Dementia: Best Practice Caregiving
A New Resource for Health Care and Social Service Professionals, Providers, and Organizations That Work With Dementia Family Caregivers
Numerous programs to help family caregivers of people with Alzheimer’s disease and other dementias have been developed, tested, and found to be effective in the United States.1-4 However, these programs are not available in many US communities, and dementia family caregivers often say they cannot find the help they need.
One reason the programs are not widely available is that some health care and social service professionals, other care providers, and organization leaders and administrators who might deliver the programs are not aware of them. Moreover, even individuals who are aware of some of the programs generally have not had easy access to information that would allow them to compare existing programs and determine which match the needs of their patients and clients and what it would take to provide them.
In early 2020, a searchable online database of programs to help dementia family caregivers was launched on the website of the Family Caregiver Alliance. The database, Best Practice Caregiving, is free and easily accessible at bpc.caregiver.org. It includes comprehensive information about more than 40 programs that have been found to be effective for dementia family caregivers, and new programs and updates to the existing programs are added regularly. Although the database is available to anyone, it’s primarily intended as a resource that health care and social service professionals, other care providers, and organizations that work with people with dementia and their families can use to learn about and compare existing programs and then decide which programs to offer their patients and clients.
Dementia Family Caregivers
To be included in Best Practice Caregiving, programs for dementia family caregivers must have published research-based evidence of one or more statistically significant positive outcomes for caregivers of people with dementia who are living in the community. The programs are not required to provide evidence of effectiveness for the people with dementia, but many of the programs in the database do have such evidence.
In addition to evidence of effectiveness for family caregivers, programs must offer evidence of feasibility. Many researchers, health care and social service professionals, other care providers, and organization leaders and administrators have expressed strong concerns about programs that have research-based evidence of effectiveness but are very difficult to implement in “real-world” settings and therefore, are not widely adopted.4,10,11 To address this problem, Best Practice Caregiving requires that included programs have been providing or are being provided in at least one nonresearch setting where they are delivered as a regular service offering for patients and clients.
Types of Assistance Provided
The database allows users to compare three programs at a time with respect to the types of assistance they provide and any of the other program characteristics mentioned previously. Users can, for example, search for and compare programs that are provided in Spanish or another language.
Best Practice Caregiving does not include quality ratings for programs, primarily because there is no agreed-upon system for identifying types of programs so that credible and fair quality comparisons can be made.3,4,13 Instead, it provides as much detail as possible to allow care professionals, providers, and organization leaders and administrators to make informed decisions about which programs match the needs of their patients and clients and fit with their available staff and other resources.
Each of the 44 programs in the database provided contact information for other care professionals, providers, and organization leaders and administrators who have delivered the program. More than 230 of these individuals completed a survey about their experience and satisfaction with the programs they delivered, any modifications they made to them, their delivery costs, funding sources they found to help pay for delivery, and their challenges and successes in providing the programs.14 These responses, which are included in the database, may also be helpful to others who are trying to decide which programs would be best for them.
Finding Programs for Dementia Family Caregivers Affected by COVID-19
A pandemic was certainly not anticipated when Best Practice Caregiving was developed, but when the need for programs that could be delivered by phone or online became clear, the project team was able to use the database to search for such programs. Most of the programs in the database are delivered in person, but the team found 12 programs that do not require in-person meetings. Some of them can be accessed online and self-administered. Others are available online or by phone but require staff training and other delivery resources. Three of the 12 programs are described briefly below.
BRI Care Consultation
The wide array of programs in the current database means that programs already exist that could meet many of the diverse needs of dementia family caregivers. More programs are being developed, and it’s likely that some of the programs in the database that do not have phone or online delivery methods will develop them. These new and adapted programs will be added to the database when it’s clear they meet the requirements for research-based evidence of effectiveness and feasibility for implementation in real-world settings.
The Best Practice Caregiving team hopes the database will help health care and social service professionals, other care providers, and organization leaders and administrators identify one or more effective programs they can provide to dementia family caregivers and thereby reduce the negative effects of caregiving for them and improve their well-being and quality of life as well as those of the people with dementia for whom they provide care.
Acknowledgements: Development and dissemination of Best Practice Caregiving has been supported by The John A. Hartford Foundation, Archstone Foundation, and RRF Foundation for Aging.
— Katie Maslow, MSW, FGSA, is a visiting scholar at the Gerontological Society of America (GSA). The focus of her work is care-related issues for people with cognitive impairment, dementia, and coexisting medical conditions and their family caregivers. She was cochair of the 2017 National Research Summit on Care, Services and Supports for Persons with Dementia and Their Caregivers and has assisted in gathering stakeholder group recommendations for the 2020 National Research Summit. Before joining GSA in 2016, Maslow was a scholar-in-residence at the Institute of Medicine, National Academies of Science, in Washington, D.C., where she worked on studies of geriatric mental health, cognitive aging, and advanced dementia. She previously conducted policy-related research for the Alzheimer's Association and the U.S. Office of Technology Assessment, a congressional research agency. She has a social work degree and is a GSA fellow.
2. Gitlin LN, Hodgson N. Caregivers as therapeutic agents in dementia care: the context of caregiving and the evidence base for interventions. In: Gaugler JE, Kane RL, eds. Family Caregiving in the New Normal. Waltham, MA: Academic Press; 2015:305-353.
3. Administration on Aging; Alliance for Aging Research; MetLife Foundation. Translating innovation to impact: evidence-based interventions to support people with Alzheimer’s disease and their caregivers at home and in the community. https://www.agingresearch.org/app/uploads/2018/03/508-Compliant-AoA-White-Paper-for-Release.pdf. Published September 2012. Accessed October 6, 2020.
4. National Academies of Sciences, Engineering, and Medicine. Families caring for an aging America. https://www.nap.edu/read/23606/chapter/1. Published 2016. Accessed October 6, 2020.
5. 2020 Alzheimer’s disease facts and figures. Alzheimers Dement. 2020;16(3):391-460.
6. National Alliance for Caregiving; AARP. 2020 report: caregiving in the U.S. https://www.caregiving.org/wp-content/uploads/2020/06/AARP1316_RPT_CaregivingintheUS_WEB.pdf. Published May 2020. Accessed May 30, 2020.
7. US Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation. Community-dwelling older adults with dementia and their caregivers: key indicators from the National Health and Aging Trends Study. https://aspe.hhs.gov/system/files/pdf/260371/DemChartbook.pdf. Published January 2019. Accessed May 30, 2020.
9. Wolff JL, Spillman BC, Freedman VA, Kasper JD. A national profile of family and unpaid caregivers who assist older adults with health care activities. JAMA Intern Med. 2016;176(3):372-379.
10. Cohen-Mansfield J, Buckwalter K, Beattie E, Rose K, Neville C, Kolanowski A. Expanded review criteria: the case of nonpharmacological interventions in dementia. J Alzheimers Dis. 2014;41(1):15-28.
11. Administration on Aging. Translating evidence-based dementia interventions to the community: experience of the Administration on Aging’s ADSSP grantees. https://nadrc.acl.gov/sites/default/files/uploads/docs/Translation_of_EB_Interventions_final_508.pdf. Published May 2017. Accessed October 6, 2020.
14. Schaffer R. Organizations that deliver programs in Best Practice Caregiving. Paper presented at: American Society on Aging Virtual Conference; September 29, 2020.
16. Telenovela Mirela website. http://webmirela.com/. Published August 15, 2018. Accessed October 8, 2020.
17. Griffiths PC, Whitney MK, Kovaleva M, Hepburn K. Development and implementation of Tele-Savvy for dementia caregivers: a Department of Veterans Affairs Clinical Demonstration Project. Gerontologist. 2016;56(1):145-154.
18. Hepburn K, Lewis M, Tornatore J, Sherman CW, Bremer KL. The Savvy Caregiver program: the demonstrated effectiveness of a transportable dementia caregiver psychoeducation program. J Gerontol Nurs. 2007;33(3):30-36.
19. Lewis ML, Hobday JV, Hepburn KW. Internet-based program for dementia caregivers. Am J Alzheimers Dis Other Demen. 2010;25(8):674-679.
20. Oakes SL, Hepburn K, Ross JS, Talamantes MA, Espino D. Reaching the heart of the caregiver. Clin Gerontol. 2007;30(2):37-49.
21. The Savvy Caregiver. Alzheimer’s Los Angeles website. https://www.alzheimersla.org/alzheimers-los-angeles-services/classes-and-workshops/savvycaregiver/. Accessed October 9, 2020.
22. Aranda MP, Cherry D. Lessons learned from savvy express: a feasibility study of a psychoeducational intervention for care partners. Innov Aging. 2019;3(Suppl 1): S285-S286.
23. Bass DM, Clark PA, Looman WJ, McCarthy CA, Eckert S. The Cleveland Alzheimer’s managed care demonstration: outcomes after 12 months of implementation. Gerontologist. 2003;43(1):73-85.
24. Bass DM, Hornick T, Kunik M, et al. Findings from a real-world translation study of the evidence-based “Partners in Dementia Care.” Innov Aging. 2019;3(3):igz031.
25. Bass DM, Judge KS, Snow AL, et al. Caregiver outcomes of Partners in Dementia Care: effect of a care coordination program for veterans with dementia and their family members and friends. J Am Geriatr Soc. 2013;61(8):1377-1386.