Effectively Selecting Evidence-Based Programs: A New Online Resource to Compare Evidence-Based Dementia Caregiving

By David Bass, Jennifer Cardellini, Alyssa Ciancibello, Leah Eskenazi, Kathleen Kelly, Katie Maslow, Julie Rentsch and  Rachel Schaffer

According to a report by the Office of the Assistant Secretary for Planning and Evaluation of the U.S. Department of Health and Human Services, approximately 8.5 million family caregivers in the United States (e.g. spouses and adult children) provide the vast majority of care for people with dementia. Feelings of stress from caregiving can negatively affect the physical and emotional health, finances, and relationships for many of these family caregivers.

Evidence-based programs for dementia caregiving can help improve the ability of family and friends to assist a loved one with the challenges associated with caring for a person with dementia, and to access helpful resources. These programs represent a major advance in the field of dementia care, but a 2016 report by The National Academies of Sciences, Engineering, and Medicine, Families Caring for an Aging America, highlights that most health and social service organizations and service providers have not incorporated any of these programs into their services. Most organizations that serve people with dementia and their caregivers are unaware of these programs, or do not know how to access or implement them. While the number of people who would benefit from evidence-based programs continues to increase, there is no comprehensive information source that describes these programs, details their characteristics, and enables them to be compared.  

Understanding the need for this important resource, Benjamin Rose Institute on Aging and partners at the Family Caregiver Alliance have begun to develop a web-based resource to help health and social service organizations, providers, and funders compare and select evidence-based programs for dementia caregiving to implement or support. The project is being funded by The John A. Hartford Foundation, Archstone Foundation, and The Retirement Research Foundation. The Center for Research and Education at Benjamin Rose, under the direction of Dr. David Bass, and Katie Maslow, MSW, of the Gerontological Society of America, are leading the effort to develop content for the Online Resource by reviewing evidence-based programs designed to help families dealing with a dementia diagnosis. The San Francisco-based Family Caregiver Alliance, under the direction of Kathleen Kelly, MPA, is leading the development of the online database and website to help organizations compare and access programs.

This innovative resource will be housed on the Family Caregiver Alliance website. Profiles for the approximately 50 programs will include important characteristics about the evidence base, as well as information about implementation experiences of organizations that have delivered the programs. Implementation experiences are particularly important for organizations considering offering a new program. The Online Resource will enable 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 intend to serve. Examples of program characteristics to be displayed on the website include: amount and type of training provided for delivery staff; format and mode of program delivery; types of assistance provided; and stage, severity or type of dementia targeted. Also included will be information on how to access programs, with specific contact information for the program developers; costs and fees associated with delivering programs; and reimbursement and/or payment strategies that have been or could be used to sustain programs.

The project team is pleased to present about the ongoing work that is underway to develop the Online Resource at the upcoming ASA Aging in America Conference in San Francisco, including how programs will be categorized, and how the Online Resource will be marketed. Join us on Wednesday, March 28th from 1-2:30pm for “Online Resource for Comparing Evidence-Based Dementia Caregiving Programs” in the Hilton San Francisco Union Square - Union Square 19-20 (Tower 3, 4th Floor) to learn more.

David Bass, PhD, is Senior Vice President at the Center for Research and Education, Benjamin Rose Institute on Aging. Jennifer Cardellini is Marketing Manager for Research and Education and Website Content Manager at the Benjamin Rose Institute on Aging. Alyssa Ciancibello, MPH, is Research Analyst at the Benjamin Rose Institute on Aging. Leah Eskenazi, MSW, is the Director of Operations at Family Caregiver Alliance. Kathleen Kelly, MPA, is Executive Director at Family Caregiver Alliance. Katie Maslow, MSW, is Visiting Scholar at the Gerontological Society of America. Julie Rentsch, MA is Senior Research Analyst at Benjamin Rose Institute on Aging. Rachel Schaffer, MPH, is Research Analyst, Benjamin Rose Institute on Aging.