Alzheimer's Awareness and Advocacy: No Time to Waste
All you have to do is listen-really listen-to people newly diagnosed with Alzheimer's disease to know our nation has no time to waste in developing a national strategy to defeat this devastating disease. Their sheer terror runs high: they know their ultimate fate-with no cure, the disease will run its course of a steady, debilitating decline and dependency, and then death. That is the unfortunate but harsh reality.
All you have to do is listen-really listen-to family caregivers of loved ones with Alzheimer's disease to know that our nation has no time to waste. Their worry and stress are at a feverish pitch: with enormous daily responsibilities and an overwhelming financial burden, the toll impacts every aspect of their personal and professional lives and eats away at their physical and emotional health. That, too, is the unfortunate but harsh reality.
In fact, a new survey by the National Family Caregivers Association confirms that worry over a loved one's health and physical decline top the list of fears among family caregivers of people with Alzheimer's disease.
Now is the time to face this universal truth: Our nation has no time to waste. Given that, the Alzheimer's Foundation of America (AFA) last week released specific, hard-hitting recommendations for research, clinical care and long-term care to tackle Alzheimer's disease, and we urged swift implementation of an "integrated national strategy" on this growing public health crisis, as mandated under the new National Alzheimer's Project Act (NAPA).
My recent appointment to the Advisory Council on Research, Care and Services, which was formed to advise federal officials on this national plan, is not only an honor, but also an intense obligation to the millions of families that AFA and our member organizations serve.
They're counting on us to not waste any more time. Already, we are behind the global landscape, where seven countries and more than 25 states in our nation have Alzheimer's disease plans in place.
As we now forge forward with developing a national strategy, we must attack this crisis from multiple vantage points in order to serve all stakeholders.
Our calls for action include wide-scale public awareness campaigns, including messaging to drive earlier detection and to "shift the focus from fear to acceptance of the disease."
Early detection is the critical pathway to available treatments, support services and end-of-life planning that can improve the quality of life for people with Alzheimer's disease and their families. We must replace restricting factors, like fear, stigma and lack of knowledge among the public and professionals, with empowerment and education. And we must take the success we achieved in including "detection of any cognitive impairment" in the new Medicare Annual Wellness Exam a step further by including a cognitive screening as part of the visit.
Now is the time to make a substantial investment in research: $1.4 billion at a minimum in the President's proposed FY 2013 budget-an increase of at least $300 million from FY 2011-for the National Institute on Aging into the prevention, treatment and cure of Alzheimer's disease, as well as up the focus on clinical research, such as safety issues, non-pharmacological behavioral interventions and end-of-life care.
While all chronic diseases are worthy of our attention, we can no longer tolerate Alzheimer's disease taking a back seat in government coffers to investment in other disease states, especially as its death rate rises while the rate for other illnesses like cancer and heart disease falls.
Looking at other constituencies, additional dementia training and reimbursement for primary care clinicians will not only assist with deficiencies in identifying and treating Alzheimer's disease, but it will also help affected Americans get the time and care they need throughout the lengthy progression of the disease. Incentives for direct-care employees can help close the gaping shortfall in healthcare professionals to care for our aging population.
For family caregivers, the backbone of our care system, we must provide greater training and support for family caregivers of all demographics throughout the continuum of care. Just imagine the enormous difference strategies like tax credits for individuals with substantial long-term care needs or for their family caregivers, and Medicare and Medicaid coverage for adult day and respite services can make. And we need inclusion across all age groups-support services for the under-age 65 Americans with young-onset Alzheimer's disease, and the teens and young adults who may be helping with care of their parents or grandparents.
With the incidence of Alzheimer's disease skyrocketing, we can't afford to leave any stone unturned. NAPA is a once-in-a-lifetime opportunity to change the conversation about this devastating illness-but we must do it right.