Our Abstract At ISFTD
You all have been asking to read our abstract so here it is! Below the poster, we added the text directly from the poster to make it easier to read. - R+M
Category: Psychosocial Effects on FTD Families
The abstract should be no more than 250 words in length and should be divided into several paragraphs as shown below:
State of the art
There is a profound psychosocial impact on individuals with a family member diagnosed with Frontotemporal Degeneration (FTD).
Methodology
“Remember Me” Podcast conducted 43 one-hour interviews with family members of persons diagnosed with FTD. Interviews detailed the diagnosis process, caregiving, disease progression, and the dramatic personality and behavioral changes in the person diagnosed.
Interviewed family members geographically represent The United States (20 states), Brazil, Canada and Spain.
Remember Me developed a survey to associate data with key interview findings. 54 podcasts listeners participated and reported the diagnosed individual as their: Parent (35), Spouse (10), Aunt/Uncle (3), Father-in-law/Mother-in-law (2), Sibling (2) or Multiple Family Members (2).
Results
91% of individuals reported going through periods of depression and isolation post diagnosis. 72% reported difficulty performing the duties of their job. 91% reported finding it difficult to relate to others.
48% disagreed with the statement “I left the [diagnosis] visit with an understanding of what the diagnosis meant.” 68% disagreed with the statement “I was given resources for myself and my family”. 89% agreed “I often lived in fear of what was coming next.”
38 individuals reported seeking support from a “counselor, therapist or psychiatrist”.
50 reported developing medical conditions during their family member’s disease. Most commonly reported: Anxiety (38), Insomnia or other Sleep Issues (30), Depression (27), Excessive Weight Gain or Loss (25).
Conclusion
As evidenced, FTD is a “disease of the family” with a profound psychosocial impact. Support from the medical community is critical.
Co-authors: Beers M., Martinez R., Remember Me, LLC
