The effects of Alzheimer’s disease and dementia are particularly devastating to Milwaukee’s Black, Latinx, Asian and Native populations, says Dr. Nia Norris, PhD, assistant director of the Wisconsin Alzheimer’s Institute (WAI) Regional Milwaukee Office.
Because of that, Norris adds, more participants from communities of color are needed for the WAI’s ambitious and ongoing Wisconsin Registry for Alzheimer’s Prevention (WRAP) study, the world’s largest such research program. “Retention of research participants in WRAP is vital to unlocking the answers of why communities of color are at a higher risk of developing the disease,” she explains.
Connecting in MKE
Milwaukee is home to more than 255 of the state’s 1,500 participants in the WRAP study, which tracks health and lifestyle factors that potentially impact dementia. Some have been enrolled in the study since its 2001 inception.
The WAI Regional Milwaukee Office was established in 2008 by Dr. Mark Sager to address the disparate conditions of Alzheimer’s disease in the Black community through improved access to culturally competent care and diagnosis. It is now led by Gina Green-Harris, director of the University of Wisconsin Center for Community Engagement and Health Partnerships in Milwaukee, while Norris leads outreach and research programs in Milwaukee and Southeast Wisconsin communities and develops partnerships to support programs that assist the underserved and underrepresented.
The office conducts research visits at the Aurora Sinai Outpatient Health Center on North 12th Street as one of three sites for the WRAP study. In 2020, the WAI partnered with the Medical College of Wisconsin to offer MRI biomarker research visits to participants as another component of WRAP, Norris says.
“Our office also provides comprehensive services and support for individuals living with dementia and families in need of assistance as they navigate the caregiving journey,” she says. “We foster partnerships to deliver culturally appropriate education, training and outreach programs to providers, individuals living with dementia and family caregivers. [We] build rapport with the community and increase knowledge about services and support, ethical research practices and research opportunities for community members.”
The work is making inroads into the community and has become a national model replicated across the county, she notes.
A major obstacle in the recruitment process is the mistrust of Black, Latinx and Asian communities of health care in general, which leads to a reluctance to participate in research studies.
In the national 2021 Alzheimer’s Association Facts and Figures report issued in March by the Alzheimer’s Association, 36 percent of Black Americans, 19 percent of Asian Americans and 18 percent of Latinx Americans believed discrimination would be a barrier to receiving Alzheimer’s care.
“Our work to improve health outcomes within underrepresented communities must be elevated to a top priority,” said Green-Harris in a news release. “To achieve positive health outcomes in these communities, it’s essential that we meet people where they are, gain their trust, and provide culturally appropriate medical care and opportunities for research.”
The report emphasizes that socioeconomic disparities in health care and systemic racism contribute to increased Alzheimer’s and dementia risk in communities of color. Blacks and Hispanics are disproportionately more likely to have Alzheimer’s disease and other forms of dementia, the report shows, noting that both groups are more likely to have missed diagnoses than older Caucasians.
A Personal Stake
Norris, a Milwaukee native, has deeply personal experience with the impact of Alzheimer’s.
“My experience with dementia began in 2008 when my paternal grandmother was diagnosed,” she explains. “My family had to quickly navigate the caregiving journey and had no previous understanding of this illness. Since then, my maternal grandmother was diagnosed with dementia, and now I assist my family with caregiving for her.”
She says her work with the WAI and WRAP over the past 12 years has been an enormous influence in understanding how Alzheimer’s disease affects communities of color, specifically Blacks. “This experience also led me to pursue a doctoral degree, and my dissertation focused on identifying motivating factors for participation in Alzheimer’s research,” Norris says.
Because of that increased risk for dementia for the Black community, the WAI Milwaukee office focuses on five areas: community outreach, professional education, advocacy, service and research. “These areas serve to empower communities of color — primarily African Americans — by providing culturally specific health care services for its aging populations affected by dementia, Alzheimer’s disease and other health disparities,” Norris says.
Local partners in the program have included the Aurora Sinai Medical Center, Center for Urban Population Health, Milwaukee Health Services, United Community Center, Milwaukee County Department on Aging, VITAS Healthcare, Black Health Coalition of Wisconsin, the Medical College of Wisconsin, the UW All of Us research program and faith-based organizations.
“They’ve been instrumental in spreading awareness about dementia and Alzheimer’s disease, supporting recruitment for WRAP, and continue to be key partners,” Norris says, adding appreciation for funding support by Bader Philanthropies, Greater Milwaukee Foundation and the Wisconsin Geriatric Education Center over the years.
The Dementia Wellness Project
One of the office’s most notable initiatives is the Dementia Wellness Project, led by Senior Outreach Specialist Stephanie Houston, Dr. Carla Wright, MD, and Teresa Skora, nurse practitioner at Milwaukee Health Services, Norris says.
“It’s an outreach education and supportive service intervention to improve diagnosis and delay the onset of dementia in African American seniors in Milwaukee,” she details. “We brought a physician, nurse practitioner, medical assistant, outreach worker and UW student interns into senior community living settings to provide talks, health screenings, support services, group education and lifestyle classes to seniors.” The team performed one-month and three-month follow-ups with the seniors to assess behavioral and health changes.
The results, she says, included a deeper expansion of community education and outreach, a dozen community screenings with more than 160 participants, and the ability to provide seniors with local resources for recreation at senior centers, food, transportation, and assistance in accessing prescriptions, long-term care and information on Alzheimer’s and related dementia.
Dementia and Caregiver Support
The WAI Milwaukee’s signature program is The Amazing Grace Chorus, established in 2014, Norris says.
Funded by Bader Philanthropies and led by Stephanie Houston, the chorus is a Milwaukee-based, diverse chorus made of persons living with dementia and their caregivers, she explains.
“This program aims to increase social engagement through socialization and music,” Houston enthuses. “[It] engages underrepresented populations to increase public awareness of the importance of understanding how to help families living with dementia.”
Currently, 16 families participate in the chorus. Due to COVID, rehearsals take place virtually as of May of 2020, which also allowed former members who moved out of state to return to the chorus.
And the community input and participation extends further into Milwaukee.
The WAI’s Community Advisory Board (CAB) — comprised of family caregivers, WRAP participants, community gatekeepers and people living with dementia — has also recommended ideas and insight on recruiting participants from underrepresented populations, Norris says. The CAB counsels the UW and WAI on the development of culturally sensitive outreach and research recruitment strategies.
And every April since 2014 (in honor of Minority Health Month), the WAI Milwaukee office has held an annual event called “Breaking the Silence: Addressing Dementia in Communities of Color.” Though the program was postponed in 2020 due to the pandemic, it returned virtually this year.
The aim of the event, Norris says, is to broaden awareness of the effects of dementia in those underrepresented communities.
“It’s our hope that individuals and families feel empowered, receive information surrounding the health of communities of color and share their knowledge with others to take charge of their health and get access to the services they need,” Norris says. Find it online at wai.wisc.edu/event/bts2021. MKE
Alzheimer’s Disease’s Wisconsin Impact
According to the Alzheimer’s Association 2021 Facts and Figures report, the most recent updates on the disease in Wisconsin include:
- Number of Wisconsin residents aged 65 and older living with Alzheimer’s: 120,000
- Estimated number of Wisconsin residents living with Alzheimer’s in 2025: 130,000
- Percentage change 2020-25: 8.3 percent
- Statewide deaths from Alzheimer’s disease (2019): 2,390
- 881 more deaths than expected from COVID-19 — 15.8 percent higher than national average
- $777 million in Medicaid costs of caring for people with Alzheimer’s in 2020 (projected increased change in 2025: 18.9 percent)
- $23,317 per capita Medicare spending on people with dementia (in 2020 dollars)
- Number of Wisconsin residents serving as unpaid family caregivers: 196,000
- Total hours of unpaid care provided: 204,000,000
- Total value of unpaid care: $3,386,000,000
- 2020 caregiver stats: 57 percent suffer chronic health conditions, 17.8 percent suffer depression, and 10.7 percent are in “poor” physical health