What does unpaid family caregiving look like in the Medicare Advantage population?

I don’t think many realize that, often, the people caring for older adults are older adults themselves. In fact, 19% of caregivers in the U.S. are over the age of 65. And that demographic will only continue to grow as our older population rises, lifespans increase, and more and more people choose to age at home.

Many of these individuals – 15.7 million adult family caregivers in total – care for an individual with dementia or Alzheimer’s Disease. People like Dale, who, at the age of 82, is his wife, Joan’s, primary caregiver. Since Joan developed dementia around five years ago, Dale has barely left her side. He wouldn’t want to be anywhere else, but at the same time, he admits it can be burdensome to be a 24/7 caregiver without much freedom.

Unpaid family caregivers in general face increased risk of physical and mental health problems, as well as a higher risk for mortality. And while caregivers aged 66-96 who experience caregiving-related stress have a 63% higher mortality rate than their peers who are not caregivers, dementia caregivers were even more likely than caregivers of other older people to say that caregiving made their health worse.

It’s a no-brainer that Medicare Advantage health plans have a greater incentive to provide solutions and resources that can help their members – those who receive unpaid family care and those who provide it – to live fuller, healthier lives. 

‍What initiatives exist at the national level to advance caregiver support, particularly for these caregivers you’re describing?

Well the issue got a push in April 2023 when the Biden Administration issued an Executive Order calling for increased support for family caregivers. In particular, the order called on the Department of Health & Human Services (HHS) to consider a new dementia care model that would include respite for family caregivers and make it easier to access Medicare beneficiary information. A few months later, CMS announced a new nationwide model to do just that – the Guiding an Improved Dementia Experience (GUIDE) Model, which will launch this July and include provisions for caregiving training, support, and respite services.

Recognizing that the challenges associated with caregiving are not just tied to age, but also race, economic status, and other social factors, the model incorporates policies to enhance health equity by ensuring that underserved communities have equal access to support. This includes a focus on low-income older adults, who are dually eligible for both Medicare and Medicaid.

At Papa, we’ve witnessed the higher need for support among dual-eligible members as well as those living in communities of color. In fact, we see two times higher utilization among those dually eligible compared to traditional Medicare Advantage members, while participants living in communities of color use Papa resources 25% more than those not residing in communities of color.

We applaud CMS for its continued push to advance health equity via this measure and the many others outlined in its Framework for Health Equity, as well as the agency’s efforts to expand support for caregivers and their loved ones.

How can family caregivers use Papa, and how is your model different from other options?

The idea for Papa actually came, in part, from a need to provide respite to our founder’s grandmother, as she cared for Andrew’s grandfather, “Papa,” who was in the early stages of dementia. Andrew founded Papa because the support he and his family needed didn’t seem to exist. His grandfather didn’t need help with bathing nor toileting – what he needed was a Pal – someone to spend time with him, drive him to appointments, and provide relief for his wife and other family members.

So Papa was founded to fill this gap. A Pal to your front door when and how you need it most. Health care that doesn’t feel like health care – it feels like family.

Caregiving takes so many forms and it can look a little different everyday. Some days a caregiver may want help picking up and preparing a meal, other days they may need someone to take their loved one to an appointment and stop at the pharmacy on the way home, and another day it may be most helpful to just have someone they trust stay at home with their family member so they can go out on their own for a bit.

That’s why we believe flexible, trusted, human help at home is needed to support caregivers in the ways they want and need to be supported.

Take Dale, who I mentioned earlier. Papa Pal Yvonne comes over every Thursday morning, putting a big grin on Joan’s face – and Dale’s, too. Dale gets to feel like he’s not “dumping [Joan] off on someone” and uses the opportunity to go grocery shopping, run errands, and enjoy some much-needed independence.  

Yvonne told us she can see the tiredness in Dale’s face sometimes. Some nights, Joan doesn’t sleep, which means Dale doesn’t sleep either. Getting that brief time alone on Thursday mornings helps him recuperate and recharge. And when he gets back, he and Yvonne take a little time to chat, too.

Yvonne has become a critical member of this caregiving team. “She’ll notice there’s something that needs to be done—small things, like the floors need to be swept—and she just does it,” Dale says. “I really appreciate that.” They make a good team, supporting each other as they support Joan.

Papa Pals like Yvonne have completed more than 2.2 million visits across over 7,300 cities since Papa’s founding. This personalized, trusted support is a coveted benefit for members like Dale and Joan and their families. And the ability to provide it at scale, thousands of times per day, is a game changer for Medicare Advantage plans looking to provide an extra layer of support for their members.

If we are ever to achieve our vision of a world where no one has to go it alone, we cannot leave family caregivers behind. It will take continued leadership from agencies like CMS and action from forward-thinking health plans to help get us there.

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Article written by: Kelsey McNamara, MPH, Head of Research and Impact, Papa