementia care related to the development of responses to challenging behaviour and most importantly, the attitudes that underpin many of the responses of professional carers to dementia care issues. In this regard some of the topics in the CEWT program include:

• impact on the person with dementia • impact on the family carer • person centred care • effective communication • understanding challenging behaviour • developing effective responses to challenging behaviour

As it was not possible to observe CEWT course participants in the work place before and after the course to determine how they implemented their learning, a method had to be developed to provide some indication of the effectiveness of the course in addressing these complex areas. A short story (vignette) and series of questions was therefore developed. The vignette contained information directly relevant to the course content and the series of questions were designed to measure the effectiveness of the participants learning in these areas. The short story (vignette) is about an elderly couple and some of the issues encountered when a partner has dementia. The questions were designed to assess and ‘measure’ the attitudes and knowledge base of participants about dementia, challenging behaviour and dementia care management. The questions covered the following domains;

• Person-centred care (history, preferences, behaviour) • Profiles/background information (history, preferences) • Effective communication strategies (speech, communication, intimacy) • Interventions for behaviours of concern (appropriateness, night disturbance, agitation) • Activities of living and pleasure (activity) • Role of family carers (preferences, appropriateness, intimacy)

As for the previous Dementia Knowledge Questionnaire, the vignette and questionnaire was reviewed by an expert panel of academics and educators (both Australian and overseas experts) and piloted in a low care residential care facility with direct care workers. Changes were made to the wording of some of the questions to reflect the feedback from the expert panel and pilot investigations. The final version of the questionnaire appears in the Appendix (12.5). There were eleven domains with around five questions within each domains. In total fifty-three questions were rated across the domains. For example, in the domain on challenging behaviour (Table 6.1 Domain 11) participants were asked to indicate on a scale from strongly agree to strongly disagree, “How much do you agree with the following statements”:-

• People with dementia would be easier to look after if they didn't try to deliberately make life difficult

• People with dementia have the ability to behave differently if they really want to

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• The behaviour of people with dementia can't be changed because it's due to brain damage • Dementia causes people to behave in certain ways but we have the ability to reduce the

problems • It is not that helpful to try and understand why a person with dementia behaves in a

problematic way - this doesn’t really help us fix the problems Each question has a maximum score of 1 for a correct response and some questions had two responses that were considered correct. The correct responses reflected non-judgemental attitudes and interactions or interventions that are not confusing or misleading to the person with dementia. The questions have been designed to promote further thought from the participants to discover the underlying principles of best dementia care practice. It should be emphasised that this exercise is a very difficult one for professional carers of any background. It requires a sophisticated understanding of the underlying concepts to achieve a high score. This questionnaire and vignette has been used in other contexts by the authors. Improvement in the percent correct index is not always achieved between the Time 1 and Time 2 assessments. Table 6.1: Question Domains

No.

Domain

Number of Questions

1 History of the person with dementia and their carer 5 2 Preferences of the person with dementia 5 3 Assistance required with eating and drinking 5 4 Appropriateness of some behaviours 4 5 Speech difficulties in dementia 4 6 Communication approaches 5 7 Intimacy- dealing with 5 8 Activity needs 5 9 Night Disturbance 5 10 Agitation 6 11 Behaviour management and understanding 5

6.2: Respite Workers All Respite Worker participants in CEWT courses were requested to complete this assessment at the beginning of the first session (Time 1) and the end of the last session (Time 2). The results show that the percent correct responses improved in ten of the eleven domains (Table 6.2, + sign). Only the intimacy domain showed a decrease in percent correct responses from Time 1 to Time 2. The improvements ranged from non-significant minor changes in the domains agitation (1%) , preferences (1.4%) and behaviour (2.2%) to larger statistically significant improvements in speech difficulties (5.1%), communication (4.9% ), history (8.6%) and activities (9.7%). Figure 6.1 illustrates the general improvement in the different domains. A further analysis combining all questions was undertaken to compare the mean total correct scores of participants at Time 1 and Time 2 (Table 6.3). The results supported the overall trend of improvement as there was a statistically significant increase in the percentage of correct responses at time two.

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The Respite Workers undertaking the CEWT course registered a significant improvement in the number of correct responses across the questions covered in the assessment focusing on attitudes and better care practices for people with dementia. In particular there were improvements in the areas covering:

• Social Profiles and background information (history) • Effective communication strategies (speech, communication) • Interventions for behaviours of concern (appropriateness – reframing problems) • Activities of living and pleasure (activity)

Table 6.2: Respite Workers Percent Correct at Time 1 and Time 2 No. Domain Time 1

(n=616) Time 2 (n=545)

Difference

1 History of the person with dementia and their carer 76.3 84.9 +8.6*** 2 Preferences of the person with dementia 77.4 78.8 +1.4 3 Assistance required with eating and drinking 53.9 57.7 +3.8 4 Appropriateness of some behaviours – reframing problems 60.4 66.5 +6.1* 5 Speech difficulties in dementia 66.5 71.8 +5.1* 6 Communication approaches 64.2 69.1 +4.9* 7 Intimacy- dealing with 54.1 51.5 -2.6 8 Activity needs 56.9 66.6 +9.7*** 9 Night Disturbance 53.9 56.5 +2.6 10 Agitation 70.1 71.1 +1.0 11 Behaviour management and understanding 69.1 71.3 +2.2 Significance: *p<0.05; **p<0.01; ***p< 0.001 (test of equality of proportions using large-sample statistics)

Table 6.3: T-test of Respite Workers Attitude questions at Time 1 and Time 2 N Mean SD t Time One 616 32.97 7.29 Time Two 545 34.83 7.57 4.2603 *** *** p< 0.001 (two-sample t test with unequal variances)

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Fig 6.1: Attitude Question Scores at Time 1 & Time 2

Applied Attitudes CEWT Respite Workers: Percent Correct

76.377.4

53.9

60.4

66.564.2

54.1

56.9

53.9

70.1 69.1

84.9

78.8

57.7

66.5

71.669.1

51.5

66.6

56.5

71.1 71.3

50

55

60

65

70

75

80

85

90

95

100

Histor

y

Prefe

rence

s

Assist

anceAppr

opriate

ness

Speech

Comm

unicatio

n

Intimacy

Activit

yNigh

t Dist

urbance

Agitatio

n

Behaviour

Time 1 Time 2

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7. Project Outcomes: Course Satisfaction

Respite workers and family carers completed a satisfaction questionnaire at the end of the 6 or 8 week course to assess their views on the general presentation of the CEWT course. These areas covered course services, course content, the course educators style and the impact on what they did back at the workplace or at home. Only the highest positive alternative is reported in Table 7.1 as the feedback was very positive in all areas covered in the questionnaire (i.e. if the options were strongly disagree, disagree, agree or strongly agree we report on the strongly agree response in Table 7.1). While all areas were very highly positively rated the most highly ranked areas were:

• Course understandable (75% rated overall as ‘very understandable’) • Educators style (78% rated overall as ‘very satisfied’) • Opportunity to ask questions (77% rated overall as ‘very satisfied’) • Encouragement of discussion (79% rated overall as ‘very satisfied’) • The interactions with educators (81% rated overall as ‘very satisfied’) • Gained new skills (75% rated overall as ‘definitely yes’) • Understanding of behaviours (76% rated overall as ‘very much better’) • Recommended to others (88% rated overall as ‘definitely yes’)

Table 7.1: Summary of Response Outcomes (most positive alternative reported) Question Workers % Carers% Total % Course Services (Strongly Agree) Understood what was expected 63 54 61 Received sufficient information on course 67 60 65 Staff assisted with my needs 69 72 70 Booklets were useful 70 75 72 Videos were useful 70 77 72 Time was suitable 58 58 58 Venue was suitable 58 58 58 Length of course suitable 53 56 54 Value for money 70 78 72 Course Content (Highest Quality) Met expectations 48 61 52 Familiarity of the information 53 64 55 Quality of the information 72 66 71 How understandable 73 80 75 Course Educators (Very Satisfied) Educators style 77 80 78 Opportunity to ask questions 77 79 77 Encouragement of discussion 78 80 79 The interactions with educators 82 80 81 Impact on Workplace Behaviour or Home Care Approaches (Definitely Yes) Improved understanding of dementia 63 77 66 Gained new skills 73 81 75 Understanding of behaviours 74 85 76 Managing dementia care 50 66 52 Changed day-to-day ability to manage 56 67 58 Changed ways of communicating 48 72 52 Improved knowledge of services 57 71 60 Recommended to others 88 93 88

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8. Project Outcomes: Impact on Caring for Family Carers

8.1 Introduction Family Carers were asked to complete an evaluation of the impact of caring for someone with dementia on themselves. The questionnaire collects qualitative information in a structured manner. This evaluation aspect was designed to provide service outcome information from the perspective of users. What are the specific behavioural problem areas for individuals and then did the CEWT program make a difference? This approach is sensitive to the diverse range of needs and problems of carers supporting people with dementia. A questionnaire was administered at Time 1 and Time 2 via the Family Carer Evaluation Forms with aall responses ‘self-rated’ by carers, information from time 3 was via telephone interviews. a) Family Carers were asked to select and rate the most important issues that impacted on their caring role To reduce documentation burden for carers, the questionnaire covering the important issues for carers was streamlined so that carers could select from a pre-determined list of the most frequently cited problem issues associated with caring for someone with dementia and challenging behaviour. Results from previous research were used to produce this list (refer Table 8.2 for a list of the issues). The questionnaire was administered at Time 1 (at course commencement) and Time 2 (at the final course session). The results are used to indicate if there had been a change in the amount of distress experienced by the participants on the specific problem areas they nominated at course commencement. It is important to note that this analysis is qualitative and designed to provide an insight into the issues. It does not provide quantitative data that is amenable to robust statistical analysis. b) Family carers were asked to rate the success of the CEWT course on assisting in these areas at the end of the six-week course? The question was part of the Time 2 questionnaire (at the final course session). For example, what were the behavioural problem areas for Family Carer participants attending the course and did the CEWT course make a difference to these specific areas? This approach represents a qualitative overview of the diverse range of issues and problems faced by Family Carers. c) Follow-up telephone interviews with a sample of family carers. What did carers feel were the longer terms impacts of the CEWT course on their ability to care? The data was obtained 4 months post the CEWT course via sixty-nine telephone interviews with carers that completed the course.

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8.2 Issues that Impacted on Caring Carers were asked to rate (Table 8.1) how affected they were on the issues as detailed in Table 8.2. We have reported only those issues that were rated as at least ‘Quite Badly’ affecting the carer. Only those carers that completed responses at both course commencement and completion are included in Table 8.2.

Table 8.1 Scale Used To Assess How Carers Were Affected By Particular Issues How affected by the specific issue

A little or none A Fair amount Quite Badly Very Badly Extremely badly Worst possible Only these rating included in Table 8.2

In terms of changes between the commencement and end of the course there were no consistent trends with the reduction of how badly carers felt they were affected by the problems as listed in Table 8.2. Out of the 18 issues listed in Table 8.2, 10 showed a decrease in the number of carers that rated the issue as at least ‘quite badly affecting them, six issues showed an increase from course commencement and there was no change in two issues. The issues that were of most concern to the carers attending the CEWT course are highlighted in Table 8.2. The issues that were most of concern were:-

• Observing the ongoing loss of independence and skills (av.47% of responses over time 1 & 2) ) • Memory problems that caused distress for day-to-day care and support (av.45% ) • Burden of caring e.g. stressed, constant reliance, no escape (av.31% ) • Grief & Loss issues (av. 29%) • Restlessness, anxiety or agitated behaviour (av. 28%) • Disruption with personal or family relationships (av. 26%) • Irritability and argumentative behaviour (av. 25%)

Table 8.2: The Impact of Caring – Commencement & Completion of Course Results ISSUES - at least ‘quite badly’ affecting family carers Time 1

N=54

Time 2

N=43

Ave. T2 & T1 significance1

Observing the ongoing loss of independence and skills 43% 50% 47% ns Memory problems - impact on daily interactions 42% 47% 45% ns Burden of caring (e.g. stressed, constant reliance, no escape) 33% 29% 31% ns Grief & Loss issues 29% 29% 29% ns Restlessness, anxiety or agitated behaviour 26% 29% 28% ns Disruption with personal or family relationships 29% 23% 26% ns Irritability and argumentative behaviour 25% 25% 25% ns Safety concerns 28% 20% 24% ns Depressed and withdrawn 22% 26% 24% ns Social isolation for the family carer and/or person with dementia 25% 21% 23% ns Resistive or not co-operating with support and care 25% 19% 22% ns Night time disturbance (e.g. wandering, sleep problems, disorientation) 19% 17% 18% ns Physical demands of caring 17% 18% 18% ns Financial issues 18% 17% 18% ns Seeing or hearing things that aren’t there, false suspicions 19% 14% 17% ns Incontinence 14% 11% 13% ns Verbal threats, yelling/screaming, constant noisiness 11% 12% 12% ns Physical aggression (e.g. pushing, shoving, hitting, slapping) 10% 8% 9% ns *Areas highlighted directly related to the carer – other issues more person with dementia related 1 Significance T1/T2: *p<0.05; **p<0.01; ***p< 0.001 (test of equality of proportions)

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8.3 Rated Success of the CEWT Course on Specific Carer Issues Family Carers were also asked to rate (Table 8.3) ‘how successful was the course’ assisting with each issue they had rated in Table 8.2 (issues that had an impact on their caring role). For the purposes of this analysis we combined the categories into 1. ‘Most or Somewhat unsuccessful or no change’; 2. Successful to a small extent and 3. Mostly or Extremely Successful’.

Table 8.3 Scale Used To Assess How Carers Were Affected By Particular Issues How successful was the course in assisting…..

Mostly unsuccessful

Somewhat unsuccessful

No real change Successful to a small extent

Mostly successful

Extremely successful

1 2 3 The majority of respondents (more than 50%) rated the course as having at least some degree of favourable outcomes in 13 of the 18 areas. The mostly or extremely successful areas were those associated with knowledge gained from the course that assisted carers deal with the ongoing deterioration and loss of skills. The most successful issues involved the CEWT course assisting with the understanding of the ongoing loss of independence and skill (68%), managing memory problems (64%), dealing with ‘helping the carer’ – eg social isolation for the carer and dealing with grief and loss issues (61%).

Table 8.4: How Successful Was The Course On Assisting With…… (N=136) %

Most/Somewhat unsuccessful or

no change

%

Successful to a small extent

%

Mostly or Extremely successful

Observing the ongoing loss of independence and skills 19 13 68 Memory problems - impact on daily interactions 18 18 64 Social isolation for the family carer and/or person with dementia

18 21 61

Grief & Loss issues 24 15 61 Burden of caring (e.g. stressed, constant reliance, no escape)

19 23 58

Restlessness, anxiety or agitated behaviour 27 16 58 Irritability and argumentative behaviour 29 17 55 Disruption with personal or family relationships 26 20 54 Safety concerns 26 22 52 Resistive or not co-operating with care (e.g. dressing, eating, medications)

34 14 52

Verbal threats, yelling/screaming, constant noisiness 38 10 51 Depressed and withdrawn 28 21 51 Seeing or hearing things that aren’t there, false suspicions 34 16 51 Physical aggression (e.g. pushing, shoving, hitting, slapping)

39 11 50

Night time disturbance (e.g. wandering, sleep problems, disorientation)

37 14 49

Physical demands of caring 39 14 47 Financial issues 43 10 47 Incontinence 40 14 47 *Areas highlighted directly related to the carer – other issues are related more to the person with dementia

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8.3 Family Carers at 4-Months Post Course Follow-up Sixty-nine Family Carers were followed-up at approximately 4-months after completion of the CEWT course to determine if they felt the course helped them manage with caring issues in the longer term. The follow-ups were completed by telephone and organised on an individual basis. The telephone discussions took around 30 minutes on average and carers were very keen to participate. Only one carer declined to participate from the 70 contacted for the follow-up interviews.

A summary of the overall rating by carers on the long-term impact of the course is described in Table 8.5. Overwhelmingly, carers believed the course had been very helpful in the longer-term. Nearly 8 in 10 of the found the course very helpful and nearly a further 2 in 10 found it quite a bit helpful.

Table 8.5: Long term summary impact of how helpful course was (n=69)

Rating of Longer Term Impact

Percent at 4-months follow-up

Very helpful 77% Quite a bit helpful 16% A little helpful 7% Not at all helpful 0% Total 100% The specific areas that carers indicated as most helpful in the longer term included:-

• Knowledge or information about dementia & behaviour management suggestions (38% of responses)

• Coping, coming to terms with the inevitability of loss, changing your attitude to dealing with the future (20% of responses)

• Sharing experienced during sessions - reduces loneliness, gives support & encouragement (19% of responses)

• Respite information was helpful – it provide knowledge, help give ‘permission to try it and reduce the guilt associated with asking for this type of support (8% of responses)

The knowledge and information that was provided was the most acknowledged aspect of the course and regarded as what provided the most long-term benefit. Information on dementia symptoms, progression and behaviour management assisted carers understand, plan and cope with the future. Carers also indicated the group sharing had a positive impact on their ability to cope.

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It is essential to note that most carers involved in the course were dealing with problems, issues and adjustments that were changing over the period of the course and additionally many ‘new’ issues were emerging. Given the complexity of the problems it was not surprising that while the course was rated in general by carers as very helpful most of the time, many of the substantive issues related to caring remained or even worsened over the longer term. This is to be expected as the carers participating in the course were supporting people with a degenerative disease such as dementia and associated conditions. It must also be noted that many carers in the course were also of advancing years and that they also had a range of health problems and dependencies that placed changing demands on their ability to care. We received many comments such as “husband has deteriorated markedly since course and this has led to significant increases in problem areas”. The evidence provided by carers is that the course did materially assist them with their tasks but that the changing circumstances necessitates on-going ‘individualised’ support to maintain the gains and provide a sense of support ‘as needed’. The range of issues raised by carers included (i) concerns that their loved one was being appropriately supported when placed in a residential care environment, (ii) safety at home issues if the person with dementia was living alone (eg. wandering, using stove) and (iii) financial concerns. These issues involved three key areas that provided a ‘theme’ through many of the interviews. 1. The extreme difficulty of dealing with the ongoing deterioration of a loved one – the emotional and psychological effect on family members cannot be underestimated. 2. Behaviour Issues: managing physical care is one aspect but the issues many spouses and their adult children found most difficult were the behaviours (eg. agitation, verbal abuse) exhibited in domestic environments. 3. Caring for the Carer: there was an acknowledgement that (i) carers were often not well enough supported by other family members (eg. one does it all), (ii) spouses were usually elderly with their own health problems and physical impairments and were often on the edge of being able to manage and (iii) the generational impact when a person with dementia is cared for by a daughter/son, their husband/wife and the grandchildren who are often growing-up and struggling with their own issues related to those typical of emerging adults.

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8.4 Family Carers Feedback On ‘How The CEWT Course Could Be Further Improved’ While Family Carers were overwhelmingly positive about the benefits of the CEWT course, the telephone interviews at 4-month post course follow-up elicited some comments by carers that should be considered when reviewing the Family Carers course. The comments have been summarised under the headings of course structure and approach, course content, integration of the course with ongoing supports and access and availability. Many of the issues raised by carers relate to the broad curriculum of the CEWT program and the difficulty in a group setting of addressing all the individual needs. Many participants would have liked some follow-up to address their particular issues related to caring. The comments are summarised as follows:-

Course Structure and Approach

• “Sessions at time too much like the ‘classroom’ – too ‘teachy’ and not enough interaction and discussion with participants and the issues relevant to the group”

• “Wanted to hear more of others experiences and more sharing but session plan had to be followed”

Course Content – more specific strategies and detail desired

• “Course tried to cover too many areas so not enough time for us to discuss how this information was relevant - too much breadth at expense of depth”

• “Wanted more on strategies and solutions for problem areas” • “Sessions too structured” • “Information and suggestions not practical enough for day-to-day issues faced by carers” • “Would like more information about later stages of the disease and the eventual outcome” • “Course did not cover financial issues which are very important” • “Couldn’t transfer the course information when the person with dementia deteriorated”

Integration of Course with Ongoing Supports – want the service to precipitate follow-up

• “Follow-up contact is very important” • “Disappointed that there was no follow-up call”

Access and Availability to CEWT Courses – not generally available

• “Course has limited availability” • “Course needs more advertising”

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9. Respite Issues There were three occasions when information was collected on respite use. The data were used to investigate respite issues and the impact of the CEWT course on respite uptake. These three time periods comprised:- 1. Time 1: Information on the use of respite by Family Carers at course commencement (what types of respite they had used and if they encountered any barriers to accessing respite) 2. Time 2: Information on the use of respite by Family Carers at course completion (what types of respite they had used and if they encountered any barriers to accessing respite) 3. Time 3: Further information on respite usage at the Family Carer follow-up interviews, 4-months after the carers had completed the CEWT course (more detailed questions about respite as this was via a personal telephone interview).

9.1 Use of Respite The carers who indicated they had used respite were asked to provide information about the type of respite they used (multiple selections allowed) over the three data collection periods. There were 304 carers completing information at course commencement (Time 1: n=304) and 175 carers completing information at the end of the course (Time 2: n=175). Time 3 was designed as a smaller telephone interview sample for a 4-month post-course follow-up (n=69). While it is likely that there was a degree of selection bias associated with carers receiving some form of respite more likely agreeing to be followed-up, it is still significant that in absolute terms, more people were using respite at course completion (Time 2) compared with course commencement ( n=77 versus n=98) . This trend is statistically significant based on chi-square calculations.

Table 9.1: Extent of Respite Used T1: First

CEWT Session

T2: End of CEWT Course

T3: Four month follow-up

Respite users (any type) and sample size across the three time periods

25.3 %

n=77

56.0%

n=98

78.3%

n=54

Total sample size 304 175 69

Significance Time 1 vs. Time 2: (p>0.001)

Significance Time 2 vs. Time 3: (p>0.01)

Significance Time 1 vs. Time 3: (p>0.001)

Table 9.2 Type Of Respite Used Informal eg. family or friends in their home 9.2%

n= 28

30.3%

n=53

50.7%

n=35

Formal in-home eg. HACC respite, personal carer 6.3%

n=19

20%

n=35

43.5%

n=30

Formal in-community e.g. day centres, residential care

17.1%

n=52

29.7%

n=52

43.5%

n=30

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Total sample size 304 175 69

Note: The total number of cases in the columns may not sum to the total sample size since carers were able to indicate multiple selections. A change in the pattern of respite type used can also be ascertained from Tables 8.1 and 8.2. As well as an increase in informal family type respite (T1 n=28 - 9.2%; T2 n=53 - 30.3%; T3 n=35 - 50.7%) there was also an increase in Formal in-home HACC type respite services from 19 people at Time 1 (6.3%) to 35 people at Time 2 (20%). Percentage wise, the increase was also evident at Time 3 (43.5%). Overall, Home based respite (formal or informal) showed the largest increase in use. This matches the information from our interviews that one of the main barriers to using respite is the reluctance of the person with dementia to accept respite. Respite at home is more likely to be acceptable to the person with dementia because they remain in a familiar environment and it avoids some of the resistance involved in preparing, travelling and being accommodated in an unfamiliar location.

These results are indicative rather than definitive because of the possible impact of the reduced number of cases in the Time 2 and 3 samples. However the results do provide a consistent trend across the time periods with more people in absolute terms using formal in-home HACC type respite options at Time 2 in comparison with Time 1. It is likely that participation in the CEWT course assisted with the uptake of respite in these areas.

9.2 How Helpful Was The Respite? Carers also rated at the 4-month follow-up ‘how helpful the respite they used was’. This was recorded on a four point rating scale from ‘very helpful’ to ‘not at all helpful’. As the ratings were very positive for all respite types, only the ‘very helpful’ selection is reported in Table 9.2.

Table 9.3: How Helpful Was The Respite Type of Respite N Very helpful

Informal (eg. family or friends in their home) 35 83%

In-home services e.g. HACC respite, personal carer 30 77%

In community services e.g. day centres, residential care 27 90%

Respite in residential care and day centres was regarded as consistently very helpful (90% of carers). Other forms of respite were also viewed as very helpful including informal at home (83%) and in-home HACC type respite (77%). A sample of nine people agreed to discuss why they had recently started using respite after the CEWT course. Their responses are as follows:

• Six people reported the course had encouraged them to start using respite because of their increased knowledge, awareness and decreased guilt associated with placement

• Two carers required assistance to meet the physical care needs of the person with dementia (help with activities of daily living)

• One carer indicated that respite supported their family needs and provided more time for children and extended family interactions

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It is apparent that once carers have experienced a respite option it does provide significant relief and assistance with their caring role.

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9.3 Effect of CEWT Course on Specific Aspects of Respite (i) Respite Information At the 4-month follow-up interview, carers were asked to report if the CEWT course had been successful in increasing their level of information about respite services. Carers were very positive about the impact of the course on their understanding of respite services, even four-months after they had completed the course. Over 9 in 10 carers followed-up indicated (Table 9.4):

• they had a better understanding of respite services since completing the course (93%) • they felt that the course taught them how to access respite services (91%) and; • the course provided guidance on the situations they might consider using respite for (93%).

Table 9.4: CEWT Course Informed About Respite Services? Follow-up participants were asked (n=69) YES NO Already knew

about respite ‘Did you have a better understanding of respite services since completing the course?’

93% 3.5% 3.5%

‘Has the course taught you how to access respite services?’ 91% 5% 3.5%

‘Has the course taught you for what situations you might access respite services?’

93% 2% 5%

(ii) Effect of the CEWT course on Family Carers Attitude to Respite Carers were asked at the 4-month follow telephone interview to indicate (i) ‘how comfortable were you before the course about asking for respite services?’ and then ‘how comfortable are you now about asking for respite services?’ The responses are described in Table 9.4. Carers indicated they were much more comfortable about using respite services at the 4-month follow-up. While 43% indicated they were either very or quite comfortable about asking for respite before the course, after the course there attitudes to respite had improved and 95% of carers indicated they were now very or quite comfortable about asking for respite. The results indicate that the CEWT course did have a very positive impact on the attitudes of carers toward respite. They were much more likely to ask for respite services after completing the CEWT course.

Table 9.5: Comfortable Using Respite Services (i) how comfortable were you before the course about asking for respite services?

(ii) how comfortable are you now about asking for respite services?

i) Before Course ii) After Course

No. Percent No. Percent

Very comfortable 17 30 45 78

Quite comfortable 8 13 10 17

Not really comfortable 12 21 3 5

Not comfortable 21 36 - -

Total 58 100 58 100

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(iii) Effect of Using Respite on Stress Levels Carers that had used a respite service were also asked to indicate if the use of respite had helped to lower any stress associated with being a carer. The responses (Table 9.5) indicated that most carers believed they were either much less stressed (58%) or less stressed after using respite (33%). Only 9% of carers indicated there was no change to their stress levels after the use of respite.

Table 9.6: Did Respite Lower the Stress of Caring Rating of Stress levels after Respite N Percent

much better (much less stressed) 26 58%

better (less stressed) 15 33%

no change 4 9%

worse (more stressed) - -

much worse (much more stressed) - -

Total 45 100%

9.4 Barriers to Respite Participants were asked about any barriers they had encountered in trying to use respite care at registration (Time 1), the completion of the course (Time 2) and at the four-months follow-up (Time 3). The results are described in Table 9.3. Barriers were grouped into four types (Respite Services, Carer/Family, Person With Dementia, Respite Not Required) and the percentage of responses for each of the four types is provided in the shaded lines. The data for individual barrier s is also provided.

Table 9.7: Barriers Encountered With Respite Respite Barriers as Reported by Carers Time 1% Time 2% Time 3 % Respite Service Issues 34% 47% 48% not enough available 10.9 11.5 13.8 no flexibility in times 6.9 10.1 12.8 need to know the service before I will use them 4.7 7.9 2.1 none in area 4.4 6.5 5.3 not appropriate type – culturally, linguistically, age etc 3.6 6.5 2.1 bad respite experience 2.9 3.6 5.3 high costs, big group size, lack of staff expertise 0 1 6.4 Person with dementia issues 47% 33% 44% person with dementia does not want to use respite 21.7 16.6 23.4 person with dementia doesn’t label self with dementia 19.9 12.9 17.0 person with dementia – too sick 4.4 3.6 3.2 Carer or Family Issues 10% 12% 8% lack of knowledge about respite services 7.6 7.2 1.1 mobility or transport issues restricts access 1.8 4.3 1.1 uncomfortable seeking respite 0 0 5.3 Not required 9% 9% 1% do not need the service 5.1 2.9 1.1 do not label self as a carer 9 5.8 0 Total Responses 276 (100%) 139 (100%) 94 (100%)

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The major barriers as perceived by carers can be summarised as:-

1. Respite Service Issues – lack of availability, little flexibility in the times provided, and lack of staff expertise with the local respite service were the most significant. This group of barriers rated the highest overall (av. 43% of barriers indicated over all time periods).

2. Issues around the person with dementia – these issues accounted for a significant number of

reported barriers by carers (av. 41% over all time periods). The resistance to respite by the person with dementia was single most important barrier to respite use.

3. Carer or family issues – lack of knowledge, transport or uncomfortable about seeking respite

(av. 10% over all time periods) The most commonly barriers reported by carers involved the person with dementia strongly resisting respite placement (e.g. ’Mother doesn’t like enclosed areas and hates locked doors so “freaks out” in respite centres’). Carers therefore often preferred ‘in home’ services because then the person with dementia may be more amenable to respite in a familiar surrounding or with familiar people. Families also feel they have more control over the specific service that is provided when it is delivered ‘in-home’.

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10. Project Outcomes: Service Provider Feedback

10.1. Introduction – Overview of Participating Respite Services The Services Alzheimer’s CEWT sites were asked to provide a list of Respite Service Providers who had attended the CEWT course in the 2003 year for the evaluation. Services were then chosen at random and contacted about participation Thirteen Respite Providers subsequently agreed to be interviewed in depth via telephone with most interviews being held over two sessions comprising around 45 minutes in total for each service. The services were interviewed around 6 months after their ‘last’ staff member had attended a course. The service provider interviews indicated that a range of agencies have accessed the CEWT course and provided feedback for this survey. The respite services interviewed ranged from those providing respite beds in high, low, or secure dementia units through to those providing personal carers for overnight care in the client’s own home. The services provided respite services for a range of clients from different age groups, socio-economic and cultural backgrounds. Respite Services Staff Five of the 13 services in the sample had sent 5 or fewer staff to a CEWT course. Three of the 13 services had sent between 6 and 19 staff, and five of the services had sent more than 20 staff. The respite service providers that participated in this evaluation aspect represented over 300 individual staff members. The staff held a variety of positions from care workers with varying levels of qualifications (personal care assistants, enrolled and registered nurses), to service managers and coordinators and non direct care staff (domestic, kitchen, cleaning staff). The respite staff were expected to have a minimum of Certificate III and some provided in service programs for lifting, first aid and other care practice issues (5 out of 13). The level of spoken English of staff was formally assessed in six of the services and reading, writing and comprehension skills in five of the services.

Access to Respite Service All services had at least an informal level of criteria for admission and discharge with only three services using written formal criteria for both admissions and discharges. Referral forms and assessments were the most cited format of formal criteria. There was a more extensive approach to admissions (10 services used formal criteria) while discharge criteria was more likely to be informal (8 services) e.g. when service no longer needed. The depth of information collected at admission varied between services with one service collecting information ‘as required’ and others collecting extensive information for high care needs in a hospital setting.

Most services reported that they did not have specific limitations on who could access their respite services. However problematic behaviour was mentioned specifically by two services as a factor that would limit access. The most common cited behaviours of concern were verbal and physical aggression, refusal of hygiene and refusal of services. The issue of wandering was frequently raised as an issue that would limit the suitability of a person for respite support.

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Referrals Many of the clients receiving respite services were provided with referrals to assist their situations. The most common referrals were to other health, rehabilitation issues and mental health services. Some services extend their referrals to cover all aspects of the person’s need i.e. three services referred out for legal advice.

10.2. CEWT Course Feedback from Respite Providers

Knowledge of the CEWT Course Respite services heard about the CEWT course from distributed fliers and Alzheimer’s Australia advertising and informal networking. The service providers appeared to be very aware of the course content covering challenging behaviour and dementia. Fewer services realised that the course also covered information about respite services and some legal aspects (Table 10.1). One provider expected information in the CEWT course to cover medication issues covering the new dementia drugs and associated matters such as adverse side-effects.

Table 10.1: Respite Services Views on CEWT Courses Content Topics N Managing challenging behaviour 13 Dementia information 13 General skilling of staff 10 Skilling of staff to deal with people with dementia 11 Learning about respite services 3 New dementia medications & side effects 1 Legal aspects 1 No service provider interviewed was aware of the existence of the distance education version of the CEWT. When asked about their interest in using this alternative, providers indicated: some providers thought that the distance education version would lessen the value of the course

as it was the interaction and sharing of case-studies that really benefited many staff Some felt that their staff would not be that interested or able to manage a distance education

version in their own time. In these instances the staff were mainly care workers and many worked part-time in rural settings and had other duties to perform outside of work hours.

Service Provider Views on the CEWT Course There was unanimous agreement from the service providers interviewed that the course was highly relevant and effective (100%). All Service Providers interviews were more than satisfied with:

• The scheduling of CEWT courses • The travelling distance to get to the courses • The style of presentation • How the CEWT programs were managed and run • The content and coverage of the CEWT course

Service providers consistently mentioned that staff reported that the presentation style was simple, specific and practical. The course was flexible because it was modified to meet needs of individual

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participants. For example, the use of verbal assessment for care workers that had a low levels of English literacy. Service providers managers did not receive any negative comments from those staff who attended the course (as noted previously, the service providers interviewed had sent over 300 staff to the sessions). It was mentioned by some managers that a number of staff had been negative about attending the course initially as they felt it would not be of much benefit. However, these staff became convinced that the course was beneficial over the period of their attendance. Service provider managers frequently cited that the style on which the material was presented and discussed had been received very positively by participants. The sharing and discussion time was particularly welcomed by those supporting people with dementia and behavioural issues. Ongoing Use of CEWT Course Material Information regarding the methods of transference of course content back to other staff at the workplace are described in Table 10.2. The information was reported as being transferred to at least some extent, for other staff to benefit. The methods include the informal ‘word of mouth’ via lunch and morning tea times and discussions at staff meetings, through to the more formal approaches. These involved written information distributed and displayed on notice boards, buddy systems that paired staff who attended the course with others that did not and the nomination of the people that attended the courses as the service ‘resource person’. These approaches may assist with dissemination of information and promote broader learning in the organisations that participated in the CEWT program.

Table 10.2: How CEWT Information Is Used Transferred Method of Sharing CEWT Course Information N Informal word of mouth 13 Sharing during staff meetings 7 Sharing during work – staff who attended course act as “buddies” to those that did not 3 Materials obtained from course shared around / form staff resource folder 3 Staff who attended course become a resource person and others referred to them 2 Written comments regarding course (notice board/newsletter etc) 1 Written assignments (eg: case study to apply skills learnt at course) 1 Did the CEWT Course Improve Knowledge, Attitudes and Management of ‘Challenging Behaviours’ All service providers reported that they believed the course had improved knowledge, attitudes and management of ‘challenging behaviours’ in their organisation. There were many positive comments about the impact on staff practices, indicating that the knowledge and attitudes are also demonstrated in new skills. For example there were comments that staff:

• “are learning to understand what is behind behaviours” • “are implementing strategies to reduce problems” • “attempt to use a range of strategies (distraction, redirection etc) now” • “look for triggers to ‘problem’ behaviours” • “are better at history taking and case notes” • “know what to look for when trying to assist with behaviours” • “know more about the disease” • “try and understand the persons needs” • “focus on positives and rewards” • “talk over the issues with other staff, medical people, family members”

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• “don’t take behaviour as personally directed at them anymore” • “understand the importance of referrals for expert help” • “are coping better with their job” • “feel more empowered and in control of difficult situations”

Managers of the respite services also commented that there were positive outcomes for the clients and families as the staff have increased their understanding of the needs the person receiving the respite and the associated family members. For example managers commented that their staff were more likely to:

• “provide the client (person receiving respite) with choices” • “look for ways to improve the dignity of client” • “encourage families to be more involved in care planning and have discussions with

staff” • “try and understand the perspective of the family and person receiving respite” • “pass on any knowledge they have to families to help them better manage” • “refer families to other specialist resources” • “be generally more supportive of families” • “make attempts to improve communication with families”

10.3. Future Development Suggestions by Respite Providers Service providers were overwhelmingly impressed with the CEWT course and the benefits. However their education and training needs continue and they believed that availability of the program was too limited. Services wanted more courses and in particular, increased provision in rural areas that are often overlooked because of the demand in metropolitan centres. A number of respite service managers also suggested that the cost of the CEWT course for the service was high and limited their ability to cover all relevant staff. There was a need expressed by managers for:

• More advanced courses with a specific focus • Increased content on communication skills and how to work better with families • Advanced managing loss and grief counselling training

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11. Appendices

11. Appendices

1. Typology Form

2. National Registration Form for Respite Workers

3. National Registration Form for Family Carers

4. National Course Feedback Form

5. Evaluation Form- Respite Worker Time One

6. Evaluation Form- Respite Worker Time Two

7. Evaluation Form- Family Carer Time One

8. Evaluation Form- Family Carer Time Two