Some 6 million people in the U.S. have some form of dementia, and with the rapid aging of the U.S. population, that number stands to grow dramatically in coming years. Meanwhile, two of the biggest assets available to people living with dementia—their homes and their families—are going largely underused as nursing homes fill up.
“The diagnosis of dementia strikes almost as much fear in people and their relatives as the diagnosis of cancer,” said Thomas E. Sullivan, MD, a retired cardiologist and president of SeniorCare, which provides and coordinates services to older adults and others needing assistance to help them live independently in a setting of their choice, in Northeast Massachusetts.
“It's not a diagnosis like mild chronic heart disease, or mild pulmonary disease, or significant arthritis,” Dr. Sullivan said. “Patients often feel ashamed.”
Many of the biggest problems that early dementia patients encounter are related simply to feeling alone.
“Very often, they’re isolated, they're lonely and they're semidepressed,” he said. “Companionship is a big issue, but so is not wanting to be a burden on family members.”
Why living at home is beneficial
Aging in place is now a mainstream strategy for caring for older people, even those with dementia.
“Being familiar with your surroundings, feeling safe, avoiding food insecurity, utilizing available help and having opportunities to use your brain—those are important attributes of good health.,” Dr. Sullivan said. “You might not be able to do as much as you did when you were young, but even a little bit goes a long way.”
The hangup for many family members, however, is that they lack training on how to care for someone with loss of memory and other cognitive abilities, said Dr. Sullivan, whose experience caring for patients along with his late sister and his late father still informs his work. Simply, providing help with feeding and toileting is just the beginning of it.
“You have to do some analyses to make sure the home is safe for the patient and the caregiver,” he said. You have to make sure there aren’t carpets that slip. You may have to equip the bathroom with handicapped handles. You might even have to move the bedroom downstairs” or make other modifications.
Joining forces could help
Dr. Sullivan’s work on dementia-friendly health systems draws on efforts of AARP and the World Health Organization, which is focused on communitywide initiatives, as well as the Age-Friendly Heath Systems initiative. The latter is a collaboration among The John A. Hartford Foundation, the Institute for Healthcare Improvement, the American Hospital Association and the Catholic Health Association of the United States.
The Age-Friendly Health Systems Initiative focuses on four evidence-based elements known as the four M’s:
- What matters, meaning the patient’s specific health outcome goals and care preferences.
- Medication that does not interfere with the other elements.
- Mentation, or dealing with delirium.
- Mobility to maintain function and do what matters.
“This doesn't mean everybody who gets older is going be demented, but that's clearly where the greatest prevalence is. It's a natural fit, as an opportunity for improvement,” Dr. Sullivan said.
Resources in short supply
A former 20-year delegate from Massachusetts to the AMA House of Delegates, Dr. Sullivan is now a member of the AMA Senior Physicians Section, which gives voice to and advocates on issues that affect senior physicians, who may be working full time or part time or be retired. In honor of Older Americans Month, the AMA celebrates older adult doctors in May with AMA Senior Physicians Recognition Month.
Dr. Sullivan has co-written a resolution on dementia-friendly health systems that will be presented at the 2023 AMA Annual Meeting next month.
“It’s sad to say,” Dr. Sullivan noted, “but there's just not enough funding for aging in place.”