Alzheimer’s caregivers feel cost of care in multiple ways

Across the country there are more than 15 million Americans providing unpaid care for over 5 million Americans living with Alzheimer’s. Caring for individuals with Alzheimer’s or other dementias is emotionally, physically and financially straining, and poses special challenges due to the nature of the disease.

For example, people in the middle to late stages of Alzheimer’s may lose judgment, orientation, and the ability to understand and communicate effectively. Family caregivers must often help people with Alzheimer’s manage these issues. In addition, the personality and behavior of a person with Alzheimer’s are affected as well, and these changes are often among the most challenging for family caregivers.

{mosads}Caregivers of people with Alzheimer’s or other dementias are providing care for a longer time, on average, than caregivers of older adults with other conditions. Fifty-seven percent of family caregivers of people with Alzheimer’s or other dementias in the community report that they provided care for four or more years.

According to the 2017 Alzheimer’s Disease Facts and Figures report, in 2016, unpaid caregivers of people living with Alzheimer’s and other dementias provided an estimated 18.2 billion hours of care valued at more than $230 billion.

Alzheimer’s caregiving also has a devastating impact on the caregiver’s own health and well-being. According to a recent survey, more than 35 percent of caregivers for people with Alzheimer’s or another dementia report that their health has gotten worse due to care responsibilities as compared to 19 percent of caregivers of people without dementia. As the individual with Alzheimer’s progresses further into the disease, symptoms worsen and care needs increase causing caregivers to report stress, anxiety and even depression at high rates. This physical and emotional impact of dementia caregiving is estimated to have resulted in $10.9 billion in healthcare costs in the United States in 2016.

Alzheimer’s is the only leading cause of death that cannot be prevented, cured or even slowed. And, without significant action, as many as 16 million Americans will have Alzheimer’s by 2050. This explosive growth will place further strain on America’s unpaid caregivers, and the mounting costs threaten to bankrupt families, businesses and our health care system.

Thankfully champions in Congress are working to enact legislation that could alleviate some of the strain so many Americans face as a result of Alzheimer’s caregiving. One, the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1028), would require the development and implementation of a coordinated national strategy to recognize and support family caregivers. Introduced by Sens. Susan Collins (R-Maine) and Tammy Baldwin (D-Wis.), this important legislation would help improve health outcomes and result in a higher quality of life for those living with disease and their caregivers.

The Alzheimer’s Caregiver Support Act (S. 311/H.R. 2972), would provide training and support services to caregivers of people living with Alzheimer’s and other dementias through grants to public and nonprofit organizations to expand and improve their current programs.

Both the RAISE Family Caregivers Act and the Alzheimer’s Caregiver Support Act are consistent with the National Plan to Address Alzheimer’s Disease, which seeks to expand and enhance training, education and support for caregivers of people with Alzheimer’s and other dementias. The services provided by these important pieces of legislation will empower caregivers to provide quality care for their loved ones while giving them tools to manage and improve their own health.

This critical legislation deserves wide-support in Congress. And, while we work to enact this and other legislation that supports our nation’s caregivers, we must also advance our efforts to attack the disease at its roots through increased research funding. The Alzheimer’s Association and the Alzheimer’s Impact Movement are calling on Congress to increase Alzheimer’s research funding at the National Institutes of Health (NIH) by $414 million for FY2018. With bipartisan support we can end Alzheimer’s and support our nation’s caregivers.

Robert Egge is the Chief Public Policy Officer of the Alzheimer’s Association and also serves as the Executive Director of the Alzheimer’s Impact Movement.

The views expressed by this author are their own and are not the views of The Hill.