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Legacy of Love 2024 focuses on dementia caregiving

Dozens of caregivers and professionals celebrated the start of National Family Caregivers Month at the “Legacy of Love” African American Caregivers Forum on Nov. 2 at the Northwest African American Museum in Seattle. This culturally focused event is hosted each year by Aging and Disability Services (ADS), the Area Agency on Aging for Seattle and King County, along with its City and community partners.

The Legacy of Love forum is an opportunity for caregivers to connect with their peers and hear from experts. This year’s event was focused on providing care for people experiencing dementia.

ADS Director Mary Mitchell welcomed everyone to the forum and said that these caregivers face unique challenges.

“I know that all family caregiving can be stressful and difficult,” Mitchell said. “But when you are caring for a parent or family member with dementia — one who may not even recognize you anymore — that can make the emotional strain so much worse. That’s why I’m so grateful that caregivers can come together at Legacy of Love to share their knowledge and experiences with each other.”

Keynote speaker Beverly Kimmons, who serves as Diversity, Equity, and Inclusion Director for the Washington State Chapter of the Alzheimer’s Association, shared some alarming statistics:

• Nearly 7 million Americans are living with Alzheimer’s and more than 11 million provide unpaid care for people with Alzheimer’s and other dementias.
• Black Americans are about twice as likely as White Americans to have Alzheimer’s or another form of dementia, but they are less likely to receive a diagnosis.
• Half of Black Americans report that they have experienced discrimination while seeking dementia care. Given that people of color are underrepresented in clinical trials, nearly two-thirds believe medical research is biased against them.

This experience of discrimination is compounded by a broader mistrust: around two-thirds of people of color believe that medical research is biased against them, a concern rooted in historic and systemic disparities. This mistrust further impacts representation in clinical trials, where people of color remain significantly underrepresented, resulting in less inclusive data and potential disparities in care outcomes.

Kimmons emphasized that Black caregivers — who tend to be women — should show themselves some grace by getting help and not trying to be “superwomen.”

“Give yourself permission not to be a strong Black woman,” she said. “Put that burden down and ask for some help when you need it. There is no shame in that. You need to take care of yourself, because if you go down, what happens to the person you provide care for?”

The Alzheimer’s Association has a national 24/7 Helpline at 1-800-272-3900 for caregivers to talk through their challenges and help them find community resources to help.

Similarly, ADS supports a program called Community Living Connections, which offers free consultations with specialists who can tailor support services to meet the unique needs of unpaid caregivers in Seattle and King County. Those services may include:

• Referrals to local support groups, counseling, and other resources
• Training on specific caregiving topics
• Advice on use of supplies and equipment
• Practical information and caregiving suggestions
• Respite care, if they just need a break

The forum also screened Today Was a Good Day, a documentary exploring the different perspectives of three caregivers in Michigan about their roles and responsibilities. (Watch it on Vimeo.) The film’s director, David Wild, then answered questions from forum participants.

Cydney Barnes, Owner/CEO of Live to Leave Your Legacy, shared information about The Most Important Gift You Can Give Your Loved Ones by “Setting Your Affairs in Order.” She answered questions about estate and legacy planning, advance funeral arrangements, travel plans, and much more. Advance care planning helps relieve the emotional and financial burden off your family and/or loved ones during difficult times.