Association for Frontotemporal Dementias

People with FTD

We are aware of a growing interest among people diagnosed with FTD for information and support tailored to their needs.  Several medical centers that serve people with FTD have developed programs for patients and we expect additional resources to grow.

This page will contain the resources AFTD is aware of for patients.  We look forward to expanding the list as more supports become available.

Northwestern University

An Early-Stage PPA Education and Support Group for diagnosed individuals – under the auspices of the Northwestern University Cognitive Neurology and Alzheimer’s Disease Center – meets at the Center in Chicago from 1 to 2:30 p.m. on alternate Thursdays. For more information, contact Mary O’Hara, LCSW, at 312-503-0604 or m-ohara@northwestern.edu [1].

Columbia University

An Early-Stage Dementia Group sponsored by Columbia University meets twice a month at the Metropolitan Museum of Art in New York City as part of the Museum Outreach Education Program.  The group serves people who are able to share their experiences and feelings with others. Some sessions follow a discussion format, while others are held in the studio where members create art.  Every few months, the museum provides an educator to lead a special tour for the group members and their spouses or caregivers. Participants and their caregivers receive free entry to the museum each time they meet.  For more information contact Jill Goldman at jg2673@columbia.edu [2].

UCSF Memory and Aging Center

People with FTD and other types of dementia meet monthly to create art in a supportive setting. Participants meet at the same time as UCSF’s caregiver support group, which allows caregivers to bring their relatives to the Center while the caregivers meet in a nearby room. For more information contact Ashley Berhel at aberhel@memory.ucsf.edu [3].

FTD Support Forum

An online resource for sharing information and support that is open to both caregivers and those diagnosed with FTD.  For more information visit http://www.ftdsupportforum.com/ [4].

Blogging about Life with FTD

Howard Glick was misdiagnosed with bipolar disorder in 2005.  In 2010, he learned he had FTD.  Howard has recently started a blog to help people with dementia, caregivers, friends and family.  He gives honest, real accounts of what living with FTD is like for him.  Click here to read Howard’s blog [5].

Online Support Group for Patients

Howard Glick runs a closed group on Facebook for people diagnosed with FTD.  Anyone interested in joining it can email him at howardjglick@gmail.com [6].