Dementia Care and Caregiver Support Research

For people living with dementia, having a family member available to help reduces the need for paid care

People with worsening dementia increasingly have trouble caring for themselves and need the support of one or more caregivers.

A 2021 NIA-funded study found that women, Black individuals, and people with lower incomes are more likely to have adult children as unpaid caregivers than men , White individuals, and those with higher incomes. Having an adult child lowers the likelihood of a person receiving care in a nursing home. Men, White individuals, and those with higher incomes are more likely to have a spouse available for unpaid care.

The study provided national estimates of the availability of family caregivers that may help experts predict on a large scale whether people with dementia will need paid care. These findings could help determine policies for developing an equitable national caregiving system that considers both paid and unpaid care for people with dementia.

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A significant majority of older adults with dementia and other health conditions still engage in meaningful activities

In 2021, a national survey of older adults not living in nursing homes found that many older adults engage in meaningful activities despite having dementia, depression, or a disability.

The survey showed that:

• 74% of participants with dementia regularly engage in meaningful activities, compared with 84% of participants without dementia.
• 56% of participants with a disability; 68% of those with depression; and 35% with dementia, a disability, and depression reported engaging in meaningful activities.

Encouraging people who have dementia to engage in activities they enjoy, such as reading; socializing with others; or engaging in physical activity, such as walking, may help improve their quality of life.

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Emerging care delivery models may help promote health equity

Accountable care organizations (ACOs) are groups of doctors, hospitals, and other health care providers who come together voluntarily to provide coordinated high-quality care to Medicare patients. Over the past year, NIH-funded research has shed light on disparities in dementia care and models, such as ACOs, to promote health equity:

• ACO-affiliated hospitals have fewer preventable hospitalizations for people with dementia , but Black individuals with Alzheimer’s are less likely to receive care at such facilities than White individuals.
• ACO models of care coordination may help reduce urban/rural disparities. People with dementia living in rural areas have higher rates of preventable emergency department visits than those in urban areas. However, ACO-affiliation is linked with lower rates for both urban and rural hospitals.
• Disparities exist in the shift from nursing homes to community-based long term services and support.The number of Black and Hispanic older adults receiving nursing home care has increased over the past 11 years, while the number of White older adults in nursing homes has declined.

These studies suggest that innovative care delivery and payment models can improve care quality and prevent avoidable health care utilization among high-need, high-cost, and diverse populations with Alzheimer’s and related dementias.

State Medicaid programs could help fill gaps in funding to enable more non-White older adults to receive long-term care at home

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For older adults living with dementia, multiple prescription medications may increase health risks

In 2021, results from NIA-funded research showed that nearly 14% of older adults with dementia who do not live in nursing homes are prescribed three or more medications that affect the central nervous system, including the brain .

Taking a combination of such drugs can increase the risk of falling, breathing issues, and heart problems, and can also affect thinking and memory. A separate NIA-funded study of Midwest nursing home residents with dementia identified small but statistically significant increases in antidepressant and opioid prescriptions issued during the COVID-19 pandemic.

In both of these cases, a better understanding of how these medications are used, their effects, and associated risks could help health care providers and dementia patients make safer, more informed care decisions.

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Difficulty managing medications may be an early predictor of dementia

IN 2021, an NIH-funded study found that having trouble managing medications may be a risk factor for developing dementia. The researchers compared data from people diagnosed with Alzheimer’s or a related dementia with data from those who were not.

The study found that those who were eventually diagnosed with Alzheimer’s were four times more likely to have had trouble managing their medications one to two years prior . The findings suggest that older adults who struggle with this daily task might need a detailed cognitive screening even in the absence of other dementia symptoms.

This approach is especially important for racial and ethnic minorities, who are at higher risk of not receiving a clinical diagnosis of dementia.

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The COVID-19 pandemic has had a considerable impact on dementia patients and their caregivers

The COVID-19 pandemic put enormous economic, social, and psychological strains on the health care system and society at large. In the past year, these NIH-funded research studies have revealed ways in which the early stages of the pandemic affected people living with dementia and their caregivers:

• Soon after the pandemic started, people with cognitive impairment who were over age 60 and lived alone experiencedsignificant distress, including fear, confusion, loneliness, and yearning for former social activities.
• In Virginia, almost 50% of caregivers for people with dementia living in rural areas experienced caregiver burnout. They felt exhausted and overwhelmed within two weeks of the state’s stay-at-home order going into effect. These caregivers also expressed concerns about reductions in the availability of care aides and support from family and friends due to COVID-19.

These studies indicate that dementia patients and their caregivers would likely benefit from having expanded access to home care aides and mental health services, especially during times of increased infectious disease risk and uncertainty.

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