New Alzheimer’s Association Report Finds Growing Caregiver Burden in North Carolina

– For the first time, report shows data on caregiver health and well-being in North Carolina –

The Alzheimer’s Association 2023 Alzheimer’s Disease Facts and Figures report provides an in-depth look at the latest national and North Carolina statistics on Alzheimer’s disease prevalence, mortality, caregiving, dementia care workforce and costs of care. According to the report, there are 6.7 million people 65 and older living with Alzheimer’s dementia in the United States, including 180,000 in North Carolina. That number is estimated to grow to as many as 210,000 by 2025.

“This year’s Facts and Figures report underscores the considerable physical and emotional toll North Carolina caregivers experience when caring for someone living with Alzheimer’s. It clearly underlines the need for caregiver support in North Carolina. The Alzheimer’s Association offers free local support throughout our state including support groups, education as well as the Association’s 24/7 Helpline. This support can be a lifeline to caregivers.”

Katherine L. Lambert, Alzheimer’s Association Regional Leader for the NC, SC, and GA Chapters

The Alzheimer’s Association Facts and Figures report finds the burden on North Carolina Alzheimer’s and dementia caregivers is growing. The new report released today shows there were an estimated 369,000 dementia family caregivers across the state in 2022, providing 533 million hours of unpaid care valued at $8 billion.

Here are the biggest takeaways from this year’s report for North Carolina:

Caregivers face significant challenges

North Carolina caregivers and those across the country face significant emotional, physical and health-related challenges as result of caregiving as well, including:

• Dementia caregivers report higher rates of chronic conditions, including stroke, heart disease, diabetes, and cancer compared to caregivers of people without dementia or non-caregivers. In North Carolina, 58.8% of caregivers reported at least one chronic condition.
• The prevalence of depression is higher among dementia caregivers when compared to caregivers for other conditions. In North Carolina, 41% caregivers reported depression.
• Seventy-four percent of dementia caregivers report they are “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver. In North Carolina, 18.1% report frequent poor physical health.
• Across the country, 59% of dementia caregivers report high to very high emotional stress due to caregiving and 38% report high to very high physical stress due to caregiving.

Direct care workforce shortage looming

Shortages are looming for direct care workers in North Carolina and across the country. Direct care workers, including nurse aides, nursing assistants, home health aides and personal care aides play a vital role in caring for people living with Alzheimer’s and other dementia in private homes, community-based settings such as adult day services and residential care, skilled nursing homes and other settings.

• According to the report, an estimated 1.2 million additional direct care workers will be needed between 2020 and 2030 — more new workers than in any other single occupation in the United States.
• In 2020, there were an estimated 65,150 home health and personal care aids in North Carolina, according to the report. By 2030, 82,070 will be needed — a 26% increase.

Capacity issue for medical specialty workforce

The capacity of the medical specialty workforce is essential for diagnosis, treatment and ongoing care for people living with Alzheimer’s and all other dementia. The shortage of dementia care specialists could soon become a crisis for Alzheimer’s disease care especially with the recent Food and Drug Administration (FDA) approval of new treatments targeting the underlying biology of Alzheimer’s disease, which is reframing the health care landscape for people with early-stage Alzheimer’s or MCI due to Alzheimer’s disease.

• According to the report, most states, including North Carolina will have to nearly triple the number of geriatricians to effectively care for those 65 and older who are projected to have Alzheimer’s dementia in 2050.
• In 2021, there were only 158 geriatricians in North Carolina. By 2050, 535 geriatricians will be needed to care for residents across the state living with Alzheimer’s dementia.

The costs are unsustainable

In 2022, more than 11 million caregivers of people with Alzheimer’s disease or other dementias provided an estimated 18 billion hours of unpaid care, a contribution to the nation valued at more than $339.5 billion.

• Here in North Carolina the Medicaid costs of caring for people with Alzheimer’s are estimated at $1.3 billion.
• By 2025, these costs are projected to increase by 22%.
• In 2022, the Medicare spending in North Carolina on people with dementia is $26,019 for each person.

---

Special Report Finds Sooner Discussion of Cognitive Concerns Needed

An accompanying special report, The Patient Journey In an Era of New Treatments, offers new insights from patients and primary care physicians (PCPs) on current barriers that impede earlier discussion of cognitive concerns. Focus groups reveal many people with subjective cognitive decline (self-reported memory concerns) do not discuss cognitive symptoms with their health care providers. Previous special reports have indicated many people believe their experiences are related to normal aging, rather than a potential diagnosable medical condition. Some of the reasons for not discussing include:

• Patients lack knowledge and awareness of cognitive health issues.
• Patients have great tolerance for their symptoms, leading them to delay discussions with their physicians.
• Patients are waiting for the problem to have a meaningful impact on their life first, suggesting that the problem is serious and not normal aging.

Different racial and ethnic groups express concerns about care delivery and specific barriers to care which influences their interactions with health care providers. For example, Black Americans, American Indians, Alaska Natives and Hispanic Spanish-speaking Americans strongly preferred holistic approaches to treatment that minimize the use of biomedical interventions or prescription medication.

Black Americans, American Indians and Alaska Natives indicated the presence of historical racism in the medical field, making many individuals feel that they do not receive adequate, culturally competent care. Some participants also indicated that their community’s mistrust of doctors and/or Western medicine prevents them from talking to a doctor.

In addition to reluctance from individuals, the report revealed PCPs are not proactively asking their patients about cognitive issues either. 

• PCPs shared they hesitate to initiate conversations about cognitive decline and will wait until family members bring it to their attention.
• PCPs expressed concern about how people will be cared for if an assessment uncovers Alzheimer’s disease or other dementia in light of specialist shortages and few referral options.
• Importantly, PCPs view family members as influential and critical partners in care, often relying on them to initiate conversations about memory and thinking problems they observe in their loved ones, making the role of caregivers ever more significant.

---

Full text of the Alzheimer’s Association 2023 Alzheimer’s Disease Facts and Figures report, including the accompanying special report, “The Patient Journey In an Era of New Treatments,” can be viewed at alz.org/facts.

About 2023 Alzheimer’s Disease Facts and Figures: 

The Alzheimer’s Association 2023 Alzheimer’s Disease Facts and Figures report is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the report has become the preeminent source covering the broad spectrum of Alzheimer’s issues. The Facts and Figures report is an official publication of the Alzheimer’s Association.