The Slow Pace Of Alzheimer’s Research Funding
The urgent need for funding of Alzheimer’s research and the need of providing care for those afflicted with the disease is constantly in the news.
In recognition of this urgent need, in 2011 the National Alzheimer's Project Act was put forward in part by Sen. Susan Collins (R-ME) with then-Sen. Evan Bayh (D-IN), and it determined that annual research funding of $2 billion was needed to achieve the goal of preventing and treating Alzheimer's by 2025. So what has been accomplished by the act so far?
Will President Trump Fund Alzheimer’s Research?
Around February of 2018 a group of 14 senators led by Senator Collins, founder and co-chair of the Senate Alzheimer's Task Force, and Sen. Amy Klobuchar (D-MN) asked President Trump to boost funding allocated for Alzheimer's research in the fiscal year 2019 budget request he was to submit.
The group of senators wrote in a letter, “Alzheimer's is one of our nation's leading causes of death, and it is the only one of our nation's deadliest diseases without an effective means of prevention, treatment or cure,” The senators further stated in the letter that “If nothing is done to change the trajectory of Alzheimer's, the number of Americans afflicted with the disease is expected to more than triple by 2050,”
That cost is expected to be up to $1.1 trillion. However the proposed Senate funding bill for FY18 calling for $1.8 billion in funding for Alzheimer's research, an increase of $414 million, has not passed. Instead, legislators have been passing short-term funding measures.
Has then, the National Alzheimer’s Project Act Stalled? As of this report it seems it has.
The Law Will Require Development Of A Strategy To Recognize And Support Family Caregivers
In January, Congress passed and President Donald Trump signed the RAISE Family Caregivers Act. The law creates a strategy to support millions of people who help loved ones remain in their homes.
Here is what the new law will require.
- Require HHS to develop, maintain and update a National Family Caregiving Strategy, offering resources and education opportunities to family caregivers in the United States;
- Require HHS to convene a Family Caregiving Advisory Council to advise it on recognizing and support family caregivers;
- Promote greater adoption of person and family centered care in all health and long-term services and supports settings; and
- Ensure older adults with disabilities and illnesses receive high quality care in their homes.
Senators Susan Collins (R-Maine) and Tammy Baldwin (D-Wis.) and Representatives Greg Harper (R-Miss.) and Kathy Castor (D-Fla.) spearheaded the legislation.
The bill as it moved through congress was also backed by AARP. “Family caregivers are the backbone of our care system in America,” said Nancy A. LeaMond, AARP’s chief advocacy and engagement officer. “We need to make it easier for them to coordinate care for their loved ones, get information and resources and take a break so they can rest and recharge."
These family caregivers have a big job, but some basic support — and commonsense solutions — can help make their big responsibilities a little bit easier.
We are grateful to Congress and “This is forward progress, but it should not be the end of the journey. - Charles Fuschillo, Jr., President and CEO of the Alzheimer's Foundation of America
Across America, family caregivers help parents, spouses, children and adults with disabilities and other loved ones to live independently. They prepare meals, handle finances, manage medications, drive to doctors’ appointments, help with bathing and dressing, perform complex medical tasks and more — all so loved ones can live at home.
So What Will The RAISE Family Caregivers Act Really Do?
The RAISE Family Caregivers Act requires the U.S. Secretary of Health and Human Services (HHS) to develop, maintain and update an integrated national strategy to support family caregivers. According to the Act, HHS will create a national family caregiver strategy by bringing together federal agencies and representatives from the private and public sectors (like family caregivers, health care providers, employers and state and local officials) in public advisory council meetings designed to make recommendations. The agency will have 18 months to develop its initial strategy and then must provide annual updates.
So we can say that the aim of this new law is certainly needed, well intentioned and could be of great help to the 40 million family caregivers with an elder or disabled loved one at home. What could be wrong with that?
What We See Is Wrong With The RAISE Act
Funding, simply put. Implementing any national strategy will create a large cost that our polarized Congress is unlikely to fund. The RAISE Act is supposed to help family caregivers keep working outside the home. The question is: Who is going to pay for the replacement caregiver when the family caregiver goes back to work? Respite options are to be included as part of the Act. That means that the family caregiver gets time off to rest. And what happens to the elder or disabled person when the family caregiver is getting that break? Someone has to pay for the actual cost of placing the care recipient in a facility temporarily or paying someone by the hour to care for them temporarily. We have no such national programs now. Strategizing about programs is not the same as paying for programs.
Age Related Illness and Disease
Alzheimer’s disease and Dementia are affecting seniors in growing numbers. The result is literally millions of people become family caregivers and are quitting their jobs to care for their loved ones part time or full time. Passing a law requiring an integrated strategy is fine, however funding research to find a cure for the sixth leading cause of death in the U.S., Alzheimer’s disease, is hugely important. Caregiving for a loved one with Alzheimer's can last 20 years.
The RAISE Act is an important step toward more fully recognizing the impending crisis in caregiving as the aging population continues to grow. As improved guidelines and policies develop from the legislation, funding will be required to relieve the 2015 AARP estimate of $470 billion in unpaid care and the 2016 AARP estimate of $7,000 in out-of-pocket expenses provided annually by family caregivers. - Kathleen Kelly, Executive Director - Family Caregiver Alliance
We have not seen as part of this new law, any mechanism for Funding caregiver relief, disease research, housing assistance for seniors or any other important caregiver related need. Referring this lack of funding, Charles Fuschillo, Jr., President and CEO of the Alzheimer's Foundation of America is quoted in a press release from GlobeNewswire: “We are grateful to Congress and “This is forward progress, but it should not be the end of the journey.”...This encouraging development is only the tip of the iceberg. A dire need remains for the federal government to pass a Fiscal Year (FY) 2018 budget which includes $2 billion—up from the current amount of $1.4 billion—for Alzheimer’s disease research at the NIH." (National Institutes of Health).
Caregiver Training, Medical Assistance And Financial Relief
According to AARP, family caregivers “commonly experience emotional strain and mental health problems, especially depression, and have poorer physical health than non-caregivers.” And they rarely receive training in providing care.
And 78% of them incur out-of-pocket costs due to caregiving, spending $6,954 a year, on average, according to AARP. That’s estimate of $470 billion in unpaid care each year. Recognizing and strategizing about this with a new law is not the same as funding a solution.
What Concerns Me Is What’s Missing In This Law
To be effective and not just a list Advisory Councils, Strategies, and Unfunded Departments, I see several main things that could be put in place rather quickly and which would provide much needed help for families faced with a senior caregiving situation. Consider the following:
- Allow family caregivers an amount stipulated on their tax return that funds their lost wages in regards to social security. In other words fill those gap years in their ss earnings with a stipend so they do not lose benefits they will need when they themselves retire.
- Congress needs to pass a law allowing Medicaid funds to be used to pay for Adult Foster Care Homes and not just nursing homes. These homes cost on average ½ of the cost of a nursing home, which is the only option open to those whose funds have run out. The care in these homes as good and many times proven to be better than traditional nursing homes. The smaller environment can be a great benefit to patients with forms of dementia and Alzheimer’s disease and the staff to patient ratio usually much better. Just ask, me I am a huge advocate for these homes.
- Allow family caregivers who leave work to care for a loved one to draw a caregiver wage from the government if they meet certain income requirements. If a person cannot financially leave a job to care for someone, that person ends up in a nursing home and that cost the government and the economy on average 8-10,000 per month per resident! Again you could pay a family caregiver a fraction of that, save money and the patient gets better care! It’s a win win solution.