DAVENPORT, IOWA (March 20, 2024) — 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 US health-care system. The new report estimates that 6.9 million people age 65 and older in the US are living with Alzheimer’s dementia and over 11 million loved ones are providing care. In Iowa and Illinois combined, over 310,000 people are living with the disease, and there are over 410,000 caregivers.
This year the cost of caring for people living with Alzheimer’s and other dementias is projected to reach $360 billion — a $15 billion increase from a year ago. This does not include unpaid care provided by family caregivers and friends. Last year in Iowa and Illinois combined, family caregivers provided 605 million hours of unpaid care valued at over $12 billion.
An accompanying special report, “Mapping a Better Future for Dementia Care Navigation, provides a comprehensive look into dementia care navigation by surveying dementia caregivers and health-care workers on their experiences, challenges, awareness, and perceptions of care navigation in dementia care. Dementia-care navigation provides clinical and non-clinical support to people living with dementia and their caregivers. A dementia-care navigation program can include support to address barriers related to medical, legal, financial, and emotional stress and questions, helping finding and accessing medical care and local resources and more.
Key findings:
- 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.
- Two in three caregivers (66%) also have difficulty finding resources and support for their needs.
- The top five stressors for caregivers are:
- Cost (reported by 42% of caregivers)
- Coordinating with multiple doctors (36%)
- Securing appointments (35%)
- Getting help taking a break (35%)
- Finding appropriate doctors (32%)
- Despite coordinating care and scheduling being top stressors for caregivers, only half of the caregivers surveyed (51%) have ever talked with a health-care professional about challenges finding their way through the health-care system or asked for help with dementia care.
- Black and Hispanic caregivers report managing care on a daily basis (43% and 45%, respectively) compared to White caregivers (31%).
- The vast majority of dementia caregivers (97%) say that they would find navigation services helpful. Services cited most often by caregivers include:
- A 24/7 helpline (36%)
- Help with coordinating care and communication between different specialists (34%)
- Getting help in understanding their care recipient’s condition (34%)
- 60% of health-care workers surveyed believe that the US 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 Alzheimer’s Association is involved in efforts across the nation to implement and improve dementia care navigation programs so families facing this devastating disease aren’t burdened with additional stress from being unable to easily navigate care. In Iowa, the Alzheimer’s Association Iowa Chapter is advocating state lawmakers for funding for a Dementia Service Specialist program which would help families with many of the dementia care navigation needs including finding doctors and local resources and support.
Find 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.
About the Alzheimer’s Association
The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support, and research. Our mission is to lead 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®. Visit alz.org or call 800.272.3900.
