One commenter wants the draft National Plan to Address Alzheimer’s Disease to give more information about long-term care insurance (LTCI), because the product has helped her provide long-term care (LTC) for her parents.

Another commenter says nursing home insurance did little to help him care for his wife.

Those individuals are two of many who have sent their thoughts about the draft plan to the Advisory Council on Alzheimer’s Research, Care and Services.

The council is trying to improve support for people with dementia and their caregivers, and to energize researchers enough to get them to find effective treatments for the condition by 2025.

During a teleconference the council held last week, one caller noted that the National Institutes of Health devotes about 19% of its budget to cancer research, 9.9% of its budget to HIV research, and less than 2% to Alzheimer’s research.

Another caller urged the council to devote extra resources to studying Alzheimer’s in people with Down syndrome. About half of the people with Down syndrome who live to age 50 have symptoms of Alzheimer’s, and many already show signs of developing the condition at the age of 2, the caller said.

Members of the council spent some time talking about financial support for people with dementia but almost no time talking about private savings, insurance and planning mechanisms.

Up till now, few of the members of the public who have submitted written comments have mentioned insurance.

But Debra Hassinan, an environmental engineer consultant in Tempe, Ariz., has asked why she has not seen “anything planned for costs” in the draft plan.

“Why is long term care not covered by Medicare, health insurance or Veterans Administration?” Hassinan asks. “Memory care is extremely expensive; it is basically round the clock care by skilled staff trained in Alzheimer care.”

Susan Brisendine of San Francisco says availability of private LTCI benefits has been a big help since her parents developed Alzheimer’s disease about 4 years ago. The country also should provide Social Security credit, tax credits and waivers of 401(k) fees for caregivers who leave paid employment to provide care, she says.

People also need a more honest setting of expectations, Brisendine said.

The caregiver support section in the draft national plan “needs a more transformative ‘glass breaking’ approach, not simply awareness building,” Brisendine says. “People know a little about LTC, etc., but the costs are high and the sales pitches are muddled.”

Thomas Logan of Belden, Miss., says he had a hard time getting his wife into a nursing home, even though he had enough LTCI coverage, because nursing homes prefer patients who need expensive rehabilitative therapies to patients with Alzheimer’s. He ended up getting his wife into an assisted living facility that charged $90 per day.

Later, he says, his wife entered a hospice that billed Medicare $1,000 per day and might have been twice as good as the assisted living facility but was not 11 times as good.

“The hospice industry is getting fat on what it charges, and it is completely inadequate for the treatment of Alzheimer’s,” Logan says.

What would LTCI producers, underwriters, actuaries and case managers say to the council?

So far, it looks as if only one of the entries posted comes from an LTCI professional.

But much of the ground the council covers in the draft plan is the same kind of subject matter companies such as Genworth Financial Inc., Richmond, Va. (NYSE:GNW), and John Hancock, Boston, have been covering in reports about LTC and LTCI for decades.

The LTCI community might be able to contribute:

  • LTC cost data.
  • Information about psychological and financial barriers to planning.
  • The difficulties facing caregivers.
  • The difficulties facing individuals and organizations that want to help people with dementia.
  • Running public awareness campaigns and consumer action campaigns.
  • Accounts of how MetLife Inc., New York (NYSE:MET), and Prudential Financial Inc., Newark, N.J. (NYSE:PRU), helped defeat another scourge, tuberculosis, back in the early 1900s.

Alzheimer’s seems formidable today, but not necessarily any more deadly and unstoppable than TB was years ago.

Some still suffer from antibiotic-resistant forms of TB, but not nearly as many as suffered before life insurers went to work promoting pasteurization of milk.

Maybe, 100 years from now, LTCI carriers will help make Alzheimer’s an obscure condition that plagues a few unlucky souls on isolated asteroids, not common disruptor of old age.