Evidence-Based Programs: Why They Matter for Dementia Caregivers
Caregivers for loved ones with dementia are familiar with the effort, dedication and time needed to provide quality care. It’s next to impossible to do on one’s own, yet asking for help and finding resources isn’t always easy. Even though it feels at times like there’s a long list of programs, services and caregiver resources out there, it may still feel like there’s nothing that fits your individual needs at the moment you need it. And even if there is, how can you know the program or service is reliable, high-quality or will even work to help you and your loved one in the first place?
Evidence-based dementia caregiving programs are one solution to this problem. However, many caregivers are unfamiliar with what they are, the purpose they serve and how to access them.
What are evidence-based programs?
Evidence-based programs are programs that have been thoroughly tested through experimental research studies and proven through evidence to be effective.
When applied to dementia care, evidence-based programs are designed to improve the quality of life of individuals with dementia and/or their caregivers. Different programs focus on different needs. Some examples include:
- Benjamin Rose Institute on Aging’s SHARE for Dementia, an evidence-based program which engages people with dementia and their caregivers in planning for the future through discussions about symptoms, care values and preferences, and healthy activities.
- Early-stage Partners in Care (EPIC), an evidence-based program to assist individuals with early-stage memory loss and their caregivers through education and training workshops.
- Care of Persons with Dementia in their Environments (COPE), an evidence-based program focused on improving home environments, managing medical needs and managing caregiver challenges and stress.
- Benjamin Rose Institute on Aging’s BRI Care Consultation, delivered by our organization under the name WeCare…Because You Do, an evidence-based program which provides care-coaching to adults with health conditions and their caregivers, empowering both to manage present and future care needs.
Why do evidence-based programs matter?
Unfortunately, being a caregiver can often be a high-risk role. Research shows that caregivers often face the following challenges:
- High levels of stress, depression and anxiety
- Poorer health and increased risk of developing chronic conditions
- Poorer self-image and self-care
- Increased financial burden
Part of the evidence supporting evidence-based programs is the positive health and quality of life outcomes that many are shown to provide. Evidence-based programs can tackle the above issues and give caregivers the tools they need to care for themselves while caring for someone else. They also provide education that can help caregivers feel more informed and confident, as well as action items that can help both in improving care in the present and planning for the future.
Where can I find evidence-based programs?
- Search online. Benjamin Rose Institute on Aging and Family Caregiver Alliance developed Best Practice Caregiving, a free online database of evidence-based programs for family caregivers of individuals with dementia. It provides detailed information on the focus of each program, how each program is implemented, the research findings of each program, and much more.
The current version of Best Practice Caregiving was developed to use by organizations and other professionals who work closely with family caregivers. However, a new version of the website is being developed for use by family caregivers that will which will make this information more accessible to family caregivers themselves.
- Contact organizations and providers for referrals. Hospitals, home care agencies, senior centers, your local Area Agency on Aging—all of these can be great sources of recommendations and referrals. Dementia organizations like the Alzheimer’s Association are also dedicated to connecting families to helpful services and proven programs.
To learn more about evidence-programs, watch the below video for an interview with Dr. David Bass, one of the developers of Best Practice Caregiving and BRI Care Consultation™:
This article was written as a part of the Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming project, funded by the Administration for Community Living, Alzheimer’s Disease Program’s Initiative (#90ADPI0052-01-00).