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Could evaluation of changes in daily-activity preferences over time, in individuals with dementia improve their quality of life?
James Wilkins, M.D., DPhil
McLean Hospital
Belmont, MA - United States
Background
As dementia progresses, care givers (or care partners) are increasingly involved as decision makers on behalf of these individuals with dementia. Previous work by Dr. James Wilkins has shown a discrepancy between people with significant cognitive impairment and their care partners on the importance of everyday preferences regarding activities such as spending time outdoors, using the computer, etc. The reasons for these discrepancies are not yet clear. Based on these findings, Dr. Wilkins proposes to address this knowledge gap by monitoring changes over time in everyday preferences in people with cognitive impairment and identifying the contributors to the discrepancies.
Research Plan
Dr. Wilkins and his team plan to enroll 70 pairs of people with significant cognitive impairment and their care partners. These individuals will be recruited from a group enrolled in other clinical studies at the Massachusetts Alzheimer’s Disease Research Center. The researchers will then collect demographic, cognitive and behavioral assessment data annually. Individuals with cognitive impairment will fill out a questionnaire that is specialized for older adults called the Preferences for Everyday Living Inventory (PELI) to assess preferences. This tool encompasses multiple areas including social contact, diversionary activities, enlisting others in care, etc. The care partners will also complete PELI from the perspectives of the individuals with cognitive impairment. Dr. Wilkins and colleagues will analyze the data to evaluate the levels of agreement between the individuals with cognitive impairment and their care partners regarding changes in daily activity preferences, Furthermore, the researchers will evaluate how changing cognitive function and associated psychological stress in individuals with cognitive impairment impacts these levels of agreement.
Impact
Dr. Wilkins’ study looks at a broad range of decision-making activities by caregivers, multiple times with approximately 12 months between each assessment. If successful, these results could enable researchers to design interventions that would support decisions by caregivers that enable reduction of psychological stress and anxiety in individuals with dementia.
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