What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research...

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What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria [email protected] Karen Kobayashi, PhD Associate Professor, Department of Sociology Research Affiliate, Centre on Aging [email protected] André Smith, PhD Assistant Professor, Department of Sociology Research Affiliate< Centre on Aging [email protected] 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.

Transcript of What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research...

Page 1: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

What Caregivers Think of Cholinesterase

InhibitorsNeena L. Chappell, PhD, FRSC

Canada Research Chair in Social GerontologyUniversity of Victoria

[email protected]

Karen Kobayashi, PhDAssociate Professor, Department of Sociology

Research Affiliate, Centre on [email protected]

André Smith, PhDAssistant Professor, Department of Sociology

Research Affiliate< Centre on [email protected]

Presented at the 26th 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.

Page 2: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

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.

Page 3: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

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

Page 4: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

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)

Page 5: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

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

Page 6: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

Data Collection

Caregiver surveySemi-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

Page 7: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

Multivariate AnalysesNo 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

Page 8: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

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.

Page 9: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

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).  

Page 10: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

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)  

Page 11: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

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) 

Page 12: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

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

Page 13: What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research Chair in Social Gerontology University of Victoria nlc@uvic.ca.

Policy conundrumPolicymakers 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.