Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Feb;42(2):290-301.
doi: 10.1177/07334648221128558. Epub 2022 Oct 4.

Longitudinal Predictors of Informant-Rated Involvement of People with Dementia in Everyday Decision-Making: Findings from the IDEAL Program

Serena Sabatini  1 , Anthony Martyr  2 , Laura D Gamble  3 , Rachel Collins  2 , Fiona E Matthews  3 , Robin G Morris  4 , Jennifer M Rusted  5 , Claire Pentecost  2 , Catherine Quinn  6   7 , Linda Clare  2 ; behalf of the IDEAL study team
Affiliations

Longitudinal Predictors of Informant-Rated Involvement of People with Dementia in Everyday Decision-Making: Findings from the IDEAL Program

Serena Sabatini et al. J Appl Gerontol. 2023 Feb.

Abstract

The extent to which people with dementia are involved in everyday decision-making is unclear. We explored informant-rated involvement of people with dementia in everyday decision-making over 2 years and whether functional, behavioral, and psychological factors related to the person with dementia and the caregiver explain variability in involvement of people with dementia in everyday decision-making. We used IDEAL data for 1182 people with dementia and their caregivers. Baseline mean score on the decision-making involvement scale was 31/45; it minimally declined over time. People with dementia who were female, single, and/or whose caregiver was younger had greater involvement in everyday decision-making than those without these characteristics. Better cognition, fewer functional difficulties, fewer neuropsychiatric symptoms, less caregiver stress, and better informant-rated relationship quality were associated with higher involvement in everyday decision-making. Cognitive and functional rehabilitation, and educational resources for caregivers, could prolong involvement of people with dementia in everyday decision-making.

Keywords: Alzheimer’s disease; caregiver stress; caregiving; cognitive capacity; functional ability; neuropsychiatric symptoms; relationship quality.

PubMed Disclaimer

Conflict of interest statement

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Adler G. (2010). Driving decision-making in older adults with dementia. Dementia, 9(1), 45–60. 10.1177/1471301209350289 - DOI
    1. Alzheimer Europe . (2020). Legal capacity and decision making: The ethical implications of lack of legal capacity on the lives of people with dementia.
    1. American Psychiatric Association . (2013). Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Association.
    1. Bonds K., Song M., Whitlatch C. J., Lyons K. S., Kaye J. A., Lee C. S. (2021). Patterns of dyadic appraisal of decision-making involvement of African American persons living with dementia. The Gerontologist, 61(3), 383–391. 10.1093/geront/gnaa086 - DOI - PMC - PubMed
    1. Caron C. D., Griffith J., Arcand M. (2005). End-of-life decision making in dementia: The perspective of family caregivers. Dementia, 4(1), 113–136. 10.1177/1471301205049193 - DOI

Publication types