Leaders of the Association for Frontotemporal Degeneration (AFTD) feel as if they have to struggle even to get the nation’s top dementia agency, the Advisory Council on Alzheimer’s Research, Care and Service, to pay attention to their members.
The team that oversees and updates the National Plan to Address Alzheimer’s Disease has acknowledged that studying other forms of dementia, such as dementias related to frontotemporal degeneration (FTD) and Down’s syndrome, is important.
See also: Dementia: It’s more than Alzheimer’s
The dementia fighters have given some attention to non-Alzheimer’s dementia for humanitarian reasons, and because learning more about non-Alzheimer’s dementia may give researchers ideas about how to prevent and treat Alzheimer’s disease.
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For the U.S. population as a whole, Alzheimer’s disease is the big gorilla of dementia drivers. The Alzheimer’s Association estimates that about 5.3 million U.S. residents, including about 200,000 who are under age 65, have Alzheimer’s.
Only about 60,000 U.S. residents have behavior variant FTD or another FTD-related condition, primary progressive aphasia, according to AFTD.
They might be apathetic, have trouble with talking or understanding others’ speech, or have trouble walking. People with bvFTD might suffer damage to the nerve cells responsible for judgment, empathy and foresight.
For the insurance agents and brokers who sell major medical insurance and disability insurance, thinking about FTD-related disorders may be a way to get into the spirit of the November Long Term Care Awareness Month campaign.
More than 95 percent of the U.S. residents with readily identifiable Alzheimer’s disease are at least 65 years old. Most have aged out of employer-sponsored health and disability plans.
A majority of the people with FTD learn they have the condition when they are under 65. Many learn they have the condition when they are in their 40s, and enrolled in group health and disability plans.
If you persuade a 25-year-old to sign up for coverage through worksite LTCI program, the risk of developing FTD might be reasons why.
For a look at five reasons why AFTD leaders wish agents and brokers, and other Americans, were thinking more about them, read on.
1. They want your help getting a seat at the research grant allocation and patient support program design table.
Matthew Sharp, an AFTD representative, told the Alzheimer’s advisory council earlier this month that he was disappointed that none of the five nominees the group had proposed or supported was selected to serve on the council.