With the numbers of Alzheimer’s disease patients expected to reach 13.2 million coupled with an estimated price tag of $1.1 trillion (in 2011 dollars) by 2050, lawmakers and those in the healthcare industry know how imperative it is that the country get a handle on the disease.
To that end, the first national plan to address the medical and social problems associated with Alzheimer’s disease and related dementias is in the process of being developed by a advisory council of more than two dozen members. The final plan, expected this spring, will be submitted to the U.S. Department of Health and Human Services, which has the authority to disregard it or alter it.
“This population (Alzheimer’s patients) cannot be ignored by anybody,” said Laurel Coleman, MD, a Maine-based geriatrician who is a member of the national plan’s advisory council, “because of the growing cost and that it becomes really unsustainable over time when we don’t do a better job both in changing the process of the disease – that’s the research end – but also changing the way we care for people with the disease. It’s not to be ignored whether it’s on an economic ground or a medical ground or philosophical. It’s going to touch different parts of the healthcare system.”
Required by the National Alzheimer’s Project Act signed into law by President Barack Obama in January, the national plan is developing into a strategy to attack the disease and its ripple effects on multiple fronts.
Currently, the advisory council’s first draft includes proposals to have effective means of preventing and treating the disease in place by 2025; institute a marketing campaign to raise public awareness; lean more on primary care providers and give them the tools to assess the signs of dementia; improve care planning; focus on aiding the non-professional caregivers who shoulder the bulk of the responsibilities for caring for Alzheimer’s patients; and increasing the education and training available for doctors and other professional providers of care to Alzheimer’s patients.
While a debate has already begun on the specifics of the goals the plan should have and how those rank in importance, how it will be paid for and whether the treatment/cure target date of 2025 is aggressive enough, several ideas stand out for those engaged in the field: finding a cure and effective treatments, supporting caregivers and education of the public and of professionals.
“Ideally, we should be striving to find a cure and effective treatments to truly slow down the progression of Alzheimer’s disease,” said Jennifer FitzPatrick, founder of Jenerations Health Education. But, she added, things like education and support for caregivers are important as well.
From the perspective of Eric Hall, the president and CEO of the Alzheimer’s Foundation of America and a member of the national plan’s advisory council, using the plan to support caregivers is a top priority.
The costs associated with Alzheimer’s disease are staggering, Hall said, especially for non-professional caregivers – most frequently family members of Alzheimer’s disease patients – for whom the toll of caring for a loved one with Alzheimer’s can mean declining health and a hit to their personal finances.
A 2011 report by the Alzheimer’s Association found that the toll of caregiving is estimated to result in $7.9 billion in increased healthcare costs, which makes a dent in the 17 billion hours of unpaid care valued at $202 billion in 2010 that unpaid caregivers saved the country.
“This disease can devastate the individual, but ultimately it has enormous implications on the (caregivers),” Hall said. “I think we need to support them in their role, which ultimately, I think is in the best interest of the country, financially. The healthier they are, the more rested they are, the more supported they are, the longer they will be able to continue caring for their loved one, which minimizes institutionalization. It’s a win-win. But we need to be getting to that point of thinking like that.”
No matter what the final plan looks like, Hall said, it will take political commitment to make it a reality. “The political commitment is going to come by the nation raising a voice as loud as the AIDS advocates did to properly get funded. A problem with our disease state is that we don’t have survivors. A lot of our folks are not able to speak for themselves.”