Dementia Care Research and Psychosocial Factors

Area of Science:

• Neuroscience
• Genetics
• Public Health

Background:

• Community networking (CN) meetings build trust between researchers and participants in studies.
• Families at risk of autosomal dominant Alzheimer's disease (ADAD) in Jalisco, Mexico, participate in regular CN meetings.
• Previous meetings prompted an exploration of family needs to inform future research directions.

Purpose of the Study:

• To explore the expressed needs of families at risk of APP_V717I and PSEN1_A431E autosomal dominant Alzheimer's disease (ADAD).
• To guide the research group's future work based on family-identified needs.

Main Methods:

• Ninety-one family members attended three CN meetings in 2024.
• Anonymous written responses were collected using two open-ended questions: "What recommendations would you make for future meetings?" and "What are your Alzheimer's-related needs?"
• Responses were coded and analyzed for frequency to generate consensual categories.

Main Results:

• Seventy-seven responses were analyzed, categorized into Research group efforts (n=47), Health Information (n=39), Caregiving (n=26), and Psychosocial Support (n=11).
• Research group efforts, including enrollment and workshops, were the most frequently mentioned need.
• Specific needs varied by site, including genetic counseling and care supplies.

Conclusions:

• Family needs encompass research engagement, health information, caregiving, and psychosocial support.
• Site-specific concerns highlight the influence of context and lifestyle on ADAD family needs.
• Future research and support strategies will be tailored to address these identified family needs.