DES MOINES — 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. healthcare system. The new report estimates that 6.9 million people age 65 and older in the U.S. are living with Alzheimer’s dementia and over 11 million loved ones are providing care. In Iowa, over 62,000 people are living with the disease, and there are nearly 100,000 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 family caregivers provided 125 million hours of unpaid care valued at $2.284 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 nonclinical 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.
• 2 in 3 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 healthcare professional about challenges finding their way through the healthcare 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 healthcare workers surveyed believe that the U.S. healthcare 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.