Who is Taking Care? Accessing Primary Health Care

and Support for Dementia Caregivers

Preliminary findings of the

Trandisciplinary Primary Care for Caregivers of Individuals with Alzheimer Disease Study

Alzheimer Society of Canada

Canadian Nurses Foundation

Funding Organizations

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)

Research Team

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

Background

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?

Research Questions

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

Data Collection

Caregivers 9 Physicians 10 Nurses 10 Pharmacists 4 Other Providers 10 Community Organizations 4 Government

Representatives 3

Data Collection 50/56 completed interviews

This presentation will focus on data collected from the caregivers

interviewed

Caring for the CaregiverVON Pictou County

May 20, 2009

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

Participating Caregivers (9)

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

The Dementia Caregiving Experience

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

Service Accessibility and Utilization

Family PhysicianOwn 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

Service Utilization

SpecialistsAvailable to most caregivers Access was limitedWait 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”

Service Utilization

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”

Service Utilization

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”

Service Utilization

Home CareMost 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”

Service utilization

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”

Service Utilization

Day Programs- Few CG used this for respite and social interaction for the CR- Reason for not using it:

Lack of availabilityInappropriateness of level of careInflexible hours CR resistance

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

Service utilization

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”

Service utilization

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

Service Utilization

“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.”

Emotional Support and/or Support Services

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?”

Barriers to Care

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

Barriers to Care

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”

Barriers to Appropriate Care

Fragmentation of Servicestracking down services and explaining needs

“Care Plan Puzzle”

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

Barriers to Care

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”

Barriers to Care

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”

Barriers to Care:Care Provider Skills and Training

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”

Care Provider Skills and Training

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”

Information Availability

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

Barriers to Care

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”

Barriers to Care

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”

Barriers to Care

“Yeah, I find it a little expensive”

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

Barriers to Care

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 careFP need access to hospital chartsImproved links between FP and available resources (AS and Caregivers Groups)

Recommendations

3. Make Home Care Less Task-OrientedCG’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 Hospitalschedule 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 – QEIIGeriatric 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

therapyHome VisitsServes HRM and Halifax County

Geriatric Consultation Service- Sutherland Harris Memorial Hospital , Pictou

Community-basedAssessment and follow-up to CR and CGBy physician referral only

Collaborative Caregiver –Related Services in NS

Seniors Mental Health – Annapolis ValleyNursing and Psychiatric Assessment with some follow-upFP are encourage to participateSenior mental health nurse provides CG support and

education as well as referrals to resources

Seniors Health Team – South ShoreIn-home assessments and follow-upNurse, 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!