Jim Mangi never thought he’d be living out the later parts of the plot of Nicholas Sparks’ fictional “The Notebook,” but he is grateful he can stay a block from the Saline dementia treatment center near his wife, Kathleen, who is struggling to remember the life they shared.

Now at age 73, Kathleen Mangi lives in a Memory Support Center, where she and Jim spend every afternoon and some evenings together on her journey through early-onset Alzheimer’s disease. It’s been like this for 14 years.

“Obviously, now that the disease has taken her ability to walk, use a fork, talk much at all, or remember quite who I am, it has ostensibly changed her,” Mangi said. “But in a fundamental sense, my Kathleen is still the person I married 47 years ago, and always will be. And she hasn’t forgotten how to smile, or squeeze my hand. But, as her caregiver, I am different, too.”

Caregivers like Jim often find themselves subject to a patchwork of policies across the country that can make it difficult to know for sure what resources are available to them. But advocates and leaders across Michigan and across the country agree: Michigan can reform its laws to better support the million-plus caregivers in the state.

Aging agencies and advocates are asking for leaders to recognize the value of people all over Michigan who are serving as caregivers for children, aging adults, and those with unique needs on top of their own home responsibilities. Other states can offer a pathway to what has proven to work — if Michigan takes the action necessary to get there.

Studies have indicated that the informal system of those being taken care of by loved ones is close to a $450 billion industry, said Ron Taylor, president and CEO of the Detroit Area Agency On Aging.

Taylor participates on a statewide advisory council for direct care workers that has been advocating for increased reimbursement rates, payment, pathways for career development for caregivers, increased data collection and respite care.

“It’s critical we recognize the role and value (caregivers) play in caring for loved ones and to our most vulnerable populations,” Taylor said. “Reimbursements rates that individuals are getting to provide formal caregiving are less than working in fast food or car washing. And that’s currently the negative stigma surrounding the sacrifice of caregiving, but as a society, we have to garner a greater appreciation for the services being rendered.”

What Michigan is already doing

AARP, the nation’s largest nonprofit dedicated to empowering people as they age, heralded the signing of Michigan House Bill 5783 in July, saying it’s the most noteworthy step forward for transforming the state’s approach to long-term care.

The new budget earmarked an additional $15.3 million for what AARP calls a trifecta of hard-fought wins. It included $2.8 million for training infrastructure of direct care workers including a model curriculum, a structure to deliver it, a credentialing arm and job placement program.

AARP estimates Michigan is in critical need of at least 34,000 direct care workers beyond the 165,000 already employed in the state.

The industry is rife with low pay, unpredictable schedules, no job benefits and low satisfaction for the work. Turnover rates exceed 80% annually, with costs ranging from $6,160 to $7,893 per turnover occurrence, resulting in $684 million per year statewide, according to the AARP.

“Such high turnover and workforce shortages lead to a lower quality of care for the older adults and people with disabilities who rely on these services,” AARP notes.

The bill also expanded access to PACE, Programs of All-Inclusive Care for the Elderly, in Alpena, Marquette and Escanaba. This program integrates with Medicare and Medicaid financing for individuals age 55 and older. There are already 23 PACE centers covering only certain parts of the state. The bill appropriated funding to increase the number of people eligible for PACE in Wayne County, Traverse City and central Michigan.

The newest center opened in Detroit in October, but leaders there said the entire program could use more attention.

“Regrettably, PACE is one of the best-kept secrets in health care,” Mary Naber, president of PACE of Southeast Michigan, told The News during an event to celebrate the new center last month. “It’s so important to the care of older people who are chronically ill, but people don’t know about it.”

Lastly, the bill increased $3.5 million in general funding dollars to non-Medicaid in-home senior services provided through Michigan’s 16 regional Area Agencies on Aging to people age 60 and older. AAA provides help with daily activities like shopping, laundry and meals, which could mean the difference of allowing an individual’s family caregiver to remain in the workforce.

Michigan Department of Health and Human Services officials recognize that often, these caregivers work for pay rates that don’t reflect how valuable they are in the lives of those for whom they care. As a result, there are staffing shortages. MDHHS is working to provide greater support to caregivers — including better pay, said spokesman Bob Wheaton.

What needs to happen in Michigan

Caregiving legislation can be hard to pass in any state. Current and former Michigan lawmakers agree that with so many priorities before them when they’re in Lansing, it can be hard to focus attention on caregiving.

“The process of lawmaking is pretty cumbersome,” said Kathy Crawford, a former Republican legislator from Novi who helped to create a kinship caregiving advisory team before she left office in 2021. “It takes a long time to get something passed when you’re first in the House. You’re in a constant state of trying to get reelected, so it can be really difficult to have anything happen other than the biggest priorities in your time there.”

But groups are working to draw more attention to caregiving issues. That includes the Area Agencies on Aging Association, which is advocating for establishing Caregiver Resource Centers throughout the state, along with a nearly $17 million appropriation in its budget next year.

They’re asking for the centers to serve caregivers, who are considered people aged 18 and older caring for people 60 and older along with older relatives caring for children and adults with disabilities. If approved, the caregiver resource centers would be placed in the AAA’s 16 regions.

The National Family Caregiver Support Program was added to the Older Americans Act in 2016. It authorizes services such as information and assistance, individual counseling, support groups, caregiver training and respite care.

“But funding has lagged and there just aren’t enough resources for unpaid caregivers throughout the state,” said Julie Edgar, spokeswoman for the AAA 1-B in Southeast Michigan.

Their other proposals include creating a statewide clearinghouse for caregivers that includes webinars, videos, podcasts, live-streamed classes and a referral capacity to outside services.

AARP is also advocating for family caregiver tax credit, said Melissa Seifert, associate state director of AARP’s governmental affairs.

“Michigan continues to rank worse than many other states in terms of the large proportion of taxpayer dollars we spend to provide care in nursing homes compared to the smaller share of resources that go toward providing long-term care for older adults through home and community-based services,” she said.

She said 68.5% of Michigan’s Medicaid spending for long-term services and supports goes to pay for care in nursing homes, “instead of in people’s homes, where they want to be.”

The reality is most people at some point in their lives will be caregivers or cared for. But people don’t always think about it, particularly when they’re not serving as a caregiver. A survey by the Glengariff Group conducted for the New York and Michigan Solutions Journalism Collaborative and released in September found that a majority of respondents in Metro Detroit do not use paid caregiving services, instead relying on family and friends or just doing it alone. The Detroit News is a member of the collaborative.

More than half of the respondents had paid out of pocket for care. A 2021 survey from AARP found that the average caregivers spent more than $7,000 on out-of-pocket caring costs in 2021, money that in many places they will not get back.

Lawmakers created the Michigan Legislative Care Caucus in 2018 to champion the work needed to focus on caregiving at the legislative level. Rep. Padma Kuppa, a Democrat from Troy who will leave office next year after narrowly losing her seat, helped to form the caucus. It is designed to cover issues that cross the state’s geography, ethnic groups and partisan politics itself, she said.

The group is working to put forward legislation from a state-wide long-term care infrastructure study, Kuppa said. The group has not yet had any significant pieces of legislation come to fruition, but Kuppa expects that could change after Democrats won the governorship and both houses of the Legislature this month, commonly known as the “trifecta.”

“We have the right elements … to actually take some of these recommendations and get them into place,” she said, noting that she was excited to see what caucus chair Rep. Helena Scott will do. “But what we need now is all the stakeholders to stay engaged.”

What Michigan can learn from states with strong caregiving policies

In outside rankings, including those put out by groups like AARP, Minnesota and Washington have consistently ranked at the top of states based on their caregiving policies. Minnesota topped AARP’s most recent “Long-Term Services and Support Scorecard,” which looks at several factors to determine which states have the strongest policies to support those receiving care, as well as their caregivers.

Kari Benson, executive director of the Minnesota Board on Aging, said that part of the reason the state thrives is a commitment to creating and maintaining “a strong system of support for the older adults” who need it.

That includes programs that offer help around the house or with personal care. It also includes supporting family caregivers and making people aware of the services available to them. In Minnesota and in other states, the state will meet with caregivers to explicitly ask not only what they need in their role as a caregiver, but also what they need to maintain their own health. Minnesota is also working to provide eligible caregivers with “self-directed dollars,” Benson said — effectively a stipend for caregivers to use however would be best for them, be it for supplies, respite services or anything else.

The goal in Minnesota is a range of support, regardless of need. Those who need equipment for their loved ones should be able to get it just as people who need respite care should be able to get that as well. It’s not always possible to provide everything to everyone, but caregivers appreciate all the support they can get.

It is in part that the state has consistently had political leadership that invests in services for older adults, Benson said. But it also helps that the state supports family caregivers as well, helping to keep people in their homes as long as possible.

“If we as a state are able to provide some of that … that helps the family caregivers be able to do what they’re able to do — to be that loved one and really maintain that role,” Benson said. “We’ve found over the years is that it’s kind of the foundation. The more that states can grow their overall support for older adults … that really makes a difference.”

States that lead the rankings for caregiving often find themselves copying ideas from other places, officials from both Washington and Minnesota say. The things that work in one place tend to work in another to the benefit of all, Benson said.

As The News has reported previously, that work usually includes some combination of dedicating federal dollars toward caregiving, paying caregivers — even a small stipend — to give care to help offset the immense costs and reframing the work caregivers do to better connect with the people who may not even realize they are eligible for support.

But that work is only possible after a state has already funded caregiving and made it a priority. That’s why Benson and others on her team make sure they’re constantly putting in the work to meet with and relate to legislators who control the state purse strings, particularly when they’re in session.

“Especially during legislative sessions, we really try to capture not just the stories but we have real people talk about their lives and talk about their role as a family caregiver,” she said.

A special connection with legislators — particularly those with a personal tie to caregiving — has been key.

In Arizona, the state recently revamped its laws around kinship caregiving, or when family members who aren’t a child’s biological parent are caring for that child. That included upping stipends for kinship caregivers and also an increased focus on keeping children with their families when separated from their parents.

Nancy Williams, executive director for the Arizona Association for Foster and Adoptive Parents, said the improvements were the work of multiple organizations and legislators coming together and making caregiving a priority.

“There was a group for the last several years, grandparents who had been active at the Capitol and interacting with legislators,” Williams said. “They’d bring what they would call ‘cookies from grandma,’ homemade cookies that were from literal grandmothers wanting to talk about caregiving and kinship. It was a lovely personal effort, and the storytelling really helped to bring faces and names to the situation.”

The caregiving journey

Back in Metro Detroit, Mangi says he’s not sure how long he will be able to care for Kathleen. They have a daughter who lives in Ann Arbor he can count on but doesn’t like to think of a time without his partner.

Mangi, 74, has been advocating on the steering committee of the Michigan Dementia Coalition for years, often meeting with legislators and bringing up caregiving.

This was never what Mangi had envisioned for his life. He and Kathleen met in graduate school in New York where they both were pursuing science degrees. They married shortly after, and while Jim was an environmental scientist, Kathleen was working for the federal department of energy on clean-ups like the Manhattan Project. At home, Kathleen was an avid photographer.

“I built her a dark room in the house, and I remember it was always black and white. She didn’t care for color,” Mangi said. “I put together a calendar of all of her photos.”

These days, Jim puts a wool hat on Kathleen, pushes her wheelchair around the campus and the best days are when their daughter and two grandchildren, ages 5 and 3, join.

“The grandchildren interact with her respecting that she can’t talk back,” he said. “This caregiving journey has brought out more abilities and sensitivities than I, or my former business colleagues, ever thought I had.”