Best Practices in Dementia Caregiving: New Tool Helps Organizations that Support Family Caregivers

Despite the success of new and established programs that support family members and friends caring for people living with dementia, many remain unknown or unavailable to the caregivers who need them the most.

Best Practice Caregiving, a new web-based resource, helps solve this problem by providing organizations that serve family caregivers with a tool to easily compare and select evidence-based programs for dementia caregiving. The database serves as a single source of detailed information on more than 40 programs from across the U.S. For the first time, healthcare and community service organizations, providers, funders and policy makers have an easy-to-use, comprehensive resource to learn about and compare many of the top dementia caregiving programs.

Three years in the making, Best Practice Caregiving is a product of the collaboration among three leading organizations in the field of aging and caregiving: Benjamin Rose Institute on Aging, Center for Research & Education; Family Caregiver Alliance: National Center on Caregiving; and The Gerontological Society of America.

“This database makes finding high-quality support programs for family caregivers easier and more efficient,” said Kathleen Kelly, executive director of Family Caregiver Alliance. “It’s a way for health and service providers to compare a range of evidence-based programs, determine the best fit for clients and patients, and learn what training is needed to offer these programs in any community.”

Best Practice Caregiving is a free, searchable web-based tool that includes information on each program’s evidence base, implementation requirements, as well as information about the implementation experiences of organizations that have delivered the programs. Best Practice Caregiving enables organizations to evaluate which programs best complement their existing services, align with their current available resources and funding opportunities, and meet the needs of family caregivers they serve.

Approximately 16 million Americans care for loved ones with Alzheimer’s disease, stroke and other conditions that cause dementia. This number is growing each year, as the number of people with dementia steadily increases and may triple by 2050. Caregiving for a person with dementia can be especially challenging — in fact, dementia caregivers are twice as likely as other caregivers to report adverse effects of caregiving on their physical and emotional health, financial situation, and personal relationships.

Studies show that well designed support programs for caregivers and individuals with dementia can increase skill levels, coping strategies and well-being.

“There is an increasing demand for support, information and training programs for dealing with dementia,” said David M. Bass, PhD, senior vice president at Benjamin Rose Institute on Aging. “By providing this tool to the local organizations that directly serve family and friend caregivers and people living with dementia, we hope to expand the availability of proven best practices to many more families across the country.”

“We have proven programs that can help families living with the devastating impact of dementia, but they need to be embedded in the practice of organizations that serve family caregivers,” said Terry Fulmer, PhD, RN, FAAN, president of The John A. Hartford Foundation, one of the project’s funders. “Best Practice Caregiving provides an easy way for organizations to find the vetted, evidence-based dementia caregiving programs that will work best for the people they serve.”

“This resource was compiled by leading experts on caring for persons with dementia,” said Nancy R. Zweibel, PhD, FGSA, senior program officer at The Retirement Research Foundation, another of the project’s funders. “Service organizations will not only learn about many effective programs but will also get a leg up on implementing one or more of them given the detailed information Best Practice Caregiving incorporates.”

About the Project

The Best Practice Caregiving database features an easy-to-use program-compare tool and provides detailed information about:

• the focus of each program (e.g., reducing stress, understanding dementia, planning care, skill-building, health and wellness)
• delivery method (online, in-person, telephone)
• research findings
• real-world experiences of organizations and providers that have implemented the program
• program developer and distributor information

Criteria for inclusion in the database are:

• published research with positive caregiver outcomes
• program feasibility (program has been offered by healthcare or social service organization or service provider as a service to dementia caregivers)
• permission or license to use the program (manuals, training or tools to deliver the contents must be available)

Project funders are The John A. Hartford Foundation, Archstone Foundation, and The Retirement Research Foundation.

For more information, visit Best Practice Caregiving at https://bpc.caregiver.org.

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The Gerontological Society of America (GSA) is the nation's oldest and largest interdisciplinary organization devoted to research, education, and practice in the field of aging. The principal mission of the Society — and its 5,500+ members — is to advance the study of aging and disseminate information among scientists, decision makers, and the general public. GSA’s structure also includes a policy institute, the National Academy on an Aging Society, and an educational unit, the Academy for Gerontology in Higher Education.

Founded in 1908, Benjamin Rose Institute on Aging is a nationally recognized Cleveland-based nonprofit whose mission is to advance support for older adults and caregivers. This work is accomplished by deepening the understanding of their evolving needs in a changing society; promoting effective public policies; and developing and delivering innovative, high-quality solutions, including evidence-based programs that are tested and proven by research to achieve beneficial outcomes for consumers.

Established in 1977, the Family Caregiver Alliance (FCA) supports and assists caregivers through education, services, research, and advocacy. FCA programs support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions. In 2017, FCA launched CareJourney, a scalable online service able to deliver quality information, education, and services to a growing family caregiver population. The National Center on Caregiving, established at FCA in 2001, works to advance the development of high quality cost-effective policies and programs for caregivers in every state of the country.