Preliminary findings of the

Trandisciplinary Primary Care for Caregivers of Individuals with Alzheimer Disease Study

Alzheimer Society of Canada

Canadian Nurses Foundation

Principal Investigator: Dr. Deborah Kiceniuk (Dalhousie/MSVU)

Co-Investigators: Dr. Nandini Natarajan (Dalhousie, CDHA),

Dr. Lynne Robinson (Dalhousie), Ms. Joni Hockert (CDHA) Research Coordinator: Ms. Shannon

McEvenue (MSVU) Research Student Trainee: Ms. Kathryn

Francis (Dalhousie)

Providing care to individuals with AD is a costly and urgent health care issue

Providing care comes with significant and complex challenges for caregivers

Caregivers require appropriate care and support to continue in their essential roles

How are primary health professionals providing care and support to caregivers of individuals with AD and dementia?

What are the barriers to providing this support?

What would a model of primary health care for caregivers of individuals with AD/dementia look like?

In depth one-on-one interviews with family caregivers, health care providers, community organizations, and government representatives

Care providers included physicians, nurses, social workers, pharmacists, occupational therapists, psychologists, and day program coordinators

Caregivers 9

Physicians 10

Nurses 10

Pharmacists 4

Other Providers 10

Community Organizations 4

Government

Representatives 3

This presentation will focus on data collected from the caregivers interviewed

Focusing on their experiences

Seven female, two males

Living arrangements - varied

Relationship to care receiver - five CG caring for a parent, four CG spouses

Seven with professional experience in the health care system

Caregiver stress and sacrifice was evident

Caregivers discussed a wide range of daily challenges

Self-recognition of needs and boundaries varied

Caregiving role included advocacy and self-care

Caregivers discussed service utilization with respect to their care receivers

Participants had some difficulty verbalizing health care and support as it related to their caregiving role

Family Physician

Own health care needs:

“we have a walk-in clinic”

“And sometimes the doctor herself calls”

Some had not seen a physician for nearly 2 years

Specialists

Available to most caregivers

Access was limited

Wait times – 2-3 months

Some did not see the need or value:

“I don’t think we would have done anything differently if we had a piece of paper saying AD”

Support:

“it is not in their protocol to be supportive”

“we need leadership out there”

Pharmacist Services

Most CG accessed pharmacist’s advice:

“tell me what [drug] is all about?”

“was the one who helped me …figure out how to access pharmacare”

Respite Care- Few CG used this service - CG are very appreciated of the break - Variety of sources from private to public

home care or family members- 0-10+ hours of respite- Issue of appropriate care/scheduling

“it must be difficult if that’s your only choice to see your spouse in that kind of

setting”

Home Care

Most of the CG’s were not accessing public home

care services for a variety of reasons

- Not at the stage where they qualified

- Had assistant employed

- Expressed need for social interaction for CR

“17 folk in and out over two-week period…Like we really had ourselves set up for defeat”

Long-Term Care

- 2/3’s of the CG lived with their CR

- Those CG whose CR was in LTC - still spent a significant time with the CR after placement

- The need to plan for long term care or end up in transition waiting

- Significant wait lists

“they are absolutely wonderful over there, the nurses”

Day Programs

- Few CG used this for respite and social interaction for the

CR

- Reason for not using it:

Lack of availability

Inappropriateness of level of care

Inflexible hours

CR resistance

“they offer crafts. Well, he wouldn’t do crafts”

Support Groups

- Some were active participants

- Found them through word-of-mouth

- Used it for:

- social support as opposed to emotional support

- information gathering/problem-solving

- Others found it emotionally draining

- EAP

“I do on-line counseling, ‘cause I know every counselor in town”

Alzheimer Society Services, Support, and Referrals

- Alzheimer Society and Caregivers NS are underutilized resources

Emotional/Psychological Care- This care was lacking for the CG in this study

- Received it from family and friends, if at all

“I haven’t got an hour to sit with this person. And being a ‘doer’ I always opted to getting the ‘to do’ list shortened rather than taking care of my emotional self.”

Physician Time and AvailabilityAll had access to FP

- focus on health-related needs not CG needs

- other health professionals to take on support roles (dementia education and referral services)

- except for one CG no one was asked…

“How are you coping?”

Availability of Appropriate Services

very task-oriented such as meal preparation or personal care

only available during the day and CG would like to go out for an evening

depended on the stage of the illness not on need of CG (respite bed at early stages)

location - rural/small town/dual role

After 3 intake workers

Intake Worker: “We could come in and tie his shoe laces”

CG replies: “I want someone who would just chat to him...so he can laugh and reminisce

..he may not even understand what he is talking about but just listen”

Fragmentation of Services

tracking down services and explaining needs

“Care Plan Puzzle”

“all these pieces scattered on a board and nothings connected”

Care Provider Skills and Training

◦ Level of skills, knowledge, and training in dementia care were lacking

◦ Less than optimal care experience

“Good enough assessment to see the big picture”And “I am not sure that our care providers are trained in a broad enough way to do that”

“they would set Mom up with a jigsaw puzzle…500 piece puzzle…and then wonder why …she would get frustrated”

Appropriate Language: The Next Adventure:

“When we came back [to the doctor] after the diagnosis”

FP: “you’re going to …you’ll need babysitters”

CG: “jeez..that’s funny, why would we need babysitters? No baby in our house.”

FP: “I guess you’re telling me off”

“He was a great support”

Appropriate Dress:

CG: “we had one [care provider] that wore low-cut tank tops and short shorts

“bottom-line is that person is in a bathroom situation with a male who could think that it was his wife 30 years ago”

“and then you have drama”

CG spend a lot of time to find information about AD, and services for them and their CR

- single repository but with a referral service

- assist in planning for the progression of the disease

“sometimes you don’t know what you don’t know”

Transportation/ Location

Most of the CG - not a problem

- It would be a significant problem for others

- More so in rural areas

- Time off work

- 4 hour drive to get parent

Wait-times for services◦ Some did not perceive wait times as long but others

“my mother’s dementia was getting worse…

something’s going to break here,

my health or my sanity”

Personal Finances

- some public services had a cost associated with them

- If CR’s condition was not advanced had to wait for services or pay

“ a lot of families cannot afford to have nursing care around the clock…

“so they [CR] end up in hospitals”

“Yeah, I find it a little expensive”

“You know it would be nice have a tax break”

1. Care Planning – CG want a plan similar to those strategies for cancer and diabetes

2. Improved Links Between FP and Appropriate Resources

FP give referrals for ID geriatric care but are not always part of that care

FP need access to hospital charts

Improved links between FP and available resources (AS and Caregivers Groups)

Recommendations

3. Make Home Care Less Task-Oriented

CG’s in this study felt that the CR could use social stimulation

4. Training for Health Care Providers at all Levels regarding Dementia Care and CG’s Needs

Recommendations

Collaborative Caregiver –Related

Services in NS

Adult Day Clinic – Eastern Shore Memorial Hospital

schedule visits for OT, PT, FP, SW, Pharmacy, nursing, blood work (Daily Fee $15.00 includes lunch and trans.)

www.Caregivers.org/adult_day_programs.php

Centre for Health Care for the Elderly – QEII

Geriatric Day Hospital, Geriatric Ambulatory Care, and Falls Clinic

Models of Primary Care

Seniors Mental Health – community outreach at Abbey Lane and NSH

Interdisciplinary Team – psychiatry, geriatrics, FM, nursing, SW, OT, PT, and recreation therapy

Home Visits

Serves HRM and Halifax County

Geriatric Consultation Service- Sutherland Harris Memorial Hospital , Pictou

Community-based

Assessment and follow-up to CR and CG

By physician referral only

Collaborative Caregiver –Related Services in NS

Seniors Mental Health – Annapolis Valley

Nursing and Psychiatric Assessment with some follow-up

FP are encourage to participate

Senior mental health nurse provides CG support and education as well as referrals to resources

Seniors Health Team – South Shore

In-home assessments and follow-up

Nurse, pharmacist, OT, PT, and SW

Cape Breton Geriatric Medicine

Geriatrician, nurse, and SW

In-home assessments and some follow-up

Collaborative Caregiver –Related Services in NS

Stay Tuned! …..

as we will be back with the next set of results from the health provider groups

Goodbye for now!