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Perspective | Magazine

At-home care for Alzheimer’s and dementia patients is a national crisis. Here’s how to fix it

A Caregiving Corps modeled after AmeriCorps would help fill the gap between what insurance covers and what families actually need.

Illustration of a person with a walker being assisted by someone.
Images from Adobe Stock/Globe staff illustration

One of the groups most devastated by COVID-19 has been individuals with Alzheimer’s and other dementias. This past summer, the number of deaths for nursing home residents with dementia was 20 percent more than expected. While these deaths were not all directly from the virus, the extended social isolation and other factors related to it contributed, and have been extremely detrimental to the health of those with dementia.

What gets lost in the fallout from the virus is what life has been like for caregivers of dementia patients. Rhiana Kohl had spent years as the primary caregiver to her husband, Alfredo, who was diagnosed with younger-onset Alzheimer’s at age 47, before the Watertown resident, now 55, was placed in a nursing home this year. When asked recently about pandemic-driven lockdowns, Rhiana said, “Quarantine? Social distancing? Isolation? This is just another day for family caregivers.... I can’t tell you the last time I went to the movies or to dinner with friends.”

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Family members of those who suffer from Alzheimer’s and other such diseases have long borne the brunt of the associated physical, emotional, and financial expenses. In 2019, more than 16 million family members and friends provided 18.6 billion hours of unpaid care to people with Alzheimer’s and other dementias, at an economic value of $244 billion. That’s on top of the direct costs of caring for those with Alzheimer’s, an estimated $305 billion this year.

Meanwhile, caring for an individual with Alzheimer’s disease exacerbates the health problems of the caregivers, nearly two-thirds of whom are women. The pandemic has made things worse for caregivers by eroding community support services and outside assistance.

Taken in sum, what we are seeing is our society’s failure to care for some of its most vulnerable members and their families. It doesn’t have to be this way. We can finally launch a national caregiving corps.

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The idea of a Care Corps, a volunteer group of caregivers modeled on the likes of the Peace Corps or AmeriCorps, was introduced in 2017 in Congress, but was not brought up for a vote. In September, it was reintroduced as the Care Corps Demonstration Act of 2020. It calls for the creation of locally based programs to provide care services in home and community-based settings.

The timing may now be right: With the COVID-19 pandemic sending unemployment to its highest rates since the Great Depression, a Care Corps would offer a novel approach to reviving economic growth while supporting one of our most vulnerable populations. Care Corps caregivers would have health insurance and benefits, and a healthy sum for pursuing an education.

The impact on Alzheimer’s patients and their families would be enormously positive. Most people with dementia — an estimated 70 percent — live at home or with family, and their care needs are met primarily by immediate family members, other relatives, and friends. Often, people must leave the workforce because of the demands of helping a loved one with dementia. A Care Corps would help these family members stay in the workforce while keeping their loved ones home longer, delaying costly institutionalized care. Right now, many of those with dementia in assisted living facilities could have continued living in their homes if they had received proper services and support.

This election cycle has been a banner year for public service policy proposals. A hallmark of Pete Buttigieg’s presidential bid was a national call to service, which outlined opportunities including actions on climate and caregiving. Massachusetts Senator Elizabeth Warren and US Representative Seth Moulton also made calls to national service in their respective presidential bids. A broad piece of national service legislation, the Cultivating Opportunity and Response to the Pandemic through Service (CORPS) Act — which would expand AmeriCorps and Senior Corps funding to help with pandemic-related needs — garnered attention over the summer in part because of its bipartisan support.

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Alzheimer’s and caregiving have been refreshingly bipartisan issues in a notoriously gridlocked Washington. In recent years, lawmakers on both sides of the aisle — notably Massachusetts Senator Ed Markey, a Democrat, and Maine Senator Susan Collins, a Republican — have worked to enact numerous increases in Alzheimer’s disease research funding through the National Institutes of Health. Creating a program of the magnitude of the Care Corps would be a coup for both parties.

The vast and still not fully realized impact of COVID-19 on our nation’s health care system and economy, coupled with the public health crisis of Alzheimer’s disease, present a historic challenge that must be met with bold policy solutions — and soon. The need is only growing. Nearly 14 million Americans are projected to be living with Alzheimer’s by mid-century. The expected cost of caring for them is staggering: more than $1.1 trillion (in 2020 dollars) per year.

As America pulls itself out of this pandemic, we need a national caregiving corps for all Americans.

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Daniel Zotos is the director of public policy and advocacy at the Alzheimer’s Association’s Massachusetts/New Hampshire Chapter. Matt Wilhelm is a New Hampshire state representative, an AmeriCorps alumnus, and recently received the 2020 Stoneman Brown National Service Advocate of the Year Award. Send comments to magazine@globe.com.