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.

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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.

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.

Empty boardroom table

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.

The council did bring on Angela Taylor, a representative from a Lewy Body dementia group, but it also needs to consider the views of people with FTD disorders, Sharp said.

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 Eyes

2. They want you to know that they might look a lot different from people with Alzheimer’s disease.

People with Alzheimer’s disease are usually old and frail. They often have retired spouses who can act as caregivers, children old enough to be caregivers, and rich, easy-to-get Medicare benefits.

People with FTD may look great. They may be single parents in charge of young children. They themselves may be the members of the sandwich generation who are caring for young children, and frail elderly parents, and the dog, and a few goldfish, all at the same time. 

Sharon Denny, an AFTD representative, told the Alzheimer’s council earlier this year, said even primary care physicians, neurologists and psychiatrists may need basic information about the existence of FTD, and about the need to see whether working-age patients who are behaving in unusual ways may be suffering from FTD. 

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Woman

3. They need your help with starting difficult conversations about the importance of advanced directives.

Families affected by FTD may be too confused and busy to think carefully about planning for future care needs before they even understand that they’re affected by FTD. 

What if every family that had disability insurance, or medical insurance, or a credit card at least had some kind of basic advanced directive in place? 

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Counting

4. They need your help persuading someone to pay to count them.

AFTD reps have to rely heavily on anecdotal information about the condition and “rough estimates,’ because dementia research projects usually exclude people under 65. The reps would like to see more and better research on the number, characteristics and treatment trajectories of people with FTD.

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