Persons with dementia and informal caregivers prioritizing care: A mixed-methods study

Area of Science:

• Gerontology
• Dementia Care Research
• Health Services Research

Background:

• Increasing numbers of individuals with dementia are living in community settings.
• A shift from residential to home and community care models is occurring globally.
• The perceived value of available care and support services by persons with dementia and their informal caregivers remains underexplored.

Purpose of the Study:

• To prioritize essential care characteristics for community-dwelling persons with dementia.
• To identify and rank the care preferences of informal caregivers supporting individuals with dementia.
• To utilize a novel mixed-methods approach to understand and value diverse care needs.

Main Methods:

• Conducted six mixed focus groups in The Netherlands.
• Included 23 persons with dementia and 20 informal caregivers.
• Employed a quantitative ranking exercise followed by thematic analysis of group discussions.

Main Results:

• Persons with dementia prioritized in-home care, assistance with daily activities, and social engagement.
• Informal caregivers ranked social activities, dementia-related information, healthcare navigation, and emotional support highest.
• Distinct preferences emerged between persons with dementia and their informal caregivers.

Conclusions:

• Persons with dementia emphasized daily living support and activities.
• Informal caregivers focused on care organization and coping strategies.
• The study developed a valuable method for capturing and prioritizing care preferences in dementia.