• Posted March 20, 2024

Nearly 7 Million Americans Have Alzheimer's, and Caregivers Are Stressed

Nearly 7 million American seniors are living with Alzheimer's dementia, placing a huge strain on both personal caregivers and the U.S. health care system, according to a new Alzheimer's Association report.

The cost of caring for seniors with Alzheimer's is projected to reach $360 billion this year, up $15 billion from just a year ago, says the association's 2024 Alzheimer's Disease Facts and Figures report.

At the same time, coordinating the health care of people with dementia has become "a complex maze composed of primary care providers, specialists, social services, medication management and caregiver support,"Sam Fazio, senior director of psychosocial research and quality care at the Alzheimer's Association, said in a news release.

Seven of 10 caregivers report that coordinating Alzheimer's care is stressful, and 53% said navigating health care is difficult, the association's report found.

"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,"Fazio said.

In all, 6.9 million people 65 and older in the U.S. are living with Alzheimer's disease, the report says.

About 11.5 million family members and other caregivers provided an estimated 18.4 billion hours of unpaid help for people with Alzheimer's in 2023, the report says.

On average, that's nearly 31 hours of care per caregiver each week, or 1,612 hours a year, the report says.

These hours are spent managing a disease that essentially upends the lives of both patient and caregiver.

A caregiver might find themselves helping with daily personal care like dressing or washing, while also scheduling appointments with health care providers, attending doctor's visits, and reaching out for support services like adult day care or meal delivery.

Two in three caregivers (66%) struggle to find resources and support, the report says.

The top five sources of stress for caregivers are:

• Cost (42%).

• Coordinating with multiple doctors (36%).

• Securing appointments (35%).

• Getting help taking a break (35%).

• Finding appropriate doctors (32%).

Experts say care navigation services can provide relief. These services help people weave their way though the health care system and the network of support services available to them.

The concept of care navigation originated in cancer clinics in the 1990s, to address the complexities faced by cancer patients in managing their care, the report says. It's since expanded to other chronic diseases, including kidney disease and diabetes.

The vast majority of dementia caregivers (97%) say they would find a navigation service helpful. But only half (51%) have talked with a health care professional about the challenges they face or sought help with dementia care, the report says.

Caregivers say a 24/7 helpline, assistance coordinating care from various providers and help understanding their patient's condition would be most helpful. About one-third of caregivers cited such services as needed. 

Caregivers aren't wrong in feeling overwhelmed, health care workers say.

About 60% of health care workers say the U.S. health care system is not effectively helping people navigate dementia care, the report says.

Further, nearly half (46%) say their own organization lacks a clearly defined process for coordinating care for patients with dementia and Alzheimer's disease.

Roadblocks or detours encountered by people lost in the health care system can have important ramifications for people with dementia, the report says, including:

• Delaying timely detection, diagnosis and treatment of early-stage problems with brain function.

• Interfering with comprehensive dementia care by making it difficult to coordinate between different health providers and settings.

• Causing caregivers to miss out on important support services like disease education programs and respite care.

In July, the Centers for Medicare and Medicaid Services is preparing to launch an eight-year pilot program for dementia care management, the Alzheimer's Association says.

The Guiding an Improved Dementia Experience (GUIDE) model will provide access to a care navigator to help caregivers manage both health care and supportive services for their patient.

"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."

More information

The University of California-San Francisco has more about Alzheimer's care navigation.

SOURCE: Alzheimer's Association, news release, March 20, 2024