How People With Dementia Can Live at Home Longer

Gladys Gerben was always a loner, a trait that grew more pronounced after she was diagnosed with Alzheimer’s disease about four years ago. She was adamant that she would never leave her home of 30 years, in Edgemere, Md., outside Baltimore. Her son and daughter-in-law, who live minutes away, gradually took over more and more of her responsibilities: first the checkbook, then the car, until finally Sherry Gerben gave up substitute teaching to care for her mother-in-law, visiting her 10 to 15 times a day.

“I was raised that you take care of family,” says Sherry, who also cared for both her parents, who died of cancer.

In February 2016, the Gerbens got a boost from a program in Maryland called Maximizing Independence (MIND) at Home. Designed in 2006 by dementia specialists at Johns Hopkins University and offered to families as part of Johns Hopkins research that is still ongoing, it assigned the family a “memory care coordinator” named Britta Kilbourn. She assessed their needs, gave them educational materials and connected them to resources and benefits, such as a part-time aide to help with the difficult task of bathing.

“[MIND was] a wealth of information,” says Sherry. “I told my husband, if it hadn’t been for [them], I couldn’t have done this. They were really my lifeline.”

The Gerbens are among 15 million unpaid caregivers who take care of the nation’s 5.4 million people with Alzheimer’s and other dementias, 80 percent of whom live at home or with family. Like many programs, MIND at Home seeks to extend the time that people with dementia can remain in their homes and communities. The goals: to maintain a higher quality of life for them and to save Medicaid dollars, since Medicaid foots the bill for nearly two-thirds of nursing home residents, the majority of whom have cognitive loss. The Republicans' proposed health care legislation, if passed, would cut around $800 billion from Medicaid over the next 10 years.

A 2014 study found that people who participated in MIND at Home for 18 months had “a significant delay” in leaving their homes — which could include transitioning to a nursing home or an assisted living facility or dying — when compared to a control group. During a follow-up period more than two years later, the benefits continued:  MIND participants were still living at home 948 days, on average, from the time of their enrollment in the study, compared to 660 days at home for the control group.

The difference —288 days, or about nine-and-a half months — represents huge cost savings for families and for Medicaid, given the cost of care in long-term care facilities. In 2016, the national median monthly price of assisted living was $3,628. For a shared nursing home room, the monthly median was $6,844.

Those in the MIND program also had a significant improvement in self-rated quality of life. Caregivers benefited, too, from support and time savings.

Quincy Samus, an assistant professor at Johns Hopkins who leads the MIND at Home research team, is conducting two more studies of the program. One, through a $6.4 million innovation grant from the Centers for Medicare and Medicaid Services, focuses on low-income older adults and their caregivers. The other, funded with $3.4 million from the National Institute on Aging, looks at participants of all income levels. Both studies will gain insight into the program’s costs and long-term sustainability. Combined, they involve 647 people with dementia and an equal number of family members in central Maryland.

“The idea is we go into the person’s home with a multidisciplinary team that’s focused on best practices for dementia care,” explains Samus. Each participant and family member has a full assessment of needs to ensure that they have the proper diagnosis and that problems related to medication and behavior are addressed. The program checks each home for safety hazards, and an occupational therapist suggests meaningful activities for the person with dementia.

“We also look at how well their medical problems are being treated,” says Samus. “If they’re having high blood pressure or diabetes, these can exacerbate symptoms of dementia and all can contribute to unwanted or premature nursing home placement and a poor quality of life, not only for the person with dementia but their caregivers.”

Memory care coordinators develop an action plan for each family and check in at least every 30 days. “Things change over time, so we identify new needs that are emergent,” says Samus.

As important, says Sherry Gerben, is the emotional support. “You develop a connection with [the care coordinator], you know their heart’s in the right place,” she says. “Sometimes Britta would call and just the fact I could talk to her was helpful. And then she’d always say, 'And what are you doing for you? If you go down, you’re not going to help Mom. You have to take care of you.’”

“Ideally the MIND at Home program would be something that their primary care physician would write a prescription for at the time of diagnosis [of dementia],” Samus says, describing the future of the program as she hopes it will evolve. Participants would stay in the program as long as they remained at home, with costs covered by public and private insurers. Study results are not complete, but Samus estimates that MIND at Home program costs are $2,000 to $2,500 annually per participant.

Care coordination is a growing trend in health care, as providers, insurers and the government seek to reduce hospital and nursing home admissions and other costly medical care. One thing that makes MIND at Home unique, says Samus, is that the care coordinators are not clinically trained. The program is thus more affordable — salaries are $43,000 compared to $90,000 or more for a registered nurse.

“The care coordinators come from all different backgrounds,” Samus says. “The most important thing is that they enjoy working with older people, that they can relate and communicate well, that they’re creative and have a stick-to-it-iveness so they can solve problems by starting where people are. Dementia care is not rocket science, but it takes a deep understanding of dementia and how it’s experienced by people who have it, as well as family caregivers.”

Care coordinators undergo 40 hours of training and attend monthly team meetings where they collaborate on how to tackle challenges that arise for families.

Samus adds that focusing on people in their homes, rather than in a clinic, is key.

“We strongly believe the home should be the nexus for dementia care,” she says. Only then can the team get an accurate and full picture of the challenges families face.

Kilbourn, the Gerbens’ care coordinator, says she grew up helping her grandmother, who had Alzheimer’s.

“I was always comfortable around people with memory problems,” she says. She finds that two common needs of MIND participants are fall prevention and caregiver education. “A lot of times the caregiver doesn’t know what to expect and the doctors don’t tell them,” she says. “People think the person with memory problems is going to get better, or they don’t understand the progression of the disease.”

Supporting the caregivers is critical to the program’s success, Kilbourn says. “[Caregivers] are doing as much as they can, but they don’t feel like they are,” she says. “They don’t get the appreciation sometimes. It’s important for us to say, ‘You are doing a really good job with this.’”

On June 11 this year, Gladys Gerben, 88, died of pneumonia. She remained at home until the last month of her life.

Sherry Gerben was grateful to see Kilbourn at the funeral. After giving the eulogy, she called Kilbourn forward. She told the gathered family, “The rest of you didn’t meet her. But she was my rock.”