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Caring for the next generation of Alzheimer's patients

May 1st, 2014

by Anthony Cirillo

I attended a Health Affairs briefing for its April issue entitled "The Long Arm of Alzheimer's Disease." It was eye opening.

Many participants discussed a cure for the disease, but some presenters clearly understood that a cure could be a long time away--living with the disease is the bigger issue. When we look at people living with the disease, it's not just about patient care, but also their direct caregivers and other family members. It calls for new and perhaps unconventional partnerships.

For example, Laurie Ryan, the program director of Alzheimer's Disease Clinical Trials, National Institute of Aging, National Institutes of Health, discussed clinical trial recruitment and the need to find people who are "younger" and not manifesting the disease.

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That requires participation from primary care providers (PCP) who need to assess cognition and refer patients. Doctor-patient trust is the determining factor. If a patient trusts their doctor, they may want further screenings if they're potentially at risk. Statistics show PCPs miss diagnosing cognition problems 40 percent of the time. Cognition screening gives them one more thing to do. But shouldn't this fit perfectly into the patient-centered medical home model of care?

PCPs may seem like a traditional partnership. How about this next idea from Jason Karlawish, professor of Medicine, Medical Ethics and Health Policy at the University of Pennsylvania, who opened with an example of one of his patients. The first sign of the disease was financial issues--the husband couldn't manage the family money and problems erupted. Karlawish suggested the banking and finance industries are on the front lines of identifying the disease. While I never heard this before, it certainly is a valuable point.

He talked of society having a moral obligation to care for the caregiver. In a sense, he said we all have Alzheimer's disease because it impacts a huge part of society.

As the briefing went on, it became clear that the issue is much bigger then our present healthcare system can handle. Even a successful move from sickness to wellness or embracing population health doesn't quite capture it.

Thirty-three states developed and updated Alzheimer's disease plans over the last decade, noted David Hoffman, director of Bureau of Community Integration and Brain Health, Office of Long Term Care, New York State Department of Health. Common themes among them include coordination across service systems, healthcare quality and capacity, the need for earlier detection, and identification of gaps in service. And while states have updated plans, they have not made much progress in 10 years.

He also shared a new phrase--the Club Sandwich Generation--people caring for their parents, their children and their grandchildren. That is a new twist. And it speaks to the enormity of the issue.

Gary Epstein-Lubow, assistant professor of Psychiatry and Human Behavior and Health Services, Policy and Practice at Brown University, discussed personally dealing with his in-laws growing dementia. Family-oriented dementia care is the right thing to do, he said, and satisfies the triple aim goals of lower costs, improved quality and better experiences.

His story moved and personally touched me, given the new primary caregiver roles my wife and I were thrust into for my mom after my sister’s death.

I worry whether the healthcare system can really step up to this challenge. That is one reason I am excited to attend the 2nd Dementia Thought Leaders Invitational Summit in Washington, D.C., on June 30. CCAL-Advancing Person-Centered Living, Planetree, The Eden Alternative, and AMDA (The Society for Post-Acute and Long-Term Care Medicine) are convening the summit.

I am on the board of CCAL, and together with Planetree and The Eden Alternative, we formed the national Dementia Action Alliance to advocate for making person-centered dementia care practices the norm. Perhaps this is a galvanizing start to unite all the disparate players.

Anthony Cirillo, FACHE, ABC, is president of Fast Forward Consulting, which specializes in experience management and strategic marketing for healthcare facilities. He also is the expert guide in Assisted Living for About.com.

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