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Three Wishes for Dementia Care

On Thursday, July 15, 2021, Benjamin Rose Institute on Aging President and CEO Orion Bell delivered a testimony at The Alzheimer’s Disease and Related Dementias (ADRD) Task Force Public Forum. This testimony highlighted 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. The following blog features talking points from Orion’s testimony, which can be read in full here.

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. 

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If you ask people what they fear most about growing older, many of them will mention dementia. It is the “fear that shall not be named.” A 2019 report in the Journal of the American Medical Association shared that nearly half of adults between ages 50 and 64 believe they will develop dementia. But few adults share their concerns with their physician. Physicians don’t want to discuss it either. A 2021 AARP report showed that “health care providers substantially overestimate the worry that adults age 40 and older would feel if they had dementia. While one in five adults said they would feel ashamed or embarrassed if they had dementia, a staggering seven in 10 providers said their patients would feel ashamed or embarrassed.”

Alzheimer’s and other dementias present a challenge for communities and care providers. People are living longer, and as life expectancy increases, governments, healthcare providers and community-based organizations need to consider how to prepare for the greater numbers of older adults. What will be their care needs? And who will provide that care? Much of the focus on the care needs of people living with dementia is on medical treatment, institutional care or assisted living. But in sharing our recommendations with the ADRD Task Force, Benjamin Rose Institute on Aging focused on ways to support family caregivers, raise awareness and support in communities to address the needs of vulnerable populations.  

The ADRD Task Force will provide, in part, a “wish list” of needed services and supports for Ohioans living with dementia. This is a critical component of planning for the future. At Benjamin Rose, 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. So, in that spirit, here are our Three Wishes for Dementia Care.

 

Our first wish: Increase the availability of proven support programs for family caregivers.

 

Family and friend caregivers provide nearly $500 billion in uncompensated care for their loved ones annually in the U.S. Benjamin Rose has been developing, researching and disseminating non-pharmacological dementia care and support programs for more than 30 years. Today, there are many non-pharmacological programs that have been proven to improve outcomes for families impacted by dementia. 

Unfortunately, these supports 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 launched a free website to help service organizations and policymakers learn about and compare these proven programs called “Best Practice Caregiving”. The site helps organizations choose one or more programs that best meet the needs of their communities. Two of these programs are homegrown by Benjamin Rose and a number of its collaborating partner organizations: BRI Care Consultation™ and SHARE for Dementia.

We believe all health care and community organizations 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.

 

Our second wish: Increase public awareness and education regarding dementia to reduce stigma and develop community supports for those with dementia and the people who care for them.

 

Most of us don’t want to talk about dementia. Fear of the condition, and the stigma associated with it means that people don’t get tested or don’t ask for help. This can lead to greater social isolation and caregiver burden. Dementia Friendly America® helps communities consider the impact of dementia. It provides 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. These programs help people understand dementia, and learn how businesses, churches, civic groups and other organizations can support people with dementia living in their communities. 

More attention to reaching individuals with dementia and their caregivers in rural areas is needed. These communities often have limited services or access to resources. Travel distance can create barriers for family and friend helpers, and the movement and relocation of family members out of the area makes it harder for them to serve as informal caregivers. 

 

And our third wish: Increase supportive services and programs for the most vulnerable populations living with 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 provides striking statistics regarding how dementia affects minority populations at higher rates. More attention, funding and a concentrated effort on disparities resulting from limited access to services and discrimination are needed to develop programs to better serve individuals from diverse communities. 

Another vulnerable population is persons with dementia living alone. As much as 50 percent of those individuals with dementia living alone do not have an identifiable family or friend caregiver. These individuals are more often socially isolated and at higher risk of self-neglect, malnutrition and financial exploitation. Connecting these individuals with proven programs and services, including things such as home-delivered meals and transportation services, helps reduce their risks.

Individuals with intellectual and developmental disabilities are another population where dementias can present differently. The Ohio Council for Cognitive Health 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. 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.

 

It is up to us to see our wishes granted

 

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 family and friend 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. 
 

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