The Alzheimer’s Association 2023 Alzheimer’s Disease Facts and Figures report reveals that the responsibility on Alzheimer’s and dementia caregivers continues to grow. The report provides an in-depth look at the latest national and state-by-state statistics on Alzheimer’s disease prevalence, mortality, caregiving, dementia care workforce, and costs of care.
According to the report, more than 6.7 million Americans aged 65 and older are living with Alzheimer’s, including 110,000 in Maryland. An estimated 11.5 million Americans are unpaid family caregivers, including 247,000 in Maryland. Unpaid caregivers in the U.S provided over 18 billion hours of unpaid care last year, valued at $339.5 billion. Unpaid caregivers in Maryland provided 405 million hours of unpaid care last year, valued at $8.14 billion.
The new report also reveals that more than 11 million caregivers – including 247,000 in Maryland – face significant emotional, physical, and health-related challenges as a result of caregiving as well, including high levels of stress and concerns about their own health.
The report finds a shortage looming for direct care workers across the country, including nurse aides, nursing assistants, home health aides, and personal care aides who play a vital role in caring for people living with Alzheimer’s and other dementia in private homes, community-based settings, skilled nursing homes, and other settings.
According to the report, an estimated 1.2 million additional direct care workers will be needed between 2020 and 2030 – more new workers than in any other single occupation in the United States. Maryland currently has 42,560 direct care workers. That number will need to increase 33.4% to 56,790 by 2030 to meet the growing demands for Alzheimer’s and dementia care.
The report also examines the capacity of the medical specialty workforce essential for diagnosis, treatment, and ongoing care for people living with Alzheimer’s and all other dementia. The shortage of dementia care specialists could soon become a crisis for Alzheimer’s disease care, especially with the recent FDA approval of new treatments targeting the underlying biology of Alzheimer’s disease, which is reframing the healthcare landscape for people with early-stage Alzheimer’s or MCI due to Alzheimer’s disease.
The accompanying special report, The Patient Journey in an Era of New Treatments, offers new insights from patients and primary care physicians (PCPs) on current barriers that impede earlier discussion of cognitive concerns. Focus groups reveal many people with subjective cognitive decline (self-reported memory concerns) do not discuss cognitive symptoms with their healthcare providers.
Even with progress in the development of new medicines that target the underlying biology and aim to slow the progression of Alzheimer’s disease, access to the FDA-approved treatments for Alzheimer’s is being severely hampered. The unprecedented decision by the Centers for Medicare & Medicaid Services (CMS) not to cover payment for the drugs without patients enrolling in additional clinical trials continues to keep patients from accessing treatments.
Currently, there are more than 140 unique therapies being tested in clinical trials that target multiple aspects of Alzheimer’s biology. As the world’s largest non-profit funder of Alzheimer’s research, the Alzheimer’s Association is currently investing more than $320 million in over 1,000 active best-of-field projects in 54 countries, spanning six continents.
“This year’s Facts and Figures report underscores the considerable physical and emotional toll caregivers experience when caring for someone living with Alzheimer’s,” said Kate Rooper, president and CEO, Alzheimer’s Association National Capital Area Chapter. “It clearly underlines the need for caregiver support in our community. The Alzheimer’s Association offers free local support throughout our state, including support groups, education, as well as the Association’s 24/7 Helpline. This support can be a lifeline to caregivers.”
The Alzheimer Association offers a 24/7 Helpline (800.272.3900) available 365 days a year. Through this free service, specialists and master’s-level clinicians offer confidential support and information to people living with dementia, caregivers, families, and the public.
The report emphasizes the importance of spurring conversations with family members and healthcare providers about cognitive concerns. Outreach and educational messages may empower individuals to seek help when they become concerned about cognitive issues. Community-based, participatory educational campaigns are another way to reach people who may not believe their problems are serious enough to warrant a medical visit. A dialogue between individuals with cognitive concerns, their families, and their physicians is a crucial first step on a journey toward understanding the magnitude of the issue.
“The report sounds an important alarm on the urgent need to attract and retain these essential front-line care workers,” said Rooper. “These valuable professionals are not only providing direct care to people living with Alzheimer’s and other dementia, but they are vital in supporting family caregivers, particularly for those providing in-home care.”
The Alzheimer’s Association continues to advocate for greater investment in dementia research and an increased commitment to developing treatments for Alzheimer’s and other dementias. With the continued growth of the aging population and the rise in Alzheimer’s cases, the need for such treatments has never been greater.
In conclusion, the 2023 Alzheimer’s Disease Facts and Figures report provides a stark reminder of the growing burden on Alzheimer’s and dementia caregivers, the need for greater support and resources for caregivers, and the urgent need for investment in research and treatment development. The report also highlights the importance of early discussions about cognitive concerns and the need to attract and retain essential front-line care workers. By addressing these issues, we can work toward improving the quality of life for people living with Alzheimer’s and their families and ultimately find a cure for this devastating disease.