The burden of Alzheimer’s and other dementias weighs heavily on those living with dementia and their caregivers, according to a new report — and more care navigation support is needed in both clinical and nonclinical settings.
The
Alzheimer’s Association 2024 Alzheimer’s Disease Facts and Figures report reveals that both dementia caregivers and health care workers report difficulties in navigating dementia care within the U.S. health care system. The report provides an in-depth look at the latest national and state-level statistics on Alzheimer’s disease prevalence, mortality, caregiving, dementia care workforce and costs of care.
The new report estimates that 6.9 million people age 65 and older in the U.S. are living with Alzheimer’s dementia, including 112,500 South Carolinians. South Carolina ranks eighth in the nation for Alzheimer's mortality rates, and Orangeburg County also ranks eighth in the nation for Alzheimer's prevalence (among counties with a population of 10,000 or more age 65 and older).
According to the new report, 83% of the help provided to older adults in the United States comes from family members, friends or other unpaid caregivers. Nearly half of all caregivers (48%) who provide help to older adults do so for someone with Alzheimer’s or another dementia. Nationwide, there are an estimated 11.5 million caregivers providing unpaid care for people living with Alzheimer’s or another dementia.
Last year, 219,000 family members and friends in South Carolina provided 361 million hours of unpaid care valued at over $5.5 billion.
Dementia caregivers in the Palmetto State also reported significant emotional, physical and health-related challenges as a result of caregiving, including:
- 60% of South Carolina dementia caregivers reported at least one chronic condition.
- 31% reported depression.
- 15% reported frequent poor health.
“Caring for someone living with Alzheimer’s or another dementia is especially demanding,” said Cindy Alewine, Executive Director of the Alzheimer’s Association, South Carolina Chapter. “As disease-related symptoms worsen, caregiving responsibilities intensify. Over time, caregivers can experience increased emotional and physical stress making it more difficult to care for their loved ones.”
An accompanying special report,
“Mapping a Better Future for Dementia Care Navigation, shares survey results from dementia caregivers and health care workers on their experiences, challenges, awareness and perceptions of care navigation in dementia care. Dementia care navigation can provide clinical and nonclinical support to people living with dementia and their caregivers to overcome barriers that compromise care and health outcomes.
Unsurprisingly, a majority of caregivers (70%) report that coordination of care is stressful. More than half of the caregivers surveyed (53%) said that navigating health care was difficult, and 2 in 3 caregivers (66%) also have difficulty finding resources and support for their needs.
In the survey, the top five stressors that caregivers named were:
- Cost (reported by 42% of caregivers).
- Coordinating with multiple doctors (36%).
- Securing appointments (35%)
- Getting help taking a break (35%).
- Finding appropriate doctors (32%).
Many of these concerns are shared by health care workers. In fact 60% of health care workers surveyed believe that the U.S. health care system is not effectively helping patients and their families navigate dementia care. Nearly half (46%) say that their organizations do not have a clearly defined process for care coordination and clinical pathways for patients with mild cognitive impairment (MCI), Alzheimer’s disease or other dementia.
“The big takeaway from this year’s special report is that dementia caregivers want and need help navigating the complex health care system and accessing community-based services,” said Alewine. “Given the added complexities of dementia care, we hope our report will encourage health systems and practices to think more intentionally about the challenges facing dementia caregivers and formalize dementia care navigation programs to help them.”
This issue has also informed the Association’s legislative current legislative initiatives, which aim to increase access to community-based services.
Advocates recently gathered at the South Carolina State House to support of the Department on Aging budget request of $1.1 million to establish a Dementia Care Specialist program with dedicated staff in ten regions across the state. If funded, this unprecedented measure would provide local resources for individuals facing a dementia diagnosis and families navigating dementia care needs.
In 2023, Governor McMaster signed into law the Alzheimer’s State Plan Act, which requires the South Carolina Department Aging to maintain a strategic, evidence-informed plan to address Alzheimer’s and related dementias, with annual reporting on progress presented to the legislature each year and a plan updated required every five years. The current Alzheimer’s State Plan for 2023-2028, published in March 2023, has a special focus on supportive services in the community to bring resources to those caregiving for the person with dementia. Dementia Care Specialists support this goal and the outcomes of sustainable community support for people living with dementia and caregiving for their loved ones.
“Our legislators understand the growing public health crisis that dementia poses for South Carolina, and tremendous steps have been taken in the last year to advance research efforts and to ensure a statewide strategic response,” said Alewine. “The next step is to establish a cost-effective state intervention at the community level to help support individuals and families facing dementia.”
Get additional statistics from the report for Alzheimer’s disease prevalence, mortality, cost of care, caregiving and dementia care workforce. Full text of the
2024 Alzheimer’s Disease Facts and Figures report, including the accompanying special report,
Mapping a Better Future for Dementia Care Navigation, can be viewed at
alz.org/facts.
Alzheimer's Association
The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.