Journal
GERONTOLOGIST
Volume 51, Issue 4, Pages 473-483Publisher
OXFORD UNIV PRESS INC
DOI: 10.1093/geront/gnr010
Keywords
Caregiving; Decision making; Care preferences
Categories
Funding
- ESRC [ES/F016050/1] Funding Source: UKRI
- NIA NIH HHS [P50 AG08012, P50 AG008012] Funding Source: Medline
- NIMH NIH HHS [R01 MH070629] Funding Source: Medline
- PHS HHS [R01070629] Funding Source: Medline
- Economic and Social Research Council [ES/F016050/1] Funding Source: researchfish
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Purpose of the Study: We explore discrepancies in perceptions of values and care preferences between individuals with dementia (IWDs) and their family caregivers. Design and Methods: We interviewed 266 dyads consisting of an individual with mild to moderate dementia and his or her family caregiver to determine IWDs' beliefs for 5 values related to care (autonomy, burden, control, family, and safety). We used multilevel modeling to investigate if there are dyadic level discrepancies in beliefs and what factors are associated with such discrepancies. Results: Caregivers consistently underestimated the IWD's values for all five values. Discrepancies were associated primarily with caregivers' beliefs about the IWD's involvement in decision making. Race was also associated with the discrepancies for control and safety, whereas cognitive functioning of the IWD was associated with the discrepancy for burden. Implications: Many caregivers do not have an accurate depiction of the IWD's values, yet, caregivers will become the surrogate decision makers for IWDs as dementia progresses. These findings indicate the need for assessments of values and preferences in care and to develop programs that assess values, consider the caregiver's beliefs about care, and improve communication within the dyad in the early stages of dementia.
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