Title: Strategies for Developing New Dementia Advocates in Families Affected by Genetic FTD

Abstract: Patient voices are critical inputs for dementia research and therapy development. While many patient-contacting institutions take steps to solicit and act on patient feedback, the perspectives of affected individuals and families remain underrepresented in institutional discourse about dementia.

Individuals from families affected by familial FTD face serious barriers to sharing their personal stories and participating in public advocacy. Stigma around an individual's current and future neurological health prevents many from speaking about their experience with familial disease. The demands of caretaking for a family member with dementia can consume time, money and energy that these individuals would otherwise use to pursue avenues of public advocacy.

There are strategies that are effective in developing new dementia advocates within these families. Role models who share their dementia experiences publicly can give new advocates a template for how to tell their own story. Connecting personally with others with shared experiences of caregiving and genetic testing can allow individuals to practice the vulnerable act of sharing in a trusting environment. Identifying impactful and achievable goals can turn dispersed populations of FTD families into organized communities with a shared, actionable purpose.