More than 10 years ago, the late philanthropist LeRoy E. Hoffberger sought to improve the lives of people living at home with dementia and the lives of their caregivers. Together, Hoffberger and Dr. Constantine Lyketsos, director of Johns Hopkins Memory and Alzheimer’s Treatment Center, brainstormed on what became the MIND at Home: Memory Care Coordination studies. (MIND stands for Maximizing Independence)
Hoffberger, with an interest in aging and Alzheimer’s issues, and Lyketsos, an Alzheimer’s and dementia expert, recognized not only the need for better understanding and treatment of people living with the disorders, but also the growing need for effective home care as baby boomers age.
“It was estimated that 70 percent of the persons in the boomer generation will not be admitted to a nursing home — either they don’t want to or they can’t afford to — but will remain in the community,” Hoffberger said in a 2014 video interview.
Today, more than 5 million people are living with Alzheimer’s and related dementias in the U.S., according to the Alzheimer’s Association. Most, about 80 percent, live at home and are cared for by about 15 million unpaid, informal caregivers — often spouses or adult children. And while impacts on patients include medical and psychological problems, reduced quality of life and high costs for care, impacts on caregivers can also be severe.
Caregivers often juggle medical care, manage symptoms, offer physical, emotional, social and sometimes, financial support. “These caregivers are forgoing their own health in an effort to provide their family member or friend with the best care they can. Making sure caregivers are caring for themselves is a huge priority,” said MIND at Home principal investigator and gerontologist Dr. Quincy Samus.
“Hoffberger understood that there would be a lot more people with dementia and a huge need for programs like this,” study co-investigator and geriatric psychiatrist Dr. Deirdre Johnston said. “It was through their conversations that the program emerged.”
Originally funded with $2.25 million raised by Hoffberger, The Associated: Jewish Community Federation of Baltimore, and other organizations, the first phases of the MIND at Home study began in 2006, recruiting participants through local media and contacts from an earlier study, “Aging in Place in the Baltimore Jewish Community.”
“Key to this partnership has been the late LeRoy Hoffberger, The Associated, the Hoffberger foundation, the Weinberg Foundation, and many others who have supported this effort along the way,” Samus said.
Those initial studies spurred two more. Recruitment for the current studies, funded by $6.4 million from the Center for Medicare & Medicaid Innovation, and $3.4 million from the National Institute on Aging, was just completed. The CMMI study focuses on low-income seniors and their caregivers. The NIA study includes people from all socioeconomic levels. Both serve Baltimore City and a 40-mile radius around it.
“It is our hope that MIND at Home could be offered at community-based social service organizations like our partner, Jewish Community Services, home-care agencies like our partner Johns Hopkins Home Care Group [and other medical providers],” Samus said.
The main goals of the studies include helping people living with Alzheimer’s and dementia stay at home longer with a better quality of life and to address unmet needs of patients and caregivers. To reach that goal, a model of concise, coordinated home-based care was developed through in-home assessments. Needs might include improving patient safety and activities, better management of medical issues, preventing delirium, simplifying medications, treating behavioral and comprehension symptoms, improving communication and supporting caregivers through education, coping skills and finding more respite time.
Currently, Alzheimer’s and dementia care is often fragmented and not well-coordinated across healthcare providers. “Caring for persons with dementia can be complex. It also can be scary, frustrating and overwhelming for family caregivers who shoulder much of the burden,” Samus said. Care should be “family-centered, with patient and caregivers needs coming first.”
To assess and address a household’s complex needs coping with Alzheimer’s or dementia, Hopkins developed a new category of health worker called a memory care coordinator. Jewish Community Services and Johns Hopkins Home Care Group hired eleven people who trained with medical, psychiatric and social work geriatric/dementia experts from Hopkins’ Memory and Alzheimer’s Treatment Center. That expertise armed coordinators with skills to address those complex problems and offer education and resources to caregivers.
“A lot of studies deal only with the patient. MIND at Home includes caregivers and the stress they experience as well,” said Eleanor Fried, team manager of service coordination at Jewish Community Services. “JCS is proud to be part of a team that’s making such a difference in people’s lives.”
“Our nearly decade-long partnership with JCS on this project has been key to success,” Samus said. “With the sage leadership and support of Barbara Gradet, former executive director of JCS, and now Joan Cohen, we have been able to accomplish incredible work and service through research to the Baltimore community.”
A team consisting of the new memory care coordinators working with medical and mental health clinicians assesses each household and tailor services, delivered via multiple in-home visits by coordinators and as-needed video conferencing with clinicians. Video conferencing allows clinicians to consult with the coordinators, caregivers and patients in a “virtual house call.”
So far, the MIND at Home studies have shown that home-based dementia care delivered by community-based non-clinical coordinators supervised by geriatric clinicians is successful, low-risk, can keep patients at home longer, reduce unmet needs and improve quality of life. “This approach … has the potential to reshape the current dementia care delivery paradigm by linking, in a novel and cost-efficient way, medical and community-based care services,” the study said.
“We have created a new way of addressing a very serious problem,” Johnston said. “We have an opportunity to help people when they begin having problems, and get support in place so we can make things better for them. If it had not been for Roy, it would have been very difficult to make that happen.”
For Fried, of JCS, collaborating with Hopkins and the innovative memory care coordinators is fulfilling JCS’s mission of community service.
“The partnership between JCS and Johns Hopkins has been a huge success,” Fried said. “The MIND at Home project meshes perfectly with our agency’s goal of helping older adults age in place with as much independence and dignity as possible. Working with Hopkins allows us to expand our reach into the community and serve a population we don’t always get to impact.”
Resources: Jewish Community Services and Johns Hopkins Bayview co-sponsor the monthly Caregiver Cafe at Beth El’s Soul Center: soulcenterbaltimore.org/ caregivercafe; JCS Aging & Caregiving: jcsbaltimore.org/aging-caregiving; Hopkins MIND at Home study: mindathome.org.
Susan C. Ingram is a local freelance writer.