Today, more than 5 million people are living with Alzheimer’s and related dementias in the United States, according to the Alzheimer’s Association. 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 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.
Originally funded with $2.25 million raised by late Jewish philanthrophist LeRoy Hoffberger; The Associated: Jewish Community Federation of Baltimore; and other organizations, the first phases of the MIND at Home study began in 2006. Those initial studies spurred two more. Recruitment for the current studies, funded by the Center for Medicare & Medicaid Innovation, and the National Institute on Aging, was just completed.
The main goals of the studies include helping people living with Alzheimer’s and dementia stay at home longer. 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.
“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 11 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.
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." JN
Susan C. Ingram is a staff writer for the Baltimore Jewish Times, a Jewish News-affiliated publication.