As we approach the holiday season, it’s essential to recognize that this time of year so often comes with added family stress for those caring for someone with Alzheimer’s disease or dementia. November marks Alzheimer’s Awareness Month, a time dedicated to spreading awareness, offering support, and encouraging action led by national organizations such as the Alzheimer’s Association and the Alzheimer’s Foundation of America which continue to provide broad resources to families impacted by dementia.
But beyond the national spotlight, it is also a time when communities can reflect on how to serve people of all backgrounds who may be struggling with dementia. Like each family’s uniqueness, local communities often have distinctive insights into what their friends and neighbors need.
At Links2Equity, we are dedicated to understanding how culturally competent care strategies in communication, community gathering, and local leadership can improve the lives of all people across all disease states. This is key to improving health disparities across various backgrounds and creating a more equitable healthcare system.
Local and grassroots organizations are at the heart of understanding how local culture impacts education and awareness efforts in public health. In our work with community-based organizations, we’ve found three key strategies to improve outreach to underserved populations and to create meaningful education and awareness about Alzheimer’s and dementia: speaking the community’s language, working with community cornerstones, and highlighting the success stories within the community.
One great example of implementing these three strategies is the Links2Equity webinar series on Alzheimer’s disease. Through these educational tools, we also learned how to leverage community organizations to connect with black and brown commentators on a community level, inviting them to share their expertise and build relationships that reach further into the community.
Now, let’s look deeper at each of the three strategies and what they might mean for your advocacy efforts.
Strategy 1: Speak Their Language
Engaging diverse communities is more than just translating information into another language. It’s about offering culturally informed messaging that resonates with your audience. We must address where people receive information and how people prefer to communicate.
For example, many health educators and care providers rely heavily on email or social media to reach their patient population. For families with limited internet access, these tools may not be effective. We observed that texting was far more effective than email outreach for Hispanic and Latino families in the communities we served. This knowledge helped us reach a larger portion of the community, making it more likely for members to engage in our programs. The best way to learn what communication tactics are preferred is to get out into the community and ask.
“Speaking their language” also means more than literally translating materials into local languages. A great example comes from the Texas Department of Aging and Disability Services, which serves many constituents from Hispanic and Latin backgrounds. They recommend that outreach to Hispanic caregivers highlight the importance of family in care, avoiding words like “burden” that can feel like someone is complaining about their loved one. Identifying local organizations and trusted spokespersons (such as promotoras in Texas) can also help the message be heard. Many states offer similar resources on culturally literate care that can serve as a guide in outreach.
Strategy 2: Understand the Community Cornerstones
Each local community is built around cultural cornerstones: places where individuals, families, friends, and other social networks gather and share information. Regional leaders also provide insights into the unique needs facing their neighbors, families, and friends. Understanding these anchors helped us identify where to direct outreach efforts.
For example, the suburban, wealthy community of Westchester County, New York, will have very different cornerstones than the more rural community of Lexington, Kentucky. Plainly put, what works in New York won’t necessarily work in Kentucky.
We’ve found that relying on the local, diverse community cornerstones is vital. That’s why our work involved the University of Kentucky School of Medicine and leaders in faith-based communities, including pastors of the Shiloh Baptist Church and Zion Baptist Church. We also brought the local leaders of national organizations into these conversations, including chapters of the Alzheimer’s Association and NABVETS.
This strategy – reaching people where they are and working in dialogue with trusted community leaders – has been proven effective time and time again for improving health equity. For example, the National Institutes of Health has highlighted the Balm in Gilead’s Memory Sunday program as a strategy for community-based faith organizations to educate their congregations on the warning signs of Alzheimer’s and dementia.
In the same way, Links2Equity partnered with community leaders to distribute flyers for educational programs on dementia in local barbershops and beauty salons. These informal community gathering places helped us reach those who may benefit from dementia awareness information but are disconnected from traditional patient advocacy networks. For families where caring for someone is just what you’re raised to do, self-identifying as a caregiver may never be on the table. Allowing people to receive the information in a way that doesn’t undercut their social and family relationships makes it easier to educate those in need.
Strategy 3: Elevate the Community’s Voice and Successes
Working with community-based organizations is a two-way street. As national leaders, it’s important to amplify the voices of the community itself. Sharing stories of success creates a ripple effect, inspiring others.
One way we sought to elevate the community’s work was to facilitate local conversations about the realities of Alzheimer’s disease and remove stigma about its impact on their capabilities. By inviting people who are living with dementia to share their stories with local leaders and other key stakeholders, we helped strengthen community bonds and increased awareness needed to support that community’s care infrastructure. Through this webinar series, Links2Equity witnessed a powerful moment when a community member entrusted her early-onset Alzheimer’s diagnosis to her pastor, a community leader participating in the project, and later shared her story to inspire and support others. A key goal of this work is to eliminate stigma through open and meaningful conversations about the disease.
Known community partners play a significant role in increasing the reach and accessibility of community-centered Alzheimer’s care.
Links Incorporated, one of the nation’s oldest and largest volunteer organizations specifically serving the Black community, exemplifies how organizations can transform communities through service. By working with their established presence, Links2Equity was able to extend the reach of our webinar series by exploring the unique challenges Black and Brown caregivers face when caregiving for individuals with Alzheimer’s disease.
There’s also success when community members become strong advocates. St. Pius Catholic Church only partners with non-profit organizations. So, to work with this community, Links2Equity took an individual outreach approach to church members, instead of creating a formal organizational partnership. Four members turned into leaders for bringing our education and awareness to the broader congregation.
If this policy holds true for all Catholic churches, partnering with a non-profit organization to engage with the church may facilitate greater access to Catholic church partnerships for future community engagement efforts. However, it also demonstrates the willingness of a community to engage when you work with cornerstone individuals and allow them to lead and be the drivers of success.
Connecting with national offices of community organizations can help you into pre-existing networks and may open doors to larger media or advocacy groups. Leveraging broader support networks, like NABVETS and the VA’s Caregiver Support Program, can provide more robust resources to community organizations that need more help.
As we approach the holiday season, let’s remember that Alzheimer’s disease doesn’t take a break. Our communities are often the first point of contact when individuals and families seek help. For underserved populations and communities of color, we must continue to engage people where they are with strategies that respect their language, culture, and communal ties.
