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‘I’m still happy’; Couple shares how they live with dementia

Click here to read an article from the StarPhoenix about a couple living with FTD, and how early diagnosis and connecting with a support group has made a significant difference.

What Happens When Your Kids Outclass You in Manners 101

Mankato Free Press Features editor Robb Murray shares his experience of being reminded to be more fully present by the example of his children in this article, which describes a visit during the holidays with his mother, who is living with FTD.

FTD Economic Burden Study

AFTD is pleased to share that the FTD Economic Burden Study, the first of its kind, is now underway.

Conducted by Dr. James Galvin, the study will quantify the economic burden FTD imposes on a family by surveying current family and caregivers of someone living with a diagnosis of FTD, as well as those who have served as caregivers within the last 12 months. Completing the secure, online survey will take approximately 1 hour. For the link to the survey, please visit https://tinyurl.com/ftdburden

As explained in an article in AFTD’s 2015 fall newsletter, the study represents an important advance in understanding the far-reaching consequences of FTD for families, the healthcare system and society at large. In addition, it is expected to provide the much-needed quantitative data to support and expand advocacy efforts, inform policymakers and increase research funding to develop effective treatments.

 

 

Dementia 101: Not All Dementia is Alzheimer’s Disease

A recent article in Neurology Now explains the differences between the four most common types of dementia (including FTD), and four other less common forms of dementia. Understanding these differences can affect planning, management, and prognosis. Read the entire article here.

Lewy Body Dementia Gets Spotlight

Autopsy findings identified that comedian Robin Williams was battling Dementia with Lewy Bodies (DLB), or Lewy Body Dementia, and his widow recently began offering interviews to share information about this disease.

Along with FTD, DLB is one of the diseases being addressed by the National Alzheimer’s Project Act (NAPA), the national strategic framework for advancing research on treatment, prevention and cures for Alzheimer’s disease and other dementias. In conjunction with Lewy Body Dementia Association Director of Programs Angela Taylor, AFTD Program Manager Matthew Sharp, M.S.S. has been advocating that NAPA’s Advisory Council should provide greater focus on both FTD and DLB, and greater clarity regarding research funding opportunities targeting the related dementias.

Media attention on DLB is timely, as the annual International Dementia with Lewy Bodies Conference will convene in the United States for the first time in early December. One of the objectives of the conference is to identify the differences and commonalities between DLB and other forms of dementia. For more information about the conference (Dec. 1-4), click here.