For the 11 million Americans caring for a husband, wife, family member, or friend with Alzheimer's disease or a related disorder, this New Year's Eve will be more hopeful than usual because Congress has finally voted to establish the National Alzheimer's Project Act (NAPA). From all of us who worry about the people who have this disease, and their family and friends, all of whom are coping heroically every day, a grateful toast to Congress and our passionate plea to President Obama to sign the National Alzheimer's Project Act (NAPA; S. 3036) swiftly into law.
NAPA would require HHS to create a strategic plan for the federal government's role in fighting Alzheimer's disease, form an advisory council, and coordinate research, care, institutional services, and home- and community-based programs.
This is good news and long overdue. America will be one of the last developed nations to make dementia a national public health priority and develop a strategic plan, lagging behind Australia, South Korea, Norway, France, England, Scotland, India, Malta, Cyprus, and Wales, even though Alzheimer's Disease International identifies, "develop[ing] national plans to deal with the disease" as the top priority in combatting the disease worldwide.
Now we must work together to create the best possible plan, drawing on all available research about what works and is available today to help families managing this degenerative disease, as well as what holds promise for the future.
We still have no cure for Alzheimer's, and the vast majority of research funding focuses on the search for drugs to prevent, delay, or reverse the course of the disease. This work is indisputably important; we are all hoping for a cure and rooting for our colleagues in the pharmaceutical and biomedical research field to succeed.
But drug research should not be allowed to overshadow excellent treatment options that are available right now -- options that too many never hear about.
We are glad to see that the bill mandates coordinating "care and treatment of citizens with Alzheimer's." This may sound obvious, but sadly, it is not. Many families have difficulty obtaining a diagnostic evaluation and most families are left on their own to manage daily care challenges as the disease progresses. America's strategic plan must include expanded availability of proven non-pharmacologic treatments and expanded funding to support researchers and providers of that care.
As the name suggests, rather than prescribing drugs, non-pharmacologic treatments (NPTs) employ counseling, skills training, activity engagement and occupational therapy-based strategies to provide families with the knowledge, skills, and support they need to protect their own health and cope with the intense demands of caregiving, while helping people with dementia maintain the best possible quality of life and stay independent and safe for as long as possible.
Several NPTs have been proven in randomized trial and peer-reviewed studies to improve patients' and families' quality of life and reduce the cost of care. Unfortunately, despite their proven effectiveness, NPTs have consistently received a fraction of the research funding and clinical reimbursement of drug therapies, which have so far done much less to help Alzheimer's patients. (The Rosalynn Carter Institute for Caregiving states that these programs are actually "more effective" than any known AD drugs.)
The evidence-based services provided by Thomas Jefferson University's Jefferson Elder Care and New York University's Caregiver Intervention are two examples of NPTs that answer World Alzheimer's International's call for policies and plans with "an explicit focus on supporting family caregivers." Families interested in finding out more about promising programs that can be helpful now can consult the excellent resource databases of the Rosalynn Carter Institute for Caregiving and the US Substance Abuse and Mental Health Services Administration's National Registry of Evidence-based Programs and Practices.
When the National Alzheimer's Project begins planning, we urge the advisory board to include:
• Increased funding for large scale demonstration projects that integrate the most promising non-pharmacologic approaches.
• Wide-spread training of health and human service professionals in proven dementia care and caregiver supportive programs.
• Expanding our current reimbursement structures so that Alzheimer's families can take advantage of existing, proven caregiver and dementia care programs at home.
• Expanding funding to support implementation of proven programs into different practice settings, including home care, hospital discharge services, and care management systems.
As we ring in this New Year, we will give thanks for our families, our independence, and our memories, and look forward to building a stronger national system to support those essential values for the Alzheimer's patients and caregivers who so desperately need it.
About the Authors:
Mary S. Mittelman, Dr.P.H., is Director of the Psychosocial Research and Support Program at the Center of Excellence for Brain Aging and Research Professor in the Department of Psychiatry at New York University Langone Medical Center.
Laura N. Gitlin, Ph.D., is currently director of the Jefferson Center for Applied Research on Aging and Health (CARAH) and co-director of its Jefferson Elder Care at Thomas Jefferson University. In the new year, she will be joining the Johns Hopkins University School of Nursing, and departments of Psychiatry and Geriatrics in the School of Medicine to further her work on dementia care.