November 20, 2019

An increasing number of millennials are caring for parents with Alzheimer's disease and other forms of dementia, and these younger caregivers face unique challenges along the way, Megan Thielking reports for STAT News.

New case studies: Keep Alzheimer's patients safe at home and in the community

Millennial caregivers face unique challenges

In 2017, nonprofit UsAgainstAlzheimer's looked at survey data from 235 million millennial caregivers in the United States and found that one-third of millennials caring for a patient with dementia said their caregiver responsibilities severely impacted their work. Some reported being fired or forced to reduce their hours, Thielking reports. Almost 80% of the respondents said it was very difficult to access affordable outside help.

Caregiving responsibilities can be challenging at any age, but compared with older peers, millennials are at a stage of life that can exacerbate the challenges, Thielking reports. For instance, millennials typically are less financially stable, just starting out in their careers, and in some cases are beginning college.

Jason Resendez, executive director of the Latino coalition of UsAgainstAlzheimer's, said, "This is a destabilizing disease for all communities, but has acute challenges for millennials and particularly millennials of color."

The survey highlights some of the challenges Kamaria Moore-Hollis has faced since her mother was diagnosed with early-onset Alzheimer's five years ago, when Moore-Hollis was 29, Thielking reports. Moore-Hollis' caregiving work entails navigating health insurance coverage, spending time on the phone, and searching for day programs and doctors for her mother.

'Filling in the role of a parent, for a parent'

But for Moore-Hollis, the emotional aspect of her work is the most difficult part. "If I have to make a health care decision or if I have to pay a bill or if I have to do stuff for the day program, that stuff, that's what I'm great at," she said. "It's the socializing and the emotional part of it that I am not so great at."

She added that she no longer has "an adult relationship" with her mother. "I can't talk about frustrations at work or marriage or you know, just things that happen when you grow up."

Resendez said that's common among all caregivers, but especially among those who have to care for their parents at a young age. "There's a role reversal there that causes emotional distress," he said. "You're filling in the role of a parent, for a parent."

In the survey, almost 80% of millennial caregivers of dementia patients said their role is emotionally taxing and that they want more help handling that.

Why support can be hard to find

But despite this commonality, Resendez noted, "There are very, very few resources tailored to younger caregivers."

Moore-Hollis said she used to go to a support group for young caregivers, but found it made her feel even more isolated. She was the only person of color in the group and was not in the same income bracket as the other members of the group, Thielking reports. For example, the group members often talked about experiences like coordinating in-home care, something Moore-Hollis has been unable to afford.

Moore-Hollis also said she would feel guilty talking about her experiences as a caregiver within the group. "Of course, I love my mother," she said. "But would I rather not be in this situation? Yes" (Thielking, STAT News, 11/4).

Keep Alzheimer's patients safe at home and in the community

The number of patients with Alzheimer’s and other dementias is projected to increase from 5.8 million to 14 million by the year 2050—amounting to an $800 billion annual cost to the U.S. health system. Patients live with dementia for an average of ten years, and require twice as many hospital stays as other older adults.

To manage this growing, complex population, providers need to invest now in support services that will keep dementia patients safe at home and in the community.

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