Alzheimer’s is an expensive disease — we need research to fight it

Alzheimer’s disease research is often used synonymously with the search for a treatment or cure. For the more than 5 million Americans currently living with this deadly disease and the projected 13.8 million expected to develop it by 2050, these scientific advancements are critically important.

However, also critically important is research into quality care and support. Person- and family-centered dementia care can improve quality of life and reduce costs for those affected. This week, leading experts in dementia care and services are gathered at the National Institutes of Health (NIH) for the National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers.

{mosads}Alzheimer’s is a progressive and fatal brain disease that requires a wide range of evolving care and services as the disease advances. During the early stage, an individual with dementia might need little hands-on care and could rely on home and community-based services.

But in the late stage, those who have the disease require an extraordinarily high level of care, often for many years. Studies show that people age 65 and older survive an average of 4 to 8 years after a diagnosis of Alzheimer’s dementia, and some live as long as 20 years with Alzheimer’s.

Alzheimer’s is the most expensive disease in America. In 2017, caring for people with Alzheimer’s and other dementias will cost the U.S. an estimated $259 billion, including $175 billion paid by Medicare and Medicaid according to the Alzheimer’s Association 2017 Alzheimer’s Disease Facts and Figures.

Alzheimer’s doesn’t just affect individuals — it affects families. In 2016, more than 15 million Americans provided 18.2 billion hours of unpaid care for people with Alzheimer’s or other dementias at an estimated value of $230.1 billion. These caregivers also had $10.9 billion in additional health care costs of their own due to the tremendous physical and emotional burden of caregiving.

It is in the interest of our nation to ensure people living with Alzheimer’s and other dementias have access to the highest quality person- and family-centered care. This summit will move the care research agenda forward at national, state and local levels, toward evidence-informed and evidence-based strategies, programs and outcomes that can improve care and services and payment models no matter whether that care is provided by family and friends or by care professionals.

Consistent with the National Plan to Address Alzheimer’s Disease and the Alzheimer’s Accountability Act, Congress has recently provided historic funding increases to the NIH for Alzheimer’s and dementia research. This funding has enabled studies that explore the creation of quality care standards and efficient methods of delivery.

But we can’t stop until we know more about how to care for those living with the disease and support their families as effectively as possible. Continuing increases in Alzheimer’s research funding are critical to providing affected families with the level of care they need and the support they deserve.  

Rob Egge is the chief public policy officer of the Alzheimer’s Association.