Alzheimer's Panel Speeds Past Planning Discussion

Alzheimer's disease plaque. (University of Pennsylvania School of Medicine Photo/James Eberwine) Alzheimer's disease plaque. (University of Pennsylvania School of Medicine Photo/James Eberwine)

Members of an Alzheimer’s disease advisory panel today spent little time talking about the recommendations they will make regarding the planning issues associated with the condition.

The Advisory Council on Alzheimer's Research, Care and Services – an arm of the U.S. Department of Health and Human Services (HHS) -- met to review recommendations that could be used to create a national plan for attacking Alzheimer’s disease.

Congress included the provisions creating the advisory council in the National Alzheimer’s Project Act of 2011 (NAPA). The council is supposed to help HHS come up with a plan for preventing and curing Alzheimer’s by 2025, and for improving support for people with dementia and their relatives.

The original draft plan includes provisions for increasing Alzheimer’s research funding and encouraging people to plan for the risk that they might need long-term care. The draft briefly mentions that idea that the government could encourage people to buy private long-term care insurance.

The Alzheimer's plan recommendations reviewed today include suggestions relating to matters such as Alzheimer's research priorities and clinical care for people who already have Alzheimer's disease.

The draft also includes a batch of "long-term services and supports" (LTSS) subcommittee recommendations on ways to help patients and caregivers.

The long-term care insurance (LTCI) community has not been visible in council proceedings, and the draft recommendations reviewed today do not use the word "insurance."

One section of the LTSS recommendations states that the services provided for people with Alzheimer's should include "outreach, screening; diagnostic; care and estate planning; treatment (medical, psychiatric, pharmacological and social/cognitive interventions (ex. memory classes); care/treatment advocacy (ex. Medication management, benefits counseling and patient navigation)."

A nearby section of the recommendations says services for families and caregivers should include, "outreach, advocacy; disease and self-care education; psycho-social support groups; supports for long distance caregivers; caregiver-centered dementia care management (such as T-Care); legal and financial (including family care tax relief policies and benefits counseling) services; a continuum of respite services; and supportive workplace family care policies."

"Services should utilize innovative gap filling and financing strategies," the LTSS subcommittee says. "CMS should provide guidance to all states on adding adult day services as a state optional service under Medicaid. Services should encourage development and provide LTSS linkages to state, local; and private supportive housing resources."

A little later, the LTSS subcommittee says, "The process of diagnosis should include engaging individual and family in advance care planning (health, estate and financial).... Health care providers should have ready access to information for referral of people diagnosed with Alzheimer’s disease and their family to community resources for financial and estate planning."

Dr. Laurel Coleman, a physician from Maine, said during the discussion of the LTSS recommendations that the council should insert the word "legal" between the words "health" and "estate" in the section on advance care planning.

"I see many patients so late they are not capacitated enough to complete legal documents," Coleman said.

David Hoffman, the director of New York state's Bureau of Chronic Disease Prevention and Control, Long-Term Care Restructuring, and Partnership, the moderator of the discussion, determined that there was no apparent opposition to Coleman's suggestion and said he would make the change.

Relatives of people with Downs syndrome have played an active role in council proceedings, and they have succeeded at persuading the council to recommend that the Alzheimer's plan include a section encouraging officials to develop support programs for people with Downs syndrome who begin to experience Alzheimer's symptoms relatively early in life.

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