Care and Caregiver Support Studies

Alzheimer’s and related dementias have an enormous impact on family caregivers, long-term care facilities, health care providers, health care systems and infrastructure, and the communities in which we all live.

Although it is difficult to estimate the financial toll of dementia, NIH-supported researchers have estimated that total health care spending for people with dementia at the end of life is far more than for people with heart disease or cancer.

To support people living with dementia, caregivers, and health providers, NIH has made large investments in research to improve the quality of care and care coordination. Already, research efforts have contributed to improvements in the quality of care — as well as in the resulting health, well-being, and quality of life — for those living with dementia. In addition, NIH support has enabled the development of resources designed to help ease burdens on care providers.

As one example of NIH investments to facilitate care research, the National Academies of Sciences, Engineering, and Medicine (NASEM) released “ Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward .” The report is the culmination of a collaboration among NIA, the Agency for Healthcare Research and Quality, and NASEM to develop a comprehensive understanding of the evidence base, for essential care and caregiving interventions for the millions of people living with dementia and their caregivers.

Dementia Collaboratory’s Impact on COVID-19 Research

In 2019, NIH funded the IMbedded Pragmatic Alzheimer’s Disease and AD-Related Dementias Clinical Trials (IMPACT) Collaboratory , which is designed to spur innovation to meet the challenges of the complex care management for people living with Alzheimer’s and related dementias.

Collaboratory researchers are partnering with scientists at other universities with health care and long-term care systems to test care interventions in real-world settings. To date, the collaboratory has supported multiple pilot projects and career development awards for researchers from varied disciplines. Examples of IMPACT-supported projects include:

Working to improve Alzheimer’s and related dementias care management across interdisciplinary teams
Designing mobile apps to help adult day service centers prevent minor health issues from escalating to medical emergencies
Empowering bedside nurses in emergency departments to improve detection of dementia in patients

With its previously established network of partnering health care systems, in 2020, the IMPACT Collaboratory was crucial in helping researchers quickly pivot and effectively respond to the coronavirus pandemic with new studies.

Given its goal of finding new ways to deliver high-quality, evidence-based care to people living with dementias and their caregivers, the collaboratory’s infrastructure was primed and ready to rapidly support the development of and conduct studies to assess the pandemic’s acute impact on older adults, particularly people living with dementia. One outcome was an analysis showing that cognitive impairment is linked to elevated death rates in nursing home residents with COVID-19 .

In response to COVID-19 and its devastating effects on people living with dementia and their families and caregivers, NIA awarded the IMPACT Collaboratory with several supplements , including:

Researchers are supporting the development of data sharing and reporting systems and data infrastructure to monitor the effects of the COVID-19 vaccines administered to frail older adults, including people living with dementia, through two NIA supplemental awards:

These initiatives will provide near real-time insight into the use, effects, and outcomes related to use of COVID-19 vaccines among this population.

Creating resources that help caregivers

NIA develops articles and other materials for caregivers to help them be effective care providers while also taking care of themselves. Many of these materials provide tips specifically for those who provide care to people with Alzheimer’s . Health tips from NIA are based on evidence from research results.

Caregivers can learn how to provide everyday care for someone living with dementia, respond to changes in communication and behavior, and get help when needed. NIA resources include:

Caregiving can be rewarding but exhausting. NIA also offers articles about how caregivers can take care of themselves — physically, mentally, and emotionally. Resources include:

In addition, caregivers can sign up to receive NIA’s updates and resources delivered by email.

Roybal Centers for Translational Research to Improve Health Care for the Aging

The goal of the Edward R. Roybal Centers for Translational Research in the Behavioral and Social Sciences of Aging is the translation and integration of basic behavioral and social research findings into interventions to improve the lives of older adults and the capacity of institutions to adapt to societal aging. The Roybal Centers are structured within the conceptual framework of the multidirectional, translational NIH Stage Model to produce potent and implementable principle-driven behavioral interventions.

This model provides structure in six stages for how researchers develop behavioral interventions, from basic research through testing and dissemination. The purpose of the stages is to create interventions that are highly effective at improving health and well-being.

Of the 15 currently funded centers, four are a part of the Roybal Centers for Translational Research on Dementia Care Provider Support . These are focused on:

Transforming residential palliative care for persons with dementia
Using technologies to improve care support intervention development
Decreasing care provider loneliness and isolation
Strengthening informal caregiving mastery

Dementia-related COVID-19 care and caregiving projects

In further response to the COVID-19 pandemic, NIA supported more than 30 administrative supplements to address the challenges experienced by persons living with dementia and their care partners. Projects have included research on:

Transitioning dementia care interventions to virtual formats
Developing online family caregiving courses
Conducting epidemiology studies on the COVID-19 outbreak among persons living with dementia

Studying the effects of stay-at-home and social distancing requirements on community-dwelling adults, their care partners, and those with Alzheimer’s and related dementias who reside in nursing homes and assisted living communities.

Investing in the Future: Research Trainee Parveer Kaur

People with cognitive challenges and dementia are at risk of losing their ability to live independently as dementia worsens. Washington State University investigators are trying to help these individuals by developing a daily organizational tool and memory aid called the Digital Memory Notebook. A tablet application, the notebook is being tested with older adults who have thinking and memory challenges.

Through NIA’s Advancing Diversity in Aging Research (ADAR) through Undergraduate Education program, the investigators are recruiting students from underrepresented groups to conduct research to help improve the app. Their Gerontechnology-Focused Summer Undergraduate Research Experience program requires undergraduate research trainees to have a background in computer science and programming languages.

One of the trainees selected was Parveer Kaur. She shadowed clinicians as they trained older adults ages 65 to 81 to use the Digital Memory Notebook. Kaur used statistical programs to compare the research participants to determine why certain adults were more likely to adopt the app and gain high mastery. Her analysis enabled the research team to target older adults who are most likely to benefit from the Digital Memory Notebook, as well as continue to improve the app.

“I was so grateful to participate in the research experience at Washington State University because I realized that I enjoy working with the aging population, especially when I got to shadow the clinicians,” said Kaur.

In May 2020, Kaur earned a bachelor of arts degree in neuroscience and behavior with departmental honors from Vassar College in Poughkeepsie, New York, and in May 2021 earned a bachelor of engineering degree from Dartmouth College in Hanover, New Hampshire. Her long-term career goals include becoming an academic physician so that she can teach and continue doing research.

Program Spotlight: 2020 Dementia Care, Caregiving, and Services Research Summit

NIH and the broader HHS hosted a virtual meeting series for the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers , which was the second one on this topic. The first was held in 2017.

The summit brought together researchers, people living with dementia, care partners and providers, and advocates. Goals included evaluating evidence-based programs, strategies, approaches, and other research to improve the quality of care and of life for those living with dementia and their caregivers.

The event also provided a platform for identifying gaps and opportunities, which include the need to explore effects on health and receipt of care in people with dementia who live alone, who identify as a sexual/gender minority, who have a specific type of dementia, and those in other subpopulations. A

DementiaCareSummitReport.pdf (821.49 KB)

was released in December 2020.