Patricia Kienholz: State’s Alzheimer’s patients and caregivers need continued support from Congress
There is a rampant trend happening across Washington state that more people need to be talking about – the increasing prevalence of Alzheimer’s and other dementia is taking a significant mental, physical and financial toll on caregivers across the state.
I should know, I am a full-time caregiver for my brother, a veteran of the Navy, who developed dementia and aphasia as a result of a catastrophic stroke four years ago. I also cared for my uncle for five years when he developed dementia, and have witnessed the effect of this condition on a number of other members of my family.
My experience of caring for my brother and uncle is unfortunately not unique for families facing a dementia diagnosis. For the 120,000 people in Washington age 65 and older living with Alzheimer’s, family care is the primary care. The burden of the disease falls on 300,000 family caregivers in Washington state. The Alzheimer’s Association estimates that unpaid caregivers in Washington perform 434 million hours of care annually – which amounts to $10.9 billion in value.
Unpaid care is an additional hurdle for families who are dealing with the weight of slowly losing a loved one to the disease. It requires not only direct care for the person living with dementia, but also indirect care such as cooking, cleaning and housekeeping. These tasks are really only the tip of the iceberg. Like so many others, my family has faced a whirlwind of stress from the financial, personal and practical demands related to dementia care and treatment.
In addition to the strain on family caregivers, providing care for people living with dementia is straining state government budgets and health systems. Caring for people living with Alzheimer’s cost Washington’s Medicaid program an estimated $547 million in 2020 alone. There were also approximately 63,000 home health and personal care aides in 2020, but an additional 27.6% (17,000 care aides) will be needed to meet demand by 2030.
There are reasons to be optimistic about the future of dementia care. Thanks to bipartisan support in Congress, we are seeing improved access to dementia care and to Food and Drug Administration-approved Alzheimer’s treatments. But more work remains, which is why Congress is considering the reauthorization of the National Alzheimer’s Project Act. This landmark legislation, originally passed in 2011, led to increasing the national investment in Alzheimer’s and dementia research sevenfold from previous levels. NAPA spurred groundbreaking research that continues to improve care and treatments for Alzheimer’s and other dementia. Passing the NAPA Reauthorization Act would also help address health disparities among underrepresented populations.
The bipartisan Alzheimer’s Accountability and Investment Act would also direct the National Institutes of Health to continue to submit an annual budget to Congress to ensure Alzheimer’s and dementia research is adequately funded to achieve the goals in the National Plan to Address Alzheimer’s Disease. It would allow scientists to work faster to advance basic disease knowledge, explore ways to reduce risk, uncover new biomarkers for early diagnosis and drug targeting, and develop potential treatments.
We are at a crossroads for determining the future of Alzheimer’s and dementia treatment and research. With families continuing to struggle daily to adequately care for their loved ones with this disease, and pending legislation that could determine what the next decade of research and treatment looks like, we must act now to give hope to the millions of patients and families across the U.S.
House Energy and Commerce Committee Chair Cathy McMorris Rodgers has long been a champion for families impacted by Alzheimer’s and other dementia across Washington state. She directly helped my family in expediting some complicated processes for my uncle and, later, my brother – making me a believer in the ability of Congress to address issues if they know what those issues are. McMorris Rodgers has also been a vocal champion for access to FDA-approved Alzheimer’s treatments during multiple committee hearings. I hope we can count on her continued leadership, and all of Washington state’s congressional representatives, to support swift reauthorization of these important pieces of Alzheimer’s legislation.
Patricia Kienholz was born and raised in Spokane, where she is a single mother, full-time caregiver and community volunteer for affordable housing and Alzheimer’s causes.