Column: Dementia caregivers need help

  • Dallas Morning News illustration -- Michael Hogue Dallas Morning News illustration — Michael Hogue

To the Valley News
Published: 1/1/2022 10:10:44 PM
Modified: 1/1/2022 10:10:06 PM

In 2008, with little warning, my husband, Andy, was asked to leave a job he loved and excelled at. It was a total shock. From my vantage point, I had noticed the long hours and extent of his responsibilities seemed to be catching up with him, and I thought he might be suffering from exhaustion or depression.

At his job, there were subtle changes: missed deadlines, difficulty completing day-to-day tasks he had done successfully for years and slight changes in his demeanor. Nobody thought to ask why or to explore what was going on. Like others in the workforce experiencing the earliest stages of Alzheimer’s disease, his illness was misidentified as poor performance and he was simply asked to leave.

A year and a half later, when he was diagnosed with younger-onset Alzheimer’s disease at the age of 59, we finally had an explanation but no clear path forward. With his diagnosis, our world was forever changed. I was a mother of three school-aged children, working a part-time job. Now, I became the full-time caregiver for my husband, too.

I have worked in many demanding jobs throughout my life, but being a caregiver for Andy was the single most challenging and difficult job I have ever undertaken. It required every ounce of ingenuity, hard work and creativity I could muster to navigate the continually changing realities of my husband’s disease. I often felt alone on this journey, as I tried to figure out how best to manage Andy’s care and looked for help anywhere I could find it.

Sadly, my husband’s Alzheimer’s journey ended two years ago, but the difficulty of navigating this disease hasn’t changed. Caregivers are still going through the same challenges today that I did. With more than 6 million Americans living with Alzheimer’s disease and 11 million unpaid family caregivers bearing most of the burden, why can’t we do a better job of this?

The biggest obstacle is that our health care system is not set up to take care of chronic disease management. Right now, people living with dementia and their caregivers spend a lot of time trying to find their way through specialists, neurologists, therapy, insurance, tests and more, just to get an accurate diagnosis.

The way our health care system addresses care for individuals living with Alzheimer’s disease and other dementia is not sustainable. In 2020, 57,000 New Hampshire caregivers provided more than 82 million hours of unpaid care for someone living with Alzheimer’s disease, valued at almost $1.5 billion. In Vermont, 25,000 family caregivers accounted for 36 million hours of unpaid care. The value of that care totaled $717 million.

As the number of individuals with the disease continues to grow, the cost of care will not only increase the burden on families, but risks collapsing our entire health care system.

The first step to address this issue is for Congress to pass the Comprehensive Care for Alzheimer’s Act (S.1125/H.R.2517). This bipartisan legislation, endorsed by the Alzheimer’s Association, would create a path for better dementia care and address shortcomings in the way care is delivered. This legislation would call on the Center for Medicare and Medicaid Innovation to test a payment structure for dementia care management, which would bring great relief to caregivers trying to navigate a loved one’s care.

A better-coordinated path for dementia care would improve the quality of patient care, reduce the cost of health care services, eliminate redundancy and provide caregivers with a more streamlined path for their loved one’s care.

This is not a luxury. It is a necessity. This is what we must do to make sure our health care system is up to the challenges it is already grappling with. Please join me in asking our representatives and senators to support this critical legislation to change how our health care system addresses care for patients with Alzheimer’s disease and other dementia, and gives caregivers the help they desperately need.

Kathy Harvard is an advocate for the Alzheimer’s Association. She lives in Hanover.

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