1. What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca Karen Kobayashi, PhD Associate Professor, Department of Sociology Research Affiliate, Centre on Aging kmkobay@uvic.ca André Smith, PhD Assistant Professor, Department of Sociology Research Affiliate< Centre on Aging apsmith@uvic.ca Presented at the 26 th International Conference of Alzheimer’s Disease International, Toronto, March 27, 2011. The study is part of ADTI, funded by the BC Ministry of Health Services.

2. Caregiver Appraisal Study (CAS) PI: Neena L. Chappell, PhD, FRSC, CRC Co-Is: Karen Kobayashi, PhD; André Smith, PhD, Dept of Sociology, University of Victoria; Malcolm Maclure, SCD, B.C. Chair in Patient Safety, Dept of Anaesthesiology, Pharmacology & Therapeutics, UBC & Co-Director of Research, PSD, Ministry of Health Services, B.C.

3. Key Research Objectives Understand CG assessments of the effectiveness of ChEIs for patients and for CGs Compare CG subjective assessments with scaled measures (e.g., Zarit Burden, Rosenberg Scale of Self- Esteem, Pearlin Expressive Support) Compare CG assessments of effectiveness with clinical assessments by physicians Identify predictors of intention to institutionalize. Understand why these meds become terminated

4. Recruitment by Group CG to naive patients – benefit (T1 280; T2 261) CG to naive patients – indeterminate (T1 222; T2 212) CG to naive patients – negative (T1 21; T2 17) CG to non-naive patients (T1 251; T2 222) CG to those off meds (T1 44: T2 43)

5. Recruitment Sources Pharmacare Calls 1309 (59.8%) Physician Referrals 524 (23.9%) MOHS letters 146 (6.7%) Self Referral 204 (9.3%) Pharmacist/participant 4 (.2%) Total 2189

6. Data Collection Caregiver survey Semi-structured face-to-face interview (duration-1.5 hour) T1 = 6 months T2 (or exit interview at termination) = 18 months Triage interview at 6 months Narrative-based interviews with selected sub-sample

7. Multivariate Analyses No effect on CG outcomes, i.e., burden, self-esteem, anxiety No effect on hope/help scales Negative perception of meds on CG’s own mental health is related to increased CG burden and anxiety Perception of assistance required has increased since Patient on meds is related to increased CG burden Positive perception of relationship with Patient since on meds is related to increased CG burden and anxiety

8. Narrative-based interviews In-depth exploration of caregiver appraisal/experiences in the context of the caregiving relationship 25 caregivers 20 individual interviews (average = 1.2 hours) 2 focus groups (N=2; N=3) (average = 2.5 hours) Patient diagnosis: AD (N=17); vascular dementia (N=3); Lewy body dementia (N=1); dementia (N=4) Persistence: 1 - 7 years (average of 3.2 years) Smith, A. Kobayashi, K. Chappell, N. & Hoxsey, D. (forthcoming). “The controversial promises of cholinesterase inhibitors for Alzheimer’s disease and related dementias: A qualitative study of caregivers’ experiences.” Journal of Aging Studies.

9. Hope and ambivalence Caregivers expected ChEIs to slow the decline of ADRD and improve memory Only 5 caregivers felt the meds had improved the CR condition; others were ambivalent “Oh, it’s working. I guess.” (Ian, husband) “I cannot judge what effects it has had as I do not know how she would have acted or behaved without it. How can I say?” (Peter, husband).

10. Possible interactions between ChEIs and caregiving context “I think he’s gained more confidence. Part of that is the medication and part of that is ‘OK, I have Alzheimer’s, I’m on medication, how can I go ahead and do something.’” (Helen, wife) “I think she improved. But it probably had to do partly with the fact that I was there more and that she had more interesting company. She wasn’t alone as much.” (Eric, husband) “I feel that there’s something that can help me. That makes a difference and it also gives you hope. I have something to lean on in the medication.” (Chloe, daughter)

11. Long-term persistence and discontinuation “If I were to have my way, I would probably have stopped the Aricept, but uh, a little doubt in my brain said, ‘No, it may be doing something. It may be doing something but I cannot notice.’” (Chantal, mother on ChEIs for 7 years) “So as a family, we’ve talked about it. Her decline over the last six months has been quite striking. If we stop the Aricept, it’s not going to kill her, but...with no brain, unable to function, not know anybody? Do we want to prolong this? So that was the deciding thing. And the answer is no we don’t want her on the meds anymore.” (Sheila, mother on ChEIs for 6 years)

12. Conclusions Positive perception of meds, yet no significant effect, either positive or negative on caregiver outcomes Qualitative data – little or no perceptible positive effect in patients yet CG unwilling to terminate (“just in case”, fear of sudden decline once meds are stopped) Reasons for long-term persistence and discontinuation warrant further investigation Important that we do not interpret caregivers’ positive perceptions as necessarily indicating a benefit for the patient

13. Policy conundrum Policymakers have a number of different audiences Caregivers have been an important political force, pressuring the government to cover these meds. Yet, the data to date do not provide strong evidence for such coverage.