The statistics look daunting.
In North Carolina, Alzheimer’s disease affects one in seven people over the age of 65. The number of people living with the disease – 160,000 – is expected to reach more than 210,000 by 2025.
“When we speak to groups and ask if they’ve had a loved one affected by Alzheimer’s, just about everyone raises a hand,” says Dr. Adam Zolotor, president and CEO of the North Carolina Institute of Medicine. “This has become a human experience that’s common to us all.”
In 2015, the North Carolina Institute of Medicine – in partnership with the N.C. Department of Health and Human Services Division of Aging and Adult Services – formed the Task Force on Alzheimer’s Disease and Related Dementia to develop a strategic plan for the state.
Under a mandate from the General Assembly, the task force aimed to:
- improve statewide awareness
- support people with dementia and their families
- improve and enhance services to support quality of life
- reach the underserved
- improve data collection and research around treatment and prevention.
Funding came from The Duke Endowment, AARP NC, the Alzheimer’s Association, Alzheimer’s NC, Carol Woods Retirement Community, Carolina Meadows Retirement Community, Leading Age NC, Southminster, NC Division of Aging and Adult Services, and the Winston-Salem Foundation.
The recommendations call for incremental investments in respite care, home and community services, and Medicaid waiver programs that will support caregivers, delay institutionalization, and decrease Medicaid costs over time, Zolotor says.
He discusses the task force and its recommendations in the following interview.
Why is this an important issue for North Carolina?
We have an aging demographic and a growing prevalence of Alzheimer’s. Added to that is the decrease in the number of people aged 45-64 who can provide care for them. Right now, there are about eight middle-aged adults in the population available for every one person over the age of 85.
In 2030, we're going to have about four middle-aged adults for every one person over the age of 85.
Is that part of the “silver tsunami” we hear so much about?
I call it ‘the baby boom’ and ‘the baby bust.’ The big increase in the birth rate that we saw after World War II has turned into a big decline. That's going to mean a short supply of caregivers over the next 15 years.
How did the task force begin?
In 2014, the General Assembly passed Senate Bill 744 requiring the Department of Health and Human Services to create an Alzheimer's plan for the state. Forty-two other states already had an Alzheimer's plan, and the North Carolina Alzheimer's Association had been advocating for this for a while.
How did you form the task force?
We began with a steering committee of knowledgeable people, who then proposed stakeholders that needed to be around the table.
Who were some of those stakeholders?
We had two caregivers representing the consumer voice, which we thought was very important. We had staff from continuing care retirement communities, representatives from hospice and palliative care, community service providers, a DSS director, a local public health director, someone from Medicaid, a geriatrician, two neuro-psychologists, philanthropic partners, and several members of the General Assembly.
The goal was to develop an actionable strategic plan that was evidence-based and consensus-based.
Of the many recommendations, which ones rise to the top for you?
Under “Raising Awareness,” one recommendation is to establish a collective impact partnership to develop “dementia-capable” communities. Minnesota has about 40 or 45 of these collective impact efforts.
The idea is to help local communities work together to create an environment where people with dementia can be cared for, be safe, have transportation, and have access to critical services. The challenge for us is to generate the interest and enthusiasm. The challenge for the community is to identify the human and capital resources to carry it out.
How many communities will there be?
We’re hoping to have about three pilot projects over the next few years, and they’ll share their learnings with other communities. For us to think of this as successful in five years, we’ll want to see work developing in 10 or 20 or even 30 communities.
Which other recommendations would you like to highlight?
Another important one is increasing access to medical and community services by improving transportation. The task force recommended forming a workgroup to collaborate on transportation issues.
How did the task force address respite care?
One recommendation focused on ensuring adequate funding for family caregiver support services through NC Project C.A.R.E., which stands for Caregiver Alternatives to Running on Empty.
It was a successful program that really helped people stay in their homes, but in 2010, during tight budget times, it lost $500,000 in funding. The General Assembly has reinstated funding, and increased it to $550,000 a year.
Why is respite care critical?
According to estimates from the Alzheimer’s Association, 448,000 North Carolinians provided more than $6 billion in unpaid care for loved ones with dementia in 2014.
Small investments in respite care and other kinds of home- and community-based services can help preserve families, communities and the future of our state's economy. One study shows that $100 of respite care can delay institutionalization by an average of a week. A week in a nursing home costs $1,500 roughly – and if the person is a Medicaid beneficiary, the state is paying about $500 of that $1,500.
Also, we can't build nursing homes fast enough to take care of this population over the next 15 years. Since Medicaid pays for the majority of those nursing home beds, which are unbelievably expensive, our state budget can't handle that surge either.
What are the next steps?
We presented the plan to the General Assembly on March 8, 2016. As a result, the Joint Health and Human Services Oversight Committee recommended action on several task force proposals for the 2016 short session and Governor McCrory included additional funding for several of the recommendations in his proposed budget.
So far, the legislature has approved about $2.25 million in recurring appropriations, along with $5.3 million in transportation appropriations that are related to the work of the task force.
What's the biggest takeaway that you want to share about this work?
Making small investments in allowing people to stay in their homes and communities is going to pay incredible dividends and is necessary to our health and economic vitality over the next generation.
Learn more about the Task Force on Alzheimer’s Disease and Related Dementias
Lin B. Hollowell III
Director of Health Care