epocrates

Alzheimer’s Association report reveals top stressors for caregivers, health care workers

April 4, 2024

In 2023, an estimated 11.5 million family and other caregivers of people living with Alzheimer's disease (AD) or other dementias provided an estimated 18.4 billion hours of unpaid help. With the prevalence of AD expected to increase, the need for caregiver support is crucial. The latest data from the Alzheimer’s Association underscores the importance of improving dementia care navigation and support. The recently released Alzheimer’s Disease Facts and Figures reports that both dementia caregivers and health care workers (HCWs) struggle with navigating dementia care within the U.S. health care system. The lack of support can result in considerable ramifications for both caregivers and individuals living with dementia, including delaying timely detection and diagnosis of dementia; compromising care transitions between health providers and setting; and causing caregivers to miss opportunities for disease education that can help reduce caregiver stress.

Methods

The Alzheimer’s Association surveyed 1,533 current or recent unpaid caregivers for a relative or friend aged 50 or older experiencing some form of dementia. The sample included White (n=629), Hispanic (n=309), Black (n=308), Asian (n=206), and Native American (n=24) caregivers and caregivers who identified as belonging in other ethnic or racial groups (n=57). Respondents were recruited via non-probability online panels used exclusively for research, with full population screening data weighted to match U.S. Census data to ensure accurate representation of the caregiving population. In addition, a total of 1,204 HCWs were also surveyed, including both medical professionals (n=708) and nonmedical professionals (n=503).

Key findings

1. The U.S. healthcare system is not effectively helping HCWs, patients, and their families navigate dementia care.

Nearly half of surveyed HCWs say that their organizations do not have a clearly defined process for managing care coordination and clinical pathways for patients with mild cognitive impairment (MCI), AD, or other forms of dementia. The vast majority of caregivers (70%) find the coordination of care stressful and 66% report having difficulty finding resources and support for their needs. Most dementia caregivers (97%) say that they would find navigation services helpful. Services cited most often by caregivers include a 24/7 helpline (36%), help with coordinating care and communication between different specialists (34%), and getting help in understanding their care recipient's condition (34%).

2. Dementia caregiving is a demanding job that can last for years, and a great deal of a caregiver’s time is spent attempting to coordinate care.

Caregivers for people with AD and other dementia provide approximately 26 hours of care per week. Nearly 50% indicated that they’d been providing care for one to three years and 33% reported spending four or more years as a caregiver. Black caregivers reported the most time spent providing care (30 hours per week), followed by White (27 hours), Hispanic (25 hours), and Asian (19 hours) caregivers. Because people with dementia see an average of four different doctors every year, scheduling and managing care visits are a time-consuming process. More than 33% of caregivers reported performing these duties at least once daily.

3. Worries about costs and coordinating care are the top stressors.

The most frequently cited worry for dementia caregivers is cost (42% of caregivers), followed by the stress of coordinating with multiple doctors (36%), securing appointments (35%), getting help taking a break (35%), and finding appropriate doctors (32%). Asian caregivers report worries about costs and expenses (51%) as the top stressor, more so than other groups (Black caregivers, 37%; Hispanic caregivers, 42%; White caregivers, 41%). Asian caregivers also are more likely to report stress in finding appropriate doctors (41%) and understanding recommended treatments (30%) than other groups. Finding respite care is the top stressor for Black caregivers (39%), and concerns about cost and expenses are top of mind for Hispanic caregivers.

Not surprisingly, dementia caregivers surveyed would welcome navigator support, with 85% of caregivers indicating that having access to a care navigator would influence their choice of a dementia health care provider for the person they care for.

4. Cultural competency is fundamental for dementia care navigation.

Caregivers for people living with dementia stressed that it is essential for care navigators to understand their ethnic or racial background. Significantly, 90% of Asian, Black, and Hispanic caregivers felt it crucial for navigators to be aware of the background of the person they are caring for. In contrast, White caregivers placed less importance on this shared experience. Confidence in the cultural competency of the person providing navigation assistance was lower for all other groups, and lowest for Asian caregivers. HCWs surveyed echoed that empathy for racial, ethnic, and cultural backgrounds and experiences is key. They overwhelmingly agreed that effective dementia care navigation requires cultural competence, with 99% saying that it is important for navigators to understand.

5. Training in dementia care navigation for HCWs is lacking and not standardized.

The majority of HCWs providing care navigation (75%) indicated that they received no formal training in dementia care navigation. Those who did receive training were predominantly nonmedical professionals, receiving a median of 30 hours of formal training. Medical professionals who were trained received a median of 20 hours of formal training. Nine in 10 health care workers offering navigation support (92%) say social workers, community health workers or home health aides are best suited to help people living with dementia and their caregivers navigate health care.

Solving the complexity of dementia care navigation

The Special Report survey results brought to light three themes to advance dementia care navigation efforts: 1) formalize the dementia care navigator role and increase navigator proficiency in dementia care; 2) scale and expand access to dementia care navigation programs; and 3) create direct lines to dementia care navigators.

To address the problems cited in the report, the Centers for Medicare & Medicaid Services (CMS) will launch an eight-year pilot program in July to improve dementia care management. The Guiding an Improved Dementia Experience (GUIDE) model will work with participating health systems and providers to deliver supportive services to people living with dementia, including access to a care navigator. Three primary aims of GUIDE are to improve quality of life for people living with dementia, reduce strain on their unpaid caregivers and enable people living with dementia to remain in their homes and communities.

Source:

Alzheimer’s Association. (2024). Alzheimer’s Disease Facts and Figures and Special Report, Mapping a Better Future for Dementia Care Navigation. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf