Best Programs for Caregiving: A New Tool Available to All Dementia Caregivers

When I tell people I’m a gerontologist, often their first question (after asking what a gerontologist is!) is whether I can solve an aging-related challenge facing them, a friend or relative – either as an older adult or as a caregiver. Even with my background in aging, when it comes to questions about caring for someone with dementia, I’ll admit I haven’t always had the best answers; finding programs and resources with promising reputations, and which meet their specific needs and preferences, can be overwhelming and difficult.

But now I have a great and free resource to recommend: Best Programs for Caregiving, a website where families and friends caring for people with dementia can find proven support programs that meet their language and cultural preferences. This is a gamechanger for the estimated 16 million Americans who are primary caregivers of people with dementia, many of them the spouses and children who provide more than 80 percent of care for these high-need individuals.

The site provides information on evidence-based programs proven to reduce such negative side effects of caregiving as physical pain, financial strain and emotional stress including isolation and depression, which dementia caregivers are twice as likely to experience as other caregivers.

This may sound familiar to professionals in aging. That’s because the site – created by Benjamin Rose Institute, Family Caregiver Alliance, and the Gerontological Society of America – had been called Best Practice Caregiving and was geared to providing aging professionals a database of top-rated programs that support family caregivers of people with dementia, including detailed information on programs and research backing them up. But while the target audience was healthcare and community-based organizations looking for the best support programs, and funders and policy makers looking to promote those programs, many family caregivers also turned to the old site for guidance.

Putting a great resource in everyone’s hands

That’s why two years ago we joined The John A. Hartford Foundation and RRF Foundation for Aging to fund a refashioning of the site so it could be used as easily by family and friend caregivers as by professionals. An important change is the addition of information on how programs are designed, adapted, or translated to meet a wide range of cultural and linguistic needs. To accomplish this, Benjamin Rose and Family Caregiver Alliance partnered with the Diverse Elders Coalition, six national organizations that advocate for policies and programs that improve aging for racially and ethnically diverse people, American Indians and Alaska Natives, and lesbian, gay, bisexual, and transgender people. Members of the coalition recruited caregivers from their organizations to provide feedback on the design, use, and marketing of the new site to ensure it would be helpful to those of all backgrounds. Two of their most useful recommendations:

• Caregiver education and outreach by trusted community organizations is important, because people from some cultures may not self-identify as family caregivers when the caregiving role is obligatory or culturally expected.
• Identifying racial and ethnic subgroups is important, because of the many cultures and languages in each group. The catchall label Asian American and Pacific Islanders, for example, discounts the variability in a group that includes those from Central Asia, East Asia, Hawaii, other Pacific islands, and South Asia.

How family caregivers can use the site

If you or those in your organization work with caregivers, we recommend giving the new easy-to-use tool a try and sharing it with those you work with. After going to BPC.caregiver.org, click on “I Care for Someone with Dementia” and enter either your zip code or the one for the person being cared for. Then you can browse all the locally available programs and click “Learn More” for details on each.

A search of 90802 (the Foundation’s headquarters neighborhood in Long Beach) turned up 29 dementia caregiver support programs, including some remotely available nationwide. ACTS 2 (African-American Alzheimer's Caregiving Training & Support Project 2) might catch the eye of a Black caregiver, for example, and clicking on the program name will yield information including:

• Types of help provided
• Fees and payment options
• Enrollment process
• Geographic area served
• Program details including method of delivery (online, in person or printed), number and length of sessions, and instructor’s background

Ensuring Equity

Recognizing the heterogeneity of minority populations, the Foundation’s funding supported inclusion of detailed information on cultural and linguistic program features and adaptations to meet the varied needs of all caregivers. This includes specifying the languages each program is available in and all the ways programs are tailored for different communities:

• Content adapted for a group
• Consultation provided from advocates for a group
• Delivered in language(s) used by a group
• Materials translated to language(s) used by a group
• Outreach and marketing tools adapted for a group
• Research on program benefits for a group
• Staff training on how to best work with caregivers from a group

For example, the listing for Savvy Caregiver, a program delivered by Alzheimer’s Los Angeles and available in Long Beach, makes clear it is offered in Chinese, Mandarin, Cantonese and Spanish, publishes program materials in those languages, and has been adapted for both the Hispanic/Latino and Mexican or Chicano/a communities.

How to spread the word

Sharing the new Best Programs for Caregiving website can be as simple as sharing the URL. But if your work is with a network of caregivers that could benefit, then download and widely share the toolkit on the site, which has ready-to-use content and messaging for newsletters and social media channels, flyers for dementia caregivers and general audiences, and website logos to use on social media or on an organization’s website.

Our hope is that, with the rapid embrace of this new online resource, caregivers for people living with dementia will soon have ready access to the resources and support they need – and deserve.