INTERAGENCY DEMENTIA CARE PLANNING PROTOCOL to assist transitions in care for people with dementia and their carers’ at home.

Moonee Valley Melbourne Primary Care Partnership

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Published by the Moonee Valley Melbourne Primary Care Partnership, September 2007.

This protocol was developed by Alzheimer’s Australia Vic, through Moonee Valley Melbourne Primary Care Partnership Dementia Transition Care Project. The project was funded by the Department of Human Services (DHS) to address priority areas and strategies identified in the DHS Pathways to the Future – 2006 and Beyond Dementia Framework for Victoria for improving client and carer experiences, services and support.

The project team consisted of: Project Manager: Rosanna Spanio, Alzheimer’s Australia Vic Lead Consultant: Heather Michaels Specialist advice was provided by staff of Alzheimer’s Australia Vic. Copies of this document can be obtained from: MVM PCP 115 Melrose St North Melbourne Victoria 3051

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Contents 

Introduction............................................................................................................................................... 4

Aim of the Protocol............................................................................................................................... 4

Dementia and service coordination....................................................................................................... 5

When should this Protocol be used? ..................................................................................................... 5

The Protocol in Operation......................................................................................................................... 7

Definitions............................................................................................................................................. 7

The Interagency Care Planning Process................................................................................................ 8

Process Diagram for Interagency Dementia Care Planning Protocol ................................................... 9

Interagency Dementia Care Planning Protocol Practitioner Checklist ............................................... 10

Appendix 1: Consumer Outcomes and Good Practice Indicators – Care Planning ............................ 13

Appendix 2: Dementia and Transition ................................................................................................ 14

Appendix 3: Useful Principles ............................................................................................................ 16

Appendix 4: Dementia Specific Issues: Considerations for Coordinated Care Planning ................... 17

Useful Resources ................................................................................................................................ 20

 

Introduction

Aim of the Protocol The Interagency Dementia Care Planning Protocol has been designed for use at times of transition in the caring process when coordinated care is required for a person with dementia.

The Protocol details the processes for the development of the Service Coordination Plan (SCP) and is adapted from the existing Moonee Valley Melbourne Primary Care Partnership (MVC PCP) generic Interagency Care Planning Protocol. The generic protocol included the development of practices and processes around multi-agency care planning including operationalising the Service Coordination Plan (SCP) and determining the role and nomination of the key worker in this process.

Since the finalisation of the generic Protocol Primary Care Partnerships Victoria has developed the Victorian Service Coordination Practice Manual (2007). This document outlines:

• An agreed standard across the State for how agencies work together to improve consumer care • Service Common concepts and language to ensure improved Service Coordination across sectors • An improved approach that enables organisations to be fully engaged in the principles behind

Service Coordination

The Interagency Dementia Care Planning Protocol is consistent with the Good Practice Indicators – Care Planning of the Victorian Service Coordination Practice Manual. The Consumer Outcomes and Good Practice Indicators for Care Planning are included as Appendix 1.

Used throughout the document to direct the practitioner to relevant documents and resources

 

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Dementia and service coordination Dementia is a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language and judgment. Consciousness is not clouded. The impairments of cognitive function are commonly accompanied, and occasionally preceded by deterioration in emotional control, social behaviour or motivation. This syndrome occurs in Alzheimer’s disease, in cerebrovascular disease, and in other conditions primarily or secondarily affecting the brain. (World Health Organisation, International Classification of Diseases, 2003)

Most dementias have an insidious onset and usually progress slowly. The effects on the brain are cumulative, disabling and ultimately terminal.

Most people diagnosed with dementia live in the community and will use a range of different services over a long period of time. Service coordination is the process by which agencies work together in a seamless and coordinated way with the consumer at the centre of service delivery. Effective service coordination is critical to the provision of effective care and support for these people and for their carers.

When should this Protocol be used? It is important to note that this Protocol details the practices and processes currently being undertaken by many services. However it formalises these practices and details expected processes by all services involved in providing care to the person with dementia and their carer in the following circumstances. All boxes need to be checked.

The consumer:

Is eligible for HACC services Is not receiving a formally funded case management service Receives or requires support from 3 or more services Has been diagnosed with dementia; or in the absence of a formal diagnosis, has an impairment of

cognition, social and occupational functioning and performance of activities of daily living Is currently approaching or experiencing a transition in care arrangements (as defined below)

AND

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The practitioner: Considers that a case conference would benefit the person with dementia and/or their carer

Transition Transition, in the context of dementia care, has been described as:

Critical intervention points in service delivery such as transition from hospital back to home or to residential care, transition from home to respite or residential care (Pathways to the Future, p 35)

For the purposes of this Protocol transition may include, but not be restricted to, the following circumstances:

• The commencement of in-home support services • The person with dementia is commencing respite care • The person with dementia, or carer is entering or discharging from hospital care • The person with dementia is moving to residential care • An increased number of referrals for additional supports has been triggered • The person with dementia, or their carer is experiencing a deterioration in health or well being • The person with dementia, or their carer is reporting or exhibiting high levels of stress

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The Protocol in Operation 

Definitions 

Agency: Community service organisation, service provider, non government organisation, local government, primary care agency, member agencies of PCPs.

Carer: provides unpaid help and support to a family member or friend who has dementia. Help and support may include emotional support and encouragement, assistance with self care, mobility and communication as well as assistance with household and financial matters. They may, or may not live with the person with dementia and may, or may not identify with the term carer.

Case Conferencing: The bringing together in one place and at one time, workers and the person with dementia and carer who, in an ordered way, exchange information, explore problems, discuss methods for addressing needs, decide on goals and actions and allocate tasks.

GP Management Plans for Patients with Chronic Disease: 1.GP Management Plan: A written plan of management undertaken by a GP for a patient with a chronic disease. 2. Team Care Arrangements: A management plan developed by a team of relevant health care providers or allied health workers on the recommendation of a patient’s GP. Both GP Management Plans and Team Care Arrangements are a part of the 2005 Enhanced Primary Care package and have CDM Medicare Items.

Practitioner: Health professional, Nurse, Allied Health Professional, Case Manager, Carer Support Coordinator, Counsellor, Welfare Worker, Community Care Worker, and Service Provider etc.

Service/Care Coordination: is a multi-agency and multi-disciplinary process that aims to avoid unnecessary duplication of services and facilitate navigation of the service system. Service/Care Coordination involves the collaborative development, monitoring and review of a Service Coordination Plan between agencies to ensure common achievable goals and actions. Service/Care coordination is facilitated by a nominated practitioner.

Service Coordination Plan (SCP): This provides a framework for an ordered, consistent and coordinated approach to panning and delivery of care and support across different agencies and sectors. The SCP is intended to build on, not replace, individual agency/service care plans/treatment plans/management plans.

Transition: In the context of dementia care, transition describes critical intervention points in service delivery whereby a person with dementia is transitioning to a changed level of care provision.

The Interagency Care Planning Process1

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Identify need

Obtain consent of person with dementia/carer

Document and distribute the Service

Coordination Plan

Monitor and review

Develop the Service Coordination Plan at the case conference

1 Interagency Care Planning Protocol, Final Draft, Interagency Care Planning Protocol Pilot Project Report, North & West Primary Care Partnership Alliance, November 2005

  Process Diagram for Interagency Dementia Care Planning Protocol  Identify Need

Consider: Using a priority of access tool if needed Carer’s Profile Using CALD Best Practice Guidelines for

IC & INS if appropriate Is a GP Management Plan or Team Care

Arrangement in place?

Obtain consent

Consider: Is the person with dementia able to

provide consent? The time needed to run an effective case

conference

Develop the Service Coordination Plan

Consider: Is a referral for case management

appropriate? Is referral to an ethno –specific

appropriate? Is an interpreter needed? If respite care or a hospital admission is

needed is accurate and up-to-date information about the person with dementia available?

Document and distribute the Service Coordination Plan

Consider: Is a translated copy of the SCP needed?

Monitor and review

Consider: Who? What? When?

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       Interagency Dementia Care Planning Protocol Practitioner Checklist 

Identify need

The consumer:

Is eligible for HACC services

Is not receiving a formally funded case management service

Receives or requires support from 3 or more services

Has been diagnosed with dementia; or in the absence of a formal diagnosis, has an impairment of cognition, social and occupational functioning and performance of activities of daily living

Is currently approaching or experiencing a transition in care arrangements (as defined below)

The practitioner:

Considers that a case conference would benefit the person with dementia and/or their carer

Transition For the purposes of this Protocol transition may include, but not be restricted to, the following circumstances:

• The commencement of in-home support services • The person with dementia is commencing respite care • The person with dementia, or carer is entering or discharging from hospital care • The person with dementia is moving to residential care • An increased number of referrals for additional supports has been triggered • The person with dementia, or their carer is experiencing a deterioration in health or well being • The person with dementia, or their carer is reporting or exhibiting high levels of stress

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Obtain consent of person with dementia/carer

Discuss with the person with dementia/carer the purpose of the Interagency Dementia Care Planning Process and obtain agreement to continue

Identify services (Person with dementia/carer to complete the standard SCTTs Consent Form (if not previously completed) to enable the sharing of information

Check whether a Team Care Arrangement or a GP Management Plan is in place. If in place, request a copy. If not, refer to GP (with consent)

Develop the SCP at the case conference

Communicate the identified need for an Interagency Dementia Care Planning process to develop a SCP to all relevant service providers via phone or secure fax/e-referral

Convene the case conference

At the case conference:

Appoint a practitioner to lead the SCP

Clarify roles, responsibilities, key contacts

Identifies priority goals and actions to be included in the SCP

Decide on processes for monitoring and review, taking into account the nature and impact of the transition on both the consumer and carer.

Review whether a referral for case management should be initiated

Identification and documentation of any service gaps

Document and distribute the SCP

SCP completed

SCP distributed to all relevant parties

Monitor and review

Responsibility for monitoring and review of the SCP is clear

For detailed guidelines for case conferences:

Victorian Service Coordination Practice Manual, Primary Care Partnerships, Victoria, 2007

Good Practice Guide for Practitioners, Primary Care Partnerships, Victoria, 2007

Interagency Care Planning Protocol, Final Draft, Interagency Care Planning Protocol Pilot Planning Project Report, North & West Cross Alliance PCPs: Service Coordination Protocol, 2005

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Appendix 1: Consumer Outcomes and Good Practice Indicators – Care Planning2Consumer Outcomes Good Practice Indicators

The practitioner explains to the consumer (and carer if appropriate) the value of a service specific care plan, an intra-agency care plan and a Service Coordination Plan. This may involve the use of interpreters, translated material and culturally sensitive practice.

The practitioner checks to see whether a Team Care Arrangement or a GP Management Plan is in place for a consumer with a chronic disease and/or complex or multiple needs.

The practitioner ensures that the consumer and their carer are empowered to actively participate in all care planning processes.

The practitioner initiates (with consent) the development of a Service Coordination Plan for consumers with complex needs and inter-agency involvement.

The practitioner liaises with other relevant agencies and the consumer’s GP to develop, monitor and review the Service coordination Plan.

The practitioner informs the consumer (and his/her family/carer of the roles and responsibilities of all stakeholders including the key worker.

The practitioner documents needs, goals and actions for consumers with complex or multiple needs and inter-agency involvement in a Service Coordination Plan. A copy of the Service Coordination Plan which includes a review date is provided to the consumer and other relevant stakeholders such as the consumer’s GP.

The agency is involved in an agreed process to nominate a key worker for consumers who have a Service Coordination Plan.

The agency ensures that the key worker role is allocated and performed.

The agency has in place a process for monitoring and reviewing consumer needs and updating care plans when a consumer’s/carer’s needs change.

The agency has in place a process for exit or discharge and re-entry if required.

Consumers are informed about:

• the value of care planning, a Service Coordination Plan and care coordination,

• care planning processes,

• roles and responsibilities of the practitioners including the practitioner who will be fulfilling the key worker role,

• privacy, confidentiality and consent procedures and their right in relation these procedures.

Consumers (and when relevant, family members and carers) are empowered to participate in the development, implementation, monitoring and review of their service specific care plan, intra-agency care plan or Service Coordination Plan.

Consumers have direct access to care planning and care management processes.

The agency has in place a process for consumers who require “urgent services” and who cannot wait for a formal assessment or care planning processes to be completed.

 

2 Victorian Service Coordination Practice Manual, Primary Care Partnerships Victoria, 2007, p,24

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Appendix 2: Dementia and Transition 

Transition periods can provide challenges for people with dementia, their families and carers and for service providers. It is important to recognise what underlie many transition periods and this recognition may be helpful with forward planning.

1. The progression of the dementia

People with dementia differ in the patterns of problems they have, and the speed with which their abilities deteriorate. Their abilities may change from day to day, or even within the same day. What is certain though is that their abilities will deteriorate.

Some of the features of dementia are commonly classified into 3 stages or phases – Early, Middle and Late Stages or Mild, Moderate and Severe. Although these features will not necessarily be present in every person, nor will everyone go through the same stage it remains a useful description of the general progression of dementia.

Early dementia

Often this phase is only apparent in hindsight. The onset of dementia is usually very gradual, and it is often impossible to identify the exact time it began. The person with dementia may have difficulty with:

• Finding the right word • With time and appointments, becoming confused • Losing things • With understanding logic • Socialising: this involves a loss of interest In the wider world

Moderate dementia

At this stage the problems are more apparent and disabling. It is at this stage that services may be providing significant supports to the person with dementia and their carer.

• Becoming repetitive in conversation • Loses the thread of newspaper articles, TV programs, conversations • Confuses time and place • Neglects hygiene • Has difficulty with everyday tasks

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Advanced dementia

At the third and final stage the person is severely disabled and needs total care. Immobility will become permanent and in the final weeks or months the person will be bedridden.

• Incontinent • Immobile or has difficulty with mobility • Confused as to who is who, and may not recognise family • Less communicative – having difficulty understanding or using speech • Confused – looking for people and place from the past

2. Changed behaviours

Changes in the behaviour of a person with dementia are very common. This can place enormous stress on carers. There may be many reasons why a person’s behaviour is changing. Dementia is a result of changes taking place in the brain and affects the person’s memory, mood and behaviour. Sometimes the behaviour may be related to these changes taking place in the brain. In other instances, there may be changes occurring in the person’s environment that trigger the behaviour. Changed behaviours (sometimes called challenging behaviours) that may underlie transition points may include:

• Aggression • Catastrophic reactions • Hoarding • Repetitive behaviour • Hallucinations and false ideas such as paranoia and delusions • Depression

3. The health and well being of the carer

Over time a person with dementia will require increasing support and care from family and friends. Often partners and children provide significant amounts of care on a daily basis as the dementia progresses. Caring for someone with dementia can be difficult, exhausting, lonely and at times overwhelming. Studies confirm high rates of depression, anxiety and even physical illness in families where someone has dementia.

The daily tasks of caring for someone with dementia generally increase as the consumer’s abilities deteriorate. Many carers undertake the role of service coordination themselves adding to their burden of care.

    

Appendix 3: Useful Principles  Individuality: Early in the illness dementia is not spread evenly over the brain and people’s reaction is highly individual. As dementia progresses people begin to show more typical signs. Having other conditions such as low vision or hearing impairment can make the reaction to dementia less predictable also.

Unlearning: Most dementia can be characterised as a process of Unlearning. What was most recently learnt will be lost first and what was learnt in early years will remain the longest. New learning becomes increasingly difficult and then just about impossible.

Reduced capacity: Another effect of dementia is that typically the person with dementia can only handle one item of information at a time. It also means that they tend to overload very quickly if there are a lot of demands on their attention. Making choices becomes more difficult for them and answering questions becomes harder, particularly those questions which require some thinking.

Security: As the person with dementia experiences the world around them as being less and less reliable, a key issue becomes their own security. When you take a person with dementia out of their comfort zone, they are likely to be agitated. All change in their life involves new learning so they tend to cling to old learning –places, people, belongings, habits and routines from the past.

Dementia changes: The general pattern of changes with dementia is one of increasing frequency. Initially, there will be an incident where the person with dementia shows some behaviour which is quite out of character. Because this usually presents as an isolated incident, it may be overlooked. Then similar incidents will begin to happen with increasing frequency until the behaviour is happening all the time. If all changes are noted, then the first incident can serve as an indication of what is to come. Language: There are many language changes in dementia –forgetting names, shrinking vocabulary, reliance on clichés, losing the thread of conversations and generally problems with understanding words. Along with this unlearning of language skills there is an increased reliance on non-verbal language such as tone of voice, gestures, facial expression and touch. This means that when people with dementia are talking to other people such as family members they may be reacting to cues which are not directly part of the conversation. Turning inwards: As dementia progresses the world of interest for people with dementia begins to shrink; they turn more and more inwards, i.e. talk to themselves, remember past conversations, and remember past images. The look which is sometimes described as having ‘hollow eyes’ is actually the defocusing of the eyes when the person is visualising. When this is happening the person may appear outwardly to be inactive but in their mind they are actively rambling through sounds, images and feelings from their past. ‘Hallucinations’ occur when they can no longer tell the difference between internal and external images. Not a Child: Although the process of dementia causes the person to unlearn what they have learnt as an adult, they do not turn into a child. Their childlike levels of abilities are not uniform and are mixed with remaining abilities which may just need a reminder to be activated. Also their identity remains as an adult for a long time.

Alzheimer’s Australia www.alzheimers.org.au

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Appendix 4: Dementia Specific Issues: Considerations for Coordinated Care Planning 

Working with carers of people with dementia

 Dementia is a progressive illness and caring for a person with dementia becomes more difficult over time. Typically the care giving role is increasingly stressful and the physical and mental health of the carer may decline.

Because the dementia changes usually take place over years, the carer often finds change as difficult as the person with dementia. The behaviour of the person with dementia influences the carer and vice versa. Therefore, effective dementia care planning must deal not only with the person who has dementia but also with carers. Consultation with carers will promote the consensus needed to implement care plans. Aim to incorporate carers as full partners in care. Transitions provide little or no closure for carers and often exacerbate their emotions such as guilt, sadness and anger at the service system. The distress may relate to factors such as the built-up stress of caring, the lack of practical or moral support, the carers prior level of depression, the ambiguity in relating to a changed personality and anxiety over a future without the person. Various interventions can be used to reduce the sense of helplessness and assist carers to adjust to the new care situation. Carers need support for emotional distress

WMR Service Coordination Best Practice & Continuous Improvement Manual

Part Five: Improving Practices with Specific Target Groups; Section 1: Carers – WMR Carer Profile, Western Metropolitan Region Primary Care Partnerships, 2002

Alzheimer’s Australia www.alzheimers.org.au

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Carers Victoria www.carersvic.org.au

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Dementia and CALD Communities

As the number of older people in ethnic communities is increasing, so is the issue of dementia amongst this group. A recent report estimates that currently one in eight Australians with dementia does not speak English at home.3 Supporting people with dementia and their families at the time of transition between care arrangements has an added dimension when working with people from cultural and linguistically diverse backgrounds.

Some of the key principles that apply to a dementia context include the following:

• The perception of the term ‘dementia’ varies significantly between communities. The term does not exist in some languages; dementia may be considered a mental illness rather than an organic disease process; and there may be in some instances a reluctance to acknowledge, discuss, engage with or consider dementia-specific support options.

• Carers’ responses to changed behaviours may vary between communities and families. But note

that not all people of the same cultural background necessarily hold the same beliefs or opinions.

• Responses to the care needs and care options of a person with dementia also vary significantly. It is important to consider the family’s background and experiences in determining what services are appropriate.

• A number of studies have shown that the last language acquired is the first to be lost in people

with dementia. Older people who migrated to Australia from countries of a non English speaking background may revert to their native language as a dementia develops. That language may not necessarily be familiar to all family members or carers, and there is a need to identify support people who speak the language to assist during this time.

• People from CALD communities are likely to be diagnosed with dementia later and often at crisis

point due to the stigma associated with dementia, lack of knowledge of the service system and lack of culturally appropriate tools.

• Good knowledge and understanding of the person’s past plays a crucial role in dementia care as many people from migrant backgrounds have had traumatic past experiences (such as war) that can impact on family relationships and service provision.

• Understanding the responsibility of care in culturally diverse communities is important. With

some traditional communities there is an expectation that the family will take on the role of carers. However this is not always possible due to competing pressures of the carers’ own family and work commitments. Feelings of guilt and resentment may need to be addressed when deciding on the appropriate services.

3 Dementia prevalence and incidence among Australians who do not speak English at home, Access Economics for Alzheimer’s Australia, 2006

WMR Service Coordination Best Practice & Continuous Improvement Manual

Part Five: Improving Practices with Specific Target Groups; Section 2: CALD – Best Practice Guidelines for IC & INI, Western Metropolitan Region Primary Care Partnerships, 2002

Alzheimer’s Australia www.alzheimers.org.au

Transitioning To and From Hospital

Service coordination should take particular account of the home-to-hospital interface. Patients with dementia tend to have:

• Longer stays in hospital • More complications • Increased incidence of delirium • Likelihood of discharge to higher care

Hospitals need to have accurate and up to date information about the person with dementia This should incorporate key information that is unique about the patient including preferred name, sleeping habits, daily routines, behaviours and issues requiring particular care practices Carers should be as involved as possible in the transition from home to hospital by:

• Listening and recording the carer’s advice • Involving the carer in the admission process: (support the carer to stay with the person with

dementia until settled and to discuss care preferences with nursing staff) • Keeping carers informed: especially regarding understanding medication

Discharge planning should commence earlier than normal due to the care complexity. Carers also need to be involved in discharge planning:

• Provide carers with sound information at the time of discharge: medication regimes, discharge summary, links to post hospital services

• Ensure that discharge planning is responsive to the particular care issues for people with dementia.

 

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Useful Resources  Alzheimer’s Australia website www.alzheimers.org.au contains:

• Help Sheets on many topics for reading or downloading • Suggested reading and video lists • Papers and Reports of Interest • Upcoming events

National Dementia Helpline: Call toll free 1800 100 500 for Dementia Information and Referral Carers Victoria website www.carersvic.org.au

Surviving the Maze: Information Sheets for carers and families of older people can be downloaded.

Phone: 9396 9500

Carers Counselling Program: 1800 242 636

Carelink: 1800 052 222

General Practice Divisions Victoria: www.gpdv.com.au

Centre for Cultural Ethnicity and Health: www.ceh.org.au

Muticultural News: the biannual newsletter produced by Alzheimer’s Australia Vic aiming to inform service providers about a range of initiatives and programs for people living with dementia, their families and carers from culturally and linguistically diverse backgrounds.

Quality Dementia Care, Alzheimer’s Australia, 2003

Dementia Terminology Framework. Alzheimer’s Australia, 2004

Victorian Service Coordination Practice Manual, Primary Care Partnerships, Victoria, 2007, www.health.vic.gov.au/pcps/publications

Good Practice Guide for Practitioners, Primary Care Partnerships, Victoria, 2007, www.health.vic.gov.au/pcps/publications/goodpractice.htm