Excerpt from the NAPA Advisory Council final recommendations report (Image: NAPA Advisory Council)

A team that’s part of what was supposed to be an ambitious effort to fight Alzheimer’s disease, and other forms of dementia, has put off making any major proposals related to paying for long-term care services.

The team, the National Advisory Council on Alzheimer’s Research, Care and Services, is simply recommending that the United States try to get more information about the impact of dementia-related costs on people with dementia and their caregivers.

The country should “develop information about the impact” and “identify approaches to address negative effects,” the council suggests, in a presentation given last week in Bethesda, Maryland, at the Research Summit on Dementia Care.

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In a related report that was presented at the summit, the council fleshed out that proposal.

The council suggests that someone should get “comprehensive, descriptive information” about costs, including out-of-pocket spending figures for people who already receive Social Security Disability Insurance (SSDI) benefits but are still in the 24-month waiting period that SSDI recipients must go through before they qualify for Medicare.

Researchers should examine how the financial burden affects people’s quality of life, their access to care that could slow the progression of dementia, and their ability to participate in dementia-related clinical trials, the council says.

The council also recommends that someone should develop information and educational materials that can help people with dementia and their caregivers improve financial decisions and reduce their dementia-related out-of-pocket costs and financial burden.

The only references to private insurance come in a proposed patient survey questionnaire draft, and in a link to an appendix summarizing what private insurers told the council about paying for dementia care.

The council is part of a National Alzheimer’s Project Act effort to find ways to prevent dementia, cure dementia, and improve care for people and families affected by dementia.

— Read Insurers Wrestle With Dementia Care Quality Standards on ThinkAdvisor.

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