Dr. Linnea Smith said that when her husband, former UNC men’s basketball coach Dean Smith, developed dementia, they had family support, attentive doctors, and were able to provide for him an array of therapeutic treatments.
“And I still felt at times I was hanging on to a cliff by my fingernails,” she told a legislative committee Tuesday.
The N.C. Institute of Medicine recommended a state strategy for responding to Alzheimer’s disease and related dementias to the Joint Oversight Committee on Health and Human Services. The legislature ordered the report in 2014.
The task force report includes dozens of recommendations for improving care for dementia patients, supporting their families and reaching people who are underserved.
Smith said she was speaking as a representative of “probably the largest health care workforce in the country, that of family member caregivers.”
She acknowledged that other families do not have the same support and access to care that she and her family had.
“What about the care-giving spouse with diabetes and heart disease, and the children living states away? What about the single parent, living in the rural community with a full-time job caring for young children at home, and a parent with dementia?” she asked.
More than 160,000 people in the state have Alzheimer’s disease, according to the N.C. Institute of Medicine. More than 210,000 state residents are expected to be diagnosed with Alzheimer’s by 2025.
Nacy Washington, a member of the task force from Clayton, said she had trouble finding a safe place for her mother during the day. Her mother once wandered from an adult day care, she said, and in-home care didn’t work out.
“That was the saddest day of my life to have to take her to this rest home,” Washington said.
The report identifies multiple entities that would be involved in executing the comprehensive plan, including professional associations, the state Department of Health and Human Services, long-term care facilities, hospitals and others.
Dr. Adam Zolotor, Institute of Medicine president and CEO, focused Tuesday on the recommendations that would need legislative support.
Project CARE, the only state-funded program focused only on dementia, was cut $500,000 in 2011 and can no longer provide respite services, he said. Every $100 spent on respite reduces nursing home placement by one week, he said.
The legislature should also consider expanding a Medicaid waiver program to include more services for people with Alzheimer’s, saving money over time by delaying placement in long-term care facilities, the report says. In 2013, the state had a wait list of over 8,000 for the program, Zolotor said, with an average wait time of two years.
It’s important to consider programs that require small investments that return dividends, Zolotor said. There are examples from around the country where short-term cost increases resulted in “significant returns on investment in two to five years,” he said.