James Worthy, Michael Jordan and Dean Smith at a UNC Basketball game. Feb. 10, 2007. By 2007, Smith was suffering from dementia and often forgot the names of his former players. But his wife Linnea Smith said he always recognized they were people he knew and who cared about him. Photo credit: Zeke Smith, Wikimedia Creative Commons
James Worthy, Michael Jordan and Dean Smith at a UNC Basketball game. Feb. 10, 2007. By 2007, Smith was suffering from dementia and often forgot the names of his former players. But his wife Linnea Smith said he always recognized they were people he knew and who cared about him. Photo credit: Zeke Smith, Wikimedia Creative Commons

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By Rose Hoban

Caring for someone with Alzheimer’s disease can be a lonely and daunting task, even in the best of circumstances.

Linnea Smith, widow of UNC basketball coach Dean Smith, served on the Institute of Medicine’s Task Force on Alzheimer’s Disease and Related Dementias with Rep. Craig Meyers, who is a social worker. Smith came to the legislature Tuesday to talk about her experience of caring for her husband, who died as a result of dementia. Photo credit: Rose Hoban

That was the situation for Linnea Smith, the wife of legendary UNC-Chapel Hill basketball coach Dean Smith, who died in 2015 after suffering for years with dementia. One daughter moved home to Chapel Hill when her father became sick. The other, a physician, worked at a job with flexible scheduling, allowing her time off or to work from home in order to give her mother some respite.

“Their selfless giving sustained me and enriched their dad’s everyday life while dealing with relentless loss of function,” Smith told a legislative committee Tuesday. “They were involved almost every day.”

Dean Smith had resources, friends, an old office to go to every day with friendly faces and assistance at home.

But for many of the estimated 160,000 people in North Carolina who have Alzheimer’s, day-to-day life is far grimmer. And an estimated 448,000 unpaid caregivers in the state have the daunting task of providing care to loved ones with little help.

It’s this situation, and the coming “gray wave” of people with Alzheimer’s and other forms of dementia, that prompted the General Assembly to order a task force to devise a strategic plan for addressing this growing problem.

Read an issue brief created by the Task Force here.

Members of the task force, led by the N. C. Institute of Medicine, presented their findings to the Joint Oversight Committee on Health and Human Services, telling legislators that not only would making small investments in services help people cope, they’d save the state money in the long run.

‘Expensive disease’

The costs for caring for someone with Alzheimer’s can be stunning. Patients are often cared for by family members, who miss work, foot the bill for paid caregivers and often end up losing income.

The typical profile of a caregiver is a 49-year-old woman, said Doug Dickerson, head of the state chapter of AARP.

Nacy Washington, who cared for her mother with dementia, represented caregivers on the task force. Here she talks with task force co-chair Lisa Gwyther, who leads aging services at Duke University Medical Center, after they both presented about the difficulties of caregiving for people with Alzheimer’s to members of the General Assembly. Minority patients with dementia are diagnosed later and have less access to medications and clinical trials. Photo credit: Rose Hoban

“Since Alzheimer’s is a disease that lasts eight to nine years on average, that working woman ends up changing what she does … to the extent of pulling herself out of the workforce, to the tune of lifetime loss of income of $350,000,” Dickerson said. “That’s wages, that’s Social Security not paid into, loss of 401K and such.”

Long-term care usually takes place in the home and the community, not just institutions, said Adam Zolotor, head of the NCIOM. But when a person ends up in an institution, the cost for that care is enormous: The median annual cost for nursing home care in North Carolina is $77,471.

Many of those people who end up in nursing homes are low-income seniors covered by Medicaid. The task force found three-quarters of people with Alzheimer’s are admitted to a nursing home by the age of 80.

“Medicaid costs are 19 times higher for older adults with dementia compared to age-matched peers, and much of that cost is institutionalization,” Zolotor said. “This is an expensive disease.”

Task force co-chair Goldie Byrd, from North Carolina A&T State University told the committee minorities are more likely to develop dementia; they are diagnosed later and have less access to medications and to clinical trials for treatments and medications.

Return on small investments

One thing that’s been shown to help families cope is having respite services available to give them a break from caregiving and to keep family members at home.

According to Zolotor, every $158 spent in respite care delays nursing home placement by one week.

“A week in a nursing home costs about $1,200, so that’s a good investment,” he said. “That’s respite care that might be given throughout the year, it might be a weekend or a night or an afternoon once a week.”

James Worthy, Michael Jordan and Dean Smith at a UNC basketball game. Feb. 10, 2007. By 2007, Smith was suffering from dementia and often forgot the names of his former players. But his wife, Linnea Smith, said he always recognized they were people he knew and who cared about him. Photo credit: Zeke Smith, Wikimedia Creative Commons

But there’s not a lot of respite available to caregivers. Project Caregiver Alternatives to Running on Empty, or C.A.R.E., is the only state-funded, dementia-specific program in North Carolina. Lawmakers cut $500,000 from the program in 2011. At present, the organization has only three staff statewide. They provide referrals, education and caregiver support, but not much else.

Zolotor asked legislators to consider re-appropriating funds to the program.

He also asked lawmakers to consider supporting investment in the 2-1-1 program, a system that, like 9-1-1, provides an-easy-to remember phone number that people can call to ask for nonemergency help.

“Right now, our 2-1-1 system is fairly young and it’s not well populated and well curated with state-of-the-art information,” Zolotor said. The systems are often public-private partnerships that combine the expertise of state and local government agencies with of nonprofits like the United Way to staff call centers and provide information to callers looking for help.

“We’ve seen other 2-1-1 systems in states like New Jersey, Colorado, New York that are robust,” he said.

Zolotor also asked legislators to consider freeing up funding for programs such as Meals-On-Wheels, senior transportation and home-care services, all provided through the Home and Community Care Block Grant. Right now, there are 9,600 people on wait-lists for services.

“The funding in North Carolina has been flat for three years despite increases in the older population and increases in cost of services,” he said.

The big change Zolotor asked legislators to consider was to “decouple” state from federal dollars, which require those services be provided free of charge. If the state and federal money were separated, providers of state-funded services would be able to ask recipients to pay for some services on a sliding scale, thus spreading some dollars around.

Zolotor said the task force had other requests for legislators:

  • Support House Bill 816, which mandates a study of the needs of family caregivers. It passed the House in 2015 and is sitting in a Senate committee awaiting action.
  • Support House Bill 817, which allows guardianship paperwork completed in other states to be recognized in North Carolina. It passed the House in 2015 and is sitting in a Senate committee awaiting action.
  • Examine state laws to determine adequate legal safeguards for people with dementia.
  • Strengthen data gathering on elder fraud and abuse.
  • Expand the Medicaid Home and Community-Based Services Waiver program to allow for more subsidized adult day care and increased admissions to PACE and other programs. Currently, there is a waiting list of 8,000 people for these services.

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