It’s not just family caregivers who face challenges navigating dementia care — the nation’s healthcare workers also said they had difficulties providing care coordination through a complex healthcare maze, according to a new report from the Alzheimer’s Association.
The 2024 Alzheimer’s Disease Facts and Figures report, released today, states that almost 7 million US older adults are living with Alzheimer’s dementia, and an estimated 200,000 Americans aged fewer than 65 years have early-onset Alzheimer’s disease.
Among residents of residential care facilities, including assisted living communities, 42% had a diagnosis of Alzheimer’s or other dementias in 2020 — up from 34% in 2016. Only 21% of assisted living and other residential care communities, however, reported having a dementia special care unit.
As the number of cases climb, so do the costs.
Alzheimer’s is one of the costliest conditions in the nation, according to the Alzheimer’s Association. Dementia care costs are projected to reach $360 billion this year, a $15 million increase (4.4% rise) over a year ago.
The median monthly cost of care in an assisted living community was $4,500 in 2021, with an average annual increase of 4.4% between 2017 and 2021. Almost two-thirds of adults aged 50 or more years reported feeling anxious about being able to afford assisted living or nursing home care if they need it.
At the same time, the shortage of dementia care specialists and direct care workers threatens to compromise care for people living with dementia, according to the report.
The Alzheimer’s Association noted that the COVID-19 pandemic had a “significant and enduring impact” on the healthcare workforce, which dropped 8% at the beginning of the global health crisis. Employment levels in long-term care settings remain far below pre-pandemic levels — as of October, employment was 2.3% lower in assisted living and continuing care retirement communities and 10% lower in nursing homes compared to February 2020.
Between 2012 and 2022, the number of direct care workers increased from 3.2 million to 4.8 million, but experts say more than 1 million additional paid caregivers will be needed to meet future care demands for those living with dementia between 2021 and 2031.
Difficulty finding help
This year’s special report, “Mapping a Better Future for Dementia Care Navigation,” highlights the challenges both unpaid caregivers and paid healthcare workers encounter when trying to navigate care coordination for someone living with Alzheimer’s or another form of dementia.
In 2023, 11.5 million unpaid caregivers provided approximately 18.4 billion hours of care. The majority of those caregivers (70%) said coordinating care is stressful and that navigating healthcare was difficult (53%). Two in three caregivers (66%) also reported difficult finding resources and support for their needs.
Most healthcare workers surveyed (60%) said the US healthcare system is not effective in helping patients and their families navigate dementia care. Almost half (46%) said that their organizations did not have a clearly defined process for care coordination or clinical pathways for people with mild cognitive impairment, Alzheimer’s disease or another form of dementia. And 75% of healthcare professionals providing dementia care navigation services said they had no formal training in that area.
Dementia care training, in general, was found to be lacking among the direct care workforce. A 2015 review noted that 44 states and Washington, DC, had dementia care training standards for assisted living staff members, but those requirements only applied to special memory care communities or dementia units in 14 of those states.
Catalyst for change?
Those roadblocks can delay early diagnosis and treatment, compromise care transitions and create missed opportunities for caregiver education and connections, according to the report.
“Dementia healthcare is a complex maze composed of primary care providers, specialist, social services, medication management and caregiver support,” Sam Fazio, PhD, Alzheimer’s Association senior director of psychosocial research and quality care, said in a statement. “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.”
Seventy percent of healthcare workers surveyed called out restrictions in current payment models as a barrier to dementia care, and 87% said that developing alternative payment models is important in providing future care coordination for people in whom dementia has been diagnosed.
In July, the Centers for Medicare & Medicaid Services will launch an eight-year pilot program of the Guiding Improvement Dementia Experience (GUIDE) Model, a dementia care management program that will test an alternative payment for family caregivers while expanding care delivery options to allow people living with dementia to age in their preferred setting.
“There is growing momentum in this country to enhance dementia care navigation,” Fazio said. “Dementia care navigation programs have shown they can be a huge benefit to people living with dementia and their caregivers. Unfortunately, these programs are not widespread across the country. We hope this report will be a catalyst for change.”
