Importance of early detection of dementia in the Black community 

Many people show early signs of dementia such as memory loss, but their families hesitate to talk to their primary care clinician about their symptoms. They assume that such symptoms are just a sign of getting old, or are fearful of the diagnosis of dementia or are in denial. For these, and sometimes cultural reasons, many of those who are elderly in the Black community have a delayed diagnosis of dementia, such that it has progressed to the point that they need in-home or nursing home care. It is usually a family member who brings their loved one in to see the doctor, but by then most patients have had symptoms for 2-3 years. To ensure early detection of dementia, family members are especially crucial to provide a ‘history’, or story of the symptoms at each clinic visit, as the patient cannot provide a reliable history.

More than six million Americans are living with Alzheimer’s disease or other types of dementia. However, Blacks in the U.S. have about twice the risk of developing dementia compared with non-Hispanic Whites. According to Alzheimer’s Association, 21 percent of older Blacks in the U.S. are living with dementia. Recent research indicates that this increased risk of dementia is likely due to a combination of the higher prevalence of cardiovascular and cerebrovascular (brain) disease and associated risk factors, such as high blood pressure, diabetes, and high BMI (body mass index), as well as social determinants of health, and some genetic factors.  

Dementia is the ‘umbrella’ or general term for a progressive brain disease that usually begins with apathy—not caring about previously enjoyed hobbies, reading or activities. It can manifest in symptoms like memory loss about recent events and difficulties with finding the right word, planning, and making decisions, which combined, eventually make it difficult for a person to perform daily activities independently. Apathy combined with word- finding problems can lead to withdrawal from social situations. Families may misinterpret apathy as laziness or disinterest, creating anger and misunderstanding, and delaying dementia detection and diagnosis.

Alzheimer’s disease is the most common single cause of dementia. But the most common dementia overall is due to a combination of Alzheimer’s disease and vascular cognitive impairment, which is usually due to small blood vessel damage (or microvascular disease) in the brain, or less commonly, due to strokes. This microvascular disease is often due to chronic high blood pressure alone or in combination with diabetes, chronic kidney disease and associated inflammation.

The under-detection or delayed diagnosis of dementia leads to many missed opportunities—specifically, for medication supervision to ensure the affected family member is taking their medications correctly—thus avoiding unnecessary hospitalizations and missed opportunities to plan for caregiving and care transitions. A delayed dementia diagnosis can also mean missed opportunities to be treated with current or recently released dementia medications, or to enroll in ongoing clinical trials to potentially slow dementia progression. This is especially important as Black patients have a low rate of participation in clinical studies and trials for many reasons. The NIH National Institute of Aging has recognized this and is emphasizing the importance of enrolling Black participants. The bottom line is—if you or a family member has memory or cognitive problems, don’t delay seeing your primary care provider, or ask for a referral to a dementia expert such as a geriatrician or neurologist to conduct a cognitive evaluation. Denial and delay can only lead to worse care and outcomes for the patient and family.    

Healthy aging research

Participating in the new Healthy Aging in the Senior Years—or HATS study—offers a new opportunity to help advance research in dementia in the Black population. The HATS study is designed to identify risk factors for dementia in Black patients to help prevent dementia, and to help with early detection of cognitive impairment and dementia. The study is a five-year observational study—not a clinical trial, so no medications will be given—that will measure cardiovascular and other risk factors for dementia in Black community members 55 years and older in the Twin Cities. It is a collaborative study between Dr. Anne Murray and the Berman Center, part of the Hennepin HealthCare Research Institute in downtown Minneapolis, Dr. David Knopman and the Mayo Clinic, and two community engagement partners, HueMan and the Lync. Both partners have been critical in informing the HATS study design, build community trust, and grow enrollment.

You don’t have to have memory problems to participate in HATS! Our goal is to enroll a broad spectrum of older Black people—from those having no symptoms, to early or moderate dementia. The HATS study will see participants every 15 months for 5 years, and measure cognitive function, physical function (gait speed, grip strength- both can predict risk of dementia), general health measures (blood pressure, weight, BMI) and collect blood samples to measure cholesterol, and the new research dementia blood biomarkers that in the future may provide early detection of dementia.

To be eligible for HATS, you must be 55 years and older, self-identify as Black, reside in the metro Twin Cities area, speak English as your primary language, and not have severe dementia (or be unable to participate in memory tests).  HATS researchers also request that each participant have a study partner who knows them very well (family member, close friend, caregiver), to provide a history of the participant’s symptoms. Healthy Aging in the Senior years participants and their study partner will be compensated for their time and contributions to science. The HATS study has been funded by philanthropic funds from the Mayo Clinic Rochester.  HATS is actively enrolling. If you would like to inquire about or enroll in HATS, please call 612- 449-5347, or email HATSstudy@bermancenter.org. By participating you will directly contribute to dementia research in the Black community.

Dr. Anne Murray is an MD and MSC Epidemiologist and is affiliated with Hennepin Healthcare and Hennepin HealthCare Research Institute.