January/February 2021

Dementia: Best Practice Caregiving
By Katie Maslow, MSW, FGSA, for the Best Practice Caregiving Project Team
Today’s Geriatric Medicine
Vol 14. No. 1 P. 28

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
Recent reports indicate that in the United States, 14 to 16 million family members and friends provide help with daily activities, emotional support, coordination of medical and social services, and many other kinds of assistance for older adults with dementia.5,6 These family members and friends, referred to in this article as dementia family caregivers, differ from each other in many ways that affect their experience of caregiving and the kinds of information, counseling, skills-training, support, and other help they may need for themselves. Their differences reflect both the specific causes, symptoms, and severity of dementia in the people for whom they provide care. Those who care for people with serious medical conditions such as diabetes, congestive heart failure, or cancer may have additional needs. The needs of dementia family caregivers also differ in other ways, depending on whether the people they care for live with them, nearby, or at a greater distance; whether they’re employed outside the home; and whether they’re simultaneously providing care for children or other relatives. Despite the many differences, recent research shows that, on average, caregivers of people with dementia are more likely than are caregivers of other older people to experience negative effects of caregiving, including high caregiving-related stress and emotional, physical, and financial burden.5,7-9

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.

Program Information
The database provides comprehensive information about many characteristics of each program, including the types of assistance it provides; whether it’s delivered to the caregiver only, the caregiver and the person with dementia, and/or other relatives and friends; the number and length of sessions; languages in which it is available; outcomes from research that has evaluated the program; and whether it’s delivered in person or by phone, online, or through a combination of methods.

Types of Assistance Provided
Among the many types of assistance provided by the programs and included in the database are assistance for the caregiver and person with dementia to reduce communication difficulties, obtain a dementia diagnosis, complete advance directives, understand and manage dementia-related symptoms, coordinate and access medical care, plan positive activities, manage pain, and arrange help with end-of-life care.12

For each program, the database also provides information about program implementation features that health care and social service professionals, other care providers, and organization leaders and administrators would need to understand in order to deliver the program. These features include the credentials, experience, and training needed for individuals who will deliver the program; available program manuals and training materials; any requirements for space, equipment, supplies, and licenses or other permissions; and delivery costs. In addition, the database provides contact information for the program developers or distributers so users can get in touch with questions about the program.

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
Shortly after the database was launched, care professionals, providers, and organizations that work with people with dementia and their families began to see the first negative effects of the COVID-19 pandemic on people with dementia and their families. It was clear that because of the need to self-quarantine, many dementia family caregivers would be unable or reluctant to participate in programs that are delivered in person. As the pandemic has spread and family caregiving has become more demanding and stressful, the need for programs that do not involve in-person contact has increased.

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.

Telenovela Mirela
Telenovela Mirela is an online story about a Hispanic/Latino family in which the grandmother has dementia. The family’s story is told in 18 Spanish-language episodes with English subtitles. It’s intended to increase caregivers’ and other family members’ understanding about dementia and dementia caregiving and their use of effective problem-solving and coping strategies.15,16 The program can be self-administered, but caregivers need to be made aware of it and know how to access it.

Savvy Caregiver
Savvy Caregiver is a group online program for dementia family caregivers led by a trained staff person and intended to increase knowledge about dementia and skills for caregiving and coping with stress. The program has been tested and found to be effective in various formats and languages and has been adapted for diverse racial and ethnic groups.17-20 During the pandemic, it’s being provided by organizations such as Alzheimer’s Los Angeles, which makes it available in a six-week session with one two-hour session weekly and a shorter version called Savvy Express, available in a three-week session with one two-hour session per week.21,22

BRI Care Consultation
This comprehensive program is delivered via phone and e-mail by trained professionals or paraprofessional care consultants. The consultants provide assessment, care planning, care coaching, referrals for medical and social services, and emotional support for dementia family caregivers and individuals with dementia. The care consultants are based in the Benjamin Rose Institute on Aging, where the program was developed, and in more than 30 other health care and community organizations across the country.23-25

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.

References
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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.

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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.

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16. Telenovela Mirela website. http://webmirela.com/. Published August 15, 2018. Accessed October 8, 2020.

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