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Moving Toward a Cure While Addressing Care

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Our nation is on the move: moving toward a cure, while addressing care for families affected by Alzheimer's disease and related dementias. The U.S. Department of Health and Human Services (HHS) in May released the first-ever "National Plan to Address Alzheimer's Disease."

Much attention has been focused on this historic plan -- as should be the case, since it has been a long time coming. Mostly, all eyes have been on the research-oriented aspects of the plan. However, the document's clinical care and long-term objectives equally deserve attention. In fact, in the absence of a cure for this brain disorder, optimal care is the immediate answer for American families.

This historic report was the product of bipartisan legislation, rare in this Congress, which established an advisory council composed of government and private leaders, and which mandated a national strategy on Alzheimer's disease that would be updated annually.

What brought both political parties together was the growing realization of the need to confront this incurable disease that progressively robs people's minds and independence, and that ultimately causes death. The symptoms of this brain disorder are so insidious that it has gained notoriety as the most-feared diseases among older adults -- outpacing even cancer. The aging of the U.S. population means incidences of Alzheimer's disease will grow exponentially. Without a game plan, costs associated with the necessary care and services will exceed $1 trillion by 2050.

With the debut of the national strategy, the real work starts now. We must make sure that recommendations move forward.

Upon release of the plan, much of the media attention focused on its research components: a goal to deliver drugs that prevent or effectively treat the disease by 2025. Likewise capturing attention was a simultaneous announcement about the funding of two major research trials to prevent or halt the disease. The latter brought, and continues to spark, a swell of inquiries from consumers to the Alzheimer's Foundation of America's hotline, marking hope and, moreover, the awareness-raising necessary to bolster much-needed participation in clinical trials. On that point alone, the national plan has already made inroads.

As we move toward a cure, we cannot leave those in the shadows behind. Just as importantly, the plan's comprehensive approach recognizes that until research changes the trajectory of this public health crisis, clinical care and caregiving services are vital and overdue. Concrete goals in the plan address education, family support services, early detection, training for professional and family caregivers, coordinated long-term care, and more attention to services for ethnic populations and people with young-onset Alzheimer's disease -- all of which hold the promise of tangible relief for individuals and caregivers currently affected by the disease.

Family caregivers need support as they help their loved ones navigate this cruel disease. The plan recognizes that family caregivers must continue providing care while maintaining their own health and well-being by identifying unmet needs and disseminating best practices and evidence-based interventions, supporting caregivers in crisis situations, assisting families in planning future care needs by eliminating barriers to care and expanding long-term care awareness, and assessing and addressing the housing needs and potential for financial abuse of individuals with Alzheimer's disease.

In just the short time since the plan was announced, government agencies have begun implementing some of these strategies. Federal officials reported on the plan's progress at a meeting of the advisory council in late July. Among these efforts, a new government website provides education about Alzheimer's disease in a user-friendly style. As well, the Centers for Medicare and Medicaid recently unveiled an initiative that mirrors a proposal in the national plan calling for the need to monitor and reduce inappropriate use of antipsychotics for nursing home residents with dementia.

We applaud the movement that has begun but recognize that there is much more to accomplish. Now is the time for all Americans to weigh in and push for funding and action on other components: both cure and care. As political candidates and incumbents show up at barbecues and other events in their hometowns this summer, families affected by Alzheimer's disease now and those concerned about facing it in the future should do their own campaigning and press politicians for next steps on the long Alzheimer's disease road ahead.

Research is just one large piece of the puzzle. This disease does not discriminate. Until the day comes where there is a cure or medication that will halts progression, we all face the possibility of confronting Alzheimer's disease either as a person with the illness ourselves or as a caregiver. And the care needs will be overwhelming.

The National Plan to Address Alzheimer's Disease provides necessary guidance, but we must now embrace this challenge as a nation for as Gandhi said, "A true measure of a society is how it treats its most vulnerable members."

For more by Eric J. Hall, click here.

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