Who is Taking Care? Accessing Primary Health Care and Support for Dementia Caregivers

1. 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

2. Funding Organizations • Alzheimer Society of Canada • Canadian Nurses Foundation

3. Research Team • 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)

5. Background • 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

6. Research Questions • 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?

7. Data Collection • 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

8. Data Collection 50/56 completed interviews • Caregivers 9 • Physicians 10 • Nurses 10 • Pharmacists 4 • Other Providers 10 • Community Organizations 4 • Government Representatives 3

9. Caring for the CaregiverVON Pictou County May 20, 2009 This presentation will focus on data collected from the caregivers interviewed

10. Participating Caregivers (9) 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

11. The Dementia Caregiving Experience • 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

12. Service Accessibility and Utilization • 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

13. Service Utilization • 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

14. Service Utilization • 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”

15. 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”

16. 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”

17. Service utilization • 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”

18. 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”

19. Service utilization • 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”

20. 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”

21. 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

22. Emotional Support and/or Support Services “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.”

23. Barriers to Care • Physician Time and Availability All 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?”

24. 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

25. Barriers to Appropriate 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”

26. Barriers to Care • Fragmentation of Services tracking down services and explaining needs “Care Plan Puzzle” “all these pieces scattered on a board and nothings connected”

27. 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”

28. Barriers to Care:Care Provider Skills and Training 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”

29. 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”

30. Information Availability 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”

31. Barriers to Care • 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

32. 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”

33. 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”

34. Barriers to Care “Yeah, I find it a little expensive” “You know it would be nice have a tax break”

35. Recommendations 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)

36. 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

37. Models of Primary Care 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

38. Collaborative Caregiver –Related Services in NS 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

39. 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

40. Stay Tuned! ….. as we will be back with the next set of results from the health provider groups Goodbye for now!