People caring for those with dementia — who include family members and healthcare workers — say it’s hard to navigate the disease within the US health system, according to the Alzheimer’s Association 2024 Alzheimer’s Disease Facts and Figures report published Wednesday.
About 6.9 million people who are 65 and older live with the disease, and the cost of care is expected to hit $360 billion — up $15 billion from a year prior, according to the report, which gives state-by-state figures on Alzheimer’s disease prevalence, costs of care, mortality, caregiving and more.
In 2023, there were 11.5 million family members and caregivers who had loved ones with Alzhiemer’s disease or a form of dementia. The caregivers provided about 18.4 billion hours of unpaid care to those people. Each caregiver was donating about 31 hours of unpaid care to a loved one weekly — that’s about 1,612 hours per year.
Coordinating care was stressful for 70% of the caregivers. Of them, 53% said navigating the healthcare system was hard, and 66% had a difficult time finding support for their individual needs.
Among the biggest stressors for caregivers include costs for care, working with multiple doctors, getting appointments, finding time to get a break, and getting access to appropriate clinicians.
Care navigation is typically part of the process at a medical practice, but 51% of the caregivers said they leaned on a healthcare professional about getting help. That said, 97% said they would find the services helpful.
Professional caregivers also find it difficult to navigate the care system. Most healthcare workers surveyed (60%) said the US healthcare system is not effective in helping patients and their families navigate dementia care. Nearly half (46%) said their organizations did not have a clearly defined process for care coordination or clinical pathways for patients with mild cognitive impairment, Alzheimer’s disease or other dementia. And 75% of healthcare professionals providing dementia care navigation services said they had no formal training in that area.
Home health providers could provide a solution, the report said, noting that community health workers and home health aides are “best suited” to help people living with dementia and their family caregivers.
“Dementia healthcare is a complex maze composed of primary care providers, specialists, social services, medication management and caregiver support,” Sam Fazio, PhD, senior director, psychosocial research and quality care at the Alzheimer’s Association. “As the number of individuals living with Alzheimer’s continues to grow, ensuring patients, their caregivers and families have a clear understanding of how to navigate dementia care resources is critical to improving health outcomes.”
The Centers for Medicare & Medicaid Services is set to kick off an eight-year pilot program this summer called the Guiding an Improved Dementia Experience (GUIDE). The model aims to provide more support for people living with dementia including care navigators.
