BRIA Comment for the Alzheimer’s Disease and Related Dementias Task Force, Public Forum

On Thursday, July 15, 2021, Benjamin Rose Institute on Aging President and CEO Orion Bell delivered the below testimony at The Alzheimer’s Disease and Related Dementias (ADRD) Task Force Public Forum. The Alzheimer’s Disease and Related Dementias Task Force was established by the Ohio General Assembly to examine the needs of individuals diagnosed with Alzheimer's disease or related dementias, the services available in this state for those individuals, and the ability of health care providers and facilities to meet the individuals' current and future needs. A report will be issued with the Task Force’s initial findings in August 2021. This testimony highlights three important recommendations to the Task Force to address quality of life and care concerns for individuals living with dementia and their family and friend caregivers in Ohio. 

----

Hello, I am Orion Bell, CEO of Benjamin Rose Institute on Aging, a Cleveland-based nonprofit organization whose mission is to support caregivers and empower all people to age well through research, consumer-responsive services and client advocacy. Thank you for the opportunity to address the Alzheimer’s Disease and Related Dementias Task Force.

Since the 1980s, Benjamin Rose Institute on Aging has been a leading organization in applied research and delivery of home and community-based services focused on the central role family and friend caregivers have in assisting persons living with dementia in the community, as well as the experiences and preferences of people living with dementia. This includes our services in northeast Ohio, as well as licensed sites and research projects across the United States.

Our work often begins with people living with dementia at home, outside of care facilities, who rely on family and friends to meet most of their needed assistance. We also focus on people living with dementia who live alone. Our research shows that persons living with dementia and their family and friend caregivers often have many unmet needs that go well beyond issues related to medical care and services. Their unmet needs are in all aspects of their lives, including for example, family relationships, daily activities, financial and legal issues, care coordination, and finding available sources of support. Quality care and support require holistic approaches that address medical and non-medical issues for both the person living with dementia and their primary and secondary family and friend caregivers. Additionally, we need to take active steps to reduce the stigma and isolation of dementia, which means making it a priority for campaigns of public awareness and education, so it is no longer a hidden problem.

Based on our portfolio of research findings, clinical observations from many leaders in the field with whom we collaborate, and our experiences delivering programs and services, we would like to offer three important recommendations to the Task Force. We believe addressing these recommendations in Ohio would improve quality of life, and quality of care and support, for both persons living with Alzheimer’s disease or other dementias and their family and friend caregivers. 

Recommendation 1: Increase the availability of proven, non-pharmacological evidence-based support programs developed by researchers and service providers across the US, including two programs developed here in Ohio by Benjamin Rose and many of our local partner organizations. 

A major advance in the field of dementia care and support has been the development of at least 50 different non-pharmacological programs that have been proven in controlled research to improve outcomes for families impacted by dementia and have been shown to be feasible for community-implementation by healthcare and community organizations outside of a research study. These programs are ready for scaling in communities but, unfortunately, they currently are not widely available to families. Benjamin Rose Institute on Aging in partnership with the Family Caregiver Alliance and The Gerontological Society of America, with support by The John A. Hartford Foundation, RRF Foundation for Aging, and Archstone Foundation, has created and launched a free website to help service organizations and policymakers learn about and compare these proven programs called “Best Practice Caregiving”. This website can be viewed at bpc.caregiver.org. It makes it easy for an organization to choose one or more programs to implement in Ohio. Two of these programs are homegrown by Benjamin Rose and a number of its collaborating partner organizations: BRI Care Consultation™ and SHARE for Dementia, both of which are familiar to several Task Force Members.  

• BRI Care Consultation™ is a low cost, care-coaching program delivered by telephone and computer by trained care consultants that offers ongoing guidance and support to both persons with dementia and their family and friend caregivers. 
• SHARE for Dementia is a six-session care-planning program delivered by trained SHARE counselors for both persons with early-stage dementia and their family or friend caregivers. The program focuses on values and preferences for future care, healthy activities, and ways to continue care at home for as long as possible. 

We believe all healthcare and community organizations in Ohio should be encouraged to deliver one or more of the nearly 50 available evidence-based programs approved by Best Practice Caregiving, so they are more widely available and used by caregivers and persons living with the disease. In addition, we believe these organizations should be provided with sustainable funding sources to ensure ongoing program delivery.

Benjamin Rose has been developing, researching, and disseminating non-pharmacological dementia care and support programs for 30 years. In the past five years alone, four Administration for Community Living funded projects have been implemented using BRI Care Consultation™ as their evidence-based program in Ohio – 1) Two in Northwest Ohio, one that was completed and led by the Ohio Department of Aging, and one active project being led by MemoryLane Care Services; 2) One in Summit County led by Summit County Public Health; and 3) One in Cuyahoga, Athens, and Washington Counties led by the Benjamin Rose, which also includes the delivery of SHARE for Dementia. Each of these projects involves several local and statewide partner organizations and together promote collaboration among dozens of separate Ohio organizations during time-limited periods when grant-funding is provided. We hope the work of this Task Force can help sustain these sources of support for the long-term, as well as expand their availability across the entire state so that all Ohio families dealing with dementia can benefit. 

Recommendation 2: Increase public awareness and education related to: getting a dementia diagnosis, symptoms of dementia, and finding services and support, through the expansion of dementia-inclusive communities through the Dementia Friendly America initiative and the Dementia Friends program.

Dementia Friendly communities consider the impact of dementia on all aspects of the community. They provide public and professional education on a wide range of topics such as brain health, identification and diagnosis of dementia, and culturally appropriate person- and family-centered care. Building dementia-friendly environments for people living with dementia in Ohio is critically important to Benjamin Rose and has become a pillar of our Consumer Information Initiative. The Consumer Information Initiative is part of our organization’s ongoing effort in creating and sharing high-quality, practical information with older people, families and professionals. 

Our work related to dementia-inclusive communities includes the dissemination of Dementia Friends USA in collaboration with Northeast Ohio Medical University and their Geriatric Workforce Enhancement Program, which also includes Summa Health, the Ohio Council for Cognitive Health, the Alzheimer’s Association, Northeast Ohio Area Agencies on Aging, and other health care and community-based organizations, and universities. In June, we hosted an event that brought together many organizations and leaders in Ohio working to create dementia-inclusive communities across the state. The goal was to promote statewide collaboration, and share best practices in planning, coordination, and implementation of dementia-inclusive communities. We were very pleased to have Director McElroy as a speaker, and to hear of the great work of this Task Force. A recent product of this effort was our dementia-inclusive community work in Cleveland Heights being recognized by Dementia Friendly America as a part of its national network of communities. 

One of the areas that requires more attention is reaching individuals with dementia and their caregivers in rural areas of the country, and particularly of Ohio. Rural areas deserve special attention because of their more limited service resources, the barrier distance can create among family and friend helpers, and the movement and relocation of family members to urban areas, which makes it less possible for them to serve as caregivers. An example of this work is a recently funded Alzheimer’s Disease Programs Initiative grant to Benjamin Rose from the Administration for Community Living, “Expansion of Dementia-Capable Communities within Urban and Rural Settings in Ohio using Evidence-Based and Informed Programming”. This project expands our dementia-inclusive community efforts more broadly into urban Cuyahoga, and rural Athens and Washington Counties. Our partners in this initiative include the Ohio Council for Cognitive Health, Miami University Scripps Gerontology Center, United Seniors of Athens County, O’Neill Senior Center, Welcome House and Gloria’s Way. Partners are implementing Dementia Friends in project counties to help individuals learn what it's like to live with dementia and then turn that understanding into action. We are also providing supplemental education webinars on various dementia and caregiving topics that are being led by experts in the field that are accessible at www.benrose.org along with other informational resources.

Recommendation 3: Increase applied research and supportive services and programs focused on people living with dementia and their caregivers who: live alone; are from diverse racial or ethnic communities or have diverse gender identifies; and who have intellectual or development disabilities in addition to dementia. 

The Alzheimer’s Association recently released a special report titled, “Race, Ethnicity and Alzheimer’s in America”. The report highlights how dementia can affect racial and ethnic groups differently, and striking statistics regarding how dementia affects minority populations at higher rates. More attention and funding are needed to develop programs to better serve individuals from diverse communities and a concentrated effort on disparities resulting from limited service access and discrimination (Alzheimer’s Association, 2021). 

Another neglected population is persons with dementia living alone, with some estimates showing 50 percent of those individuals without an identifiable family or friend caregiver (Dementia Friends for Individuals Living Alone, 2021). Connecting these individuals with proven programs and services are particularly important, including things such as home-delivered meals and transportation services. These individuals are more often socially isolated and at higher risk of self-neglect, malnutrition and financial exploitation (Dementia Friends for Individuals Living Alone, 2021). 

Individuals with intellectual and developmental disabilities are another population where dementias can present differently. Alzheimer’s disease is more common in individuals with Down syndrome than those with other forms of intellectual disability because of the third copy of chromosome 21 found in individuals with Down syndrome (Dementia Friends for Individuals with Intellectual and Developmental Disabilities, 2021). The Ohio Council for Cognitive Health as the state lead for Dementia Friends has developed a version of Dementia Friends with information about individuals who live alone with dementia and a version about individuals with intellectual and developmental disabilities and dementia that is being disseminated throughout many ACL projects in the state and speaks to the unique needs and challenges faced by these individuals. These programs provide community members with an opportunity to learn how to recognize signs and symptoms, communicate effectively, and identify resources and steps they can take to better support these individuals in their communities. Furthermore, the ACL grants have allowed the opportunity to implement and adapt BRI Care Consultation for individuals with intellectual and developmental disabilities with or at-risk for dementia and their caregivers, or other supporters. The program provides much-needed personalized support for families to understand changes in behavior and functioning and create action steps to help address concerns. In addition, the program helps family and friends cope with care-related challenges and reduces their levels of strain and burden as caregivers.

Conclusion

According to the 2019 National Health and Aging Trends Study, 85 percent of Americans living with Alzheimer’s Disease or other dementias live in the community.  Those who are able to do so safely and successfully rely on informal and familial supports. As we consider how to best meet the needs of this population, we must consider not only their medical care, but also the social and community supports that address their quality of life, and the lives of the family and friends who care for them.  Doing so helps support our ability to age gracefully, to stay connected with our loved ones and to be part of our community.   

Thank you for your commitment to this effort.

Orion Bell
President & CEO
Benjamin Rose Institute on Aging