Alzheimer’s Association Report Finds Lack of Care Navigation Support and Shortage of Direct Care Workers

The Alzheimer’s Association released its 2024 Alzheimer’s Disease Facts and Figures report in March. The special report, Mapping a Better Future for Dementia Care Navigation, explores the challenges that dementia caregivers and healthcare workers face in navigating dementia care. The report includes some surprising data and highlights the need for more care navigation services nationwide.

Key Findings from the 2024 Alzheimer’s Disease Facts and Figures Report

One of the most notable findings from the report is just how stressful and difficult navigating Alzheimer’s care is. Seventy percent of caregivers report that coordinating care is difficult, and 66% of caregivers have difficulty finding resources and support for their needs. Caregivers identified the top five stressors as:

1. Cost.
2. Coordinating with multiple doctors.
3. Securing appointments.
4. Getting help taking a break.
5. Finding appropriate doctors.

Additionally, 97% of dementia caregivers noted that they would find care navigation services helpful. Caregivers identified a 24/7 helpline, help with coordinating care between different specialists, and getting help in understanding their care recipient’s condition as being valuable navigation services.

Of the healthcare workers surveyed, 60% believe that the U.S. healthcare system is not effectively helping patients and families navigate dementia care.

Additionally, the report identifies a significant direct care worker shortage. Multiple factors, from high turnover rates and challenging recruitment and retention rates, contribute to the problem. According to the report, from 2012 to 2022, the number of direct care workers increased from 3.2 million to 4.8 million, which is driven by growing long-term care demand. However, more than 1 million additional direct care workers will be needed from 2021 to 2031 to care for the increasing population of people living with dementia. That is the largest worker gap of any single occupation in the United States.

Exploring the Direct Care Worker Shortage

Sam Fazio, Ph.D., senior director of Quality Care and Psychosocial Research at the Alzheimer’s Association

Sam Fazio, Ph.D., is senior director of Quality Care and Psychosocial Research at the Alzheimer’s Association. He explains that direct care workers play a key role in caring for people living with Alzheimer’s and other dementia in settings such as private homes, adult day services and residential care, skilled nursing homes, and more.

“This projected growth in the direct care workforce is being seen across the country,” he says. “Double-digit percentage increases in the number of home health and personal care aides will be needed between 2020 and 2030 to meet demand in every state except Maine. Twenty-one states will need to see a 30% to 40% increase in the size of this workforce, while in two states (Arizona and Nevada) the workforce will need to increase more than 50%.”

While more direct care workers are needed in the coming years, the long-term care industry is already struggling with staff shortages. Fazio notes that turnover rates are estimated at 77% annually for direct care workers providing home care, and 99% for nursing assistants in nursing homes.

He explains that several efforts are underway to help bridge this gap. State governments are creating direct care workforce development programs, standardizing regulatory requirements for direct care work, and addressing wage issues to promote staff retention. “The federal government and states are taking unprecedented action to improve job quality and bolster this workforce, particularly through Medicaid, including by overhauling training and credentialing systems, designing new career development opportunities, implementing reimbursement rate increases tied to increased compensation, developing new recruitment campaigns and pipeline programs,” Fazio says.

Challenges and Improvements in Alzheimer’s Care Navigation

Fazio explains that dementia care navigation is a model of care that connects people living with dementia and their caregivers to a range of clinical and community-based support and services. “Studies have shown that effective dementia care navigation can improve health outcomes, reduce costs and lessen caregiver stress,” he says.

However, dementia care navigation programs aren’t yet widespread. Fazio notes that the current reimbursement systems, which don’t incentivize dementia care, are one of the greatest barriers. “These healthcare workers strongly believe that alternative payment models are important in providing future care coordination for people diagnosed with dementia. Without new payment models that reward care coordination – many providers are ill equipped to provide robust dementia care navigation support and services,” he says.

In an effort to bolster dementia care management, the Centers for Medicare & Medicaid Services (CMS) is launching an eight-year pilot program. Set to begin later this summer, the Guiding an Improved Dementia Experience (GUIDE) model will work with participating health systems and providers. “The GUIDE model will test an alternative payment model to incentivize health systems that provide dementia care navigation,” says Fazio. “The Alzheimer’s Association believes there will be opportunities to build on this model – and other successful models currently in place at larger healthcare systems – to implement dementia care navigation in a variety of practice settings.”

While CMS hasn’t yet indicated how many providers will participate in GUIDE, the initial rollout this year will feature established dementia care programs, with new dementia care programs beginning participation in July 2025.

“A new Alzheimer’s Association partnership has been selected for participation in GUIDE. The Dementia Care Navigation Service (DCNS), powered by Rippl and the Alzheimer’s Association will provide comprehensive, personalized support for people living with dementia and their caregivers through their dementia journey,” explains Fazio. “This new navigation service offers patients and caregivers 24/7 access, care coordination, comprehensive planning, medication management, and critical support and community education resources. DCNS will be available to support individual dementia caregivers and work with providers and health systems to deliver community-based services, respite and other support services that are often challenging to deliver in the clinical setting.”

The Future of Alzheimer’s and Dementia Care

The report reveals key information about challenges in navigating Alzheimer’s and dementia care. With caregivers and family members facing obstacles in coordinating care and getting support, memory care programs can work to help fill that need and play a vital role in connecting and supporting caregivers and those living with Alzheimer’s.

The need for more care navigation support is only going to increase. An estimated 6.9 million Americans age 65 and up are living with Alzheimer’s today, but the report predicts that number will grow to 12.7 million by 2050. “As the number of individuals living with Alzheimer’s and other dementias 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,” says Fazio. “GUIDE offers a pivotal opportunity for improving dementia care in this country and giving individuals and families the help they want and need. The Alzheimer’s Association looks forward to playing an instrumental role in this work.”

Paige Cerulli

Paige Cerulli is a contributing writer to i Advance Senior Care.