What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research...
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Transcript of What Caregivers Think of Cholinesterase Inhibitors Neena L. Chappell, PhD, FRSC Canada Research...
What Caregivers Think of Cholinesterase
InhibitorsNeena L. Chappell, PhD, FRSC
Canada Research Chair in Social GerontologyUniversity of Victoria
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.
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.
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
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)
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
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
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
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.
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).
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)
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)
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
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.