By LUCILLE RIDGILL
Alzheimer’s disease (the most common type of dementia) is the 6th leading cause of death among White people, but the 4th leading cause of death for Black people like me. The Black population age 65+ is projected to more than double in size in the next 10 years, which means dementia diagnoses in our community also could more than double in number.
Dementia is called a “silent epidemic” among Black people because many of us refuse to acknowledge or discuss this horrific disease. As a physician who has a close family member who was recently diagnosed with dementia, I feel the great loss of the ever-decreasing communication with my loved one and that is very painful.
Its increasing toll is also due to untreated or inadequately treated hypertension and diabetes causing vascular dementia. This occurrence is due to the progressive destruction of the vascular supply. The disease progresses slowly so that family members and physicians are shocked when it becomes apparent.
Unfortunately, there’s not much you can do to prevent Alzheimer’s at this time, but you can check your glucose and blood pressure regularly and take anti-hypertensive and diabetes medications as prescribed to delay or prevent vascular dementia. It is important to make sure family members understand their susceptibility and take action as necessary. Failure to do so can lead to delayed medical care and caregiver burnout of family members.
That’s why this conversation began last month – it is important for Black people to use Alzheimer’s And Brain Awareness Month as inspiration to remedy this situation.
One major reason Black people suffer disproportionately from Alzheimer’s is we are underrepresented in dementia research, in part because many of us are unwilling to donate our brains to research or participate in brain studies due to distrust of the medical system. The good news is that this problem is dissipating as more physicians and health care workers of color enter the health care system.
Another reason is Black people suffer disproportionately from diseases linked to a higher risk of dementia, including high blood pressure and type 2 diabetes. It is no coincidence that two-thirds or 67% of my Medicare patients suffer from vascular and Alzheimer’s disease, 71% have diabetes and 75% have high blood pressure.
The Black community must demand that lawmakers significantly increase financial resources to reduce dementia among people of color, but we also must take personal responsibility for improving our eating habits and lifestyle to reduce our susceptibility to it. If fresh fruits and vegetables are not available where you live, you can buy them at the increasingly available farmers market or grow them in your own garden, increasing your exercise activity, while providing you with good, healthy food.
However, since dementia is incurable, we also must do advance planning for the care we would want in case we get dementia, so we don’t have to suffer needlessly by involuntarily receiving treatments we don’t want to artificially extend our life during the last, most debilitating stages of dementia. For example, when we have lost everything that matters to us: the memory of loved ones, of our life, our identity, and the ability to speak.
In fact, people with dementia may endure implanted defibrillators, mechanical ventilation, feeding tubes, and other invasive interventions – all given with the intention to extend life – but often at a cost of diminished quality of life and prolonged suffering.
Even seemingly simple treatments like chest x-rays, urine samples – which often require bladder catheterizations, blood draws, and hospital transfers may become uncomfortable and invasive for cognitive impairment.
The health care needs of people with dementia at the end of life are unique and require special consideration. It is also important to discuss important life challenges caused by dementia of any sort earlier in the disease process so you can address important end-of-life care decisions and family business. Request an appointment with your physician and attorney.
In addition, a national profit organization, Compassion & Choices, has created a Dementia Values & Priorities Tool to facilitate this care planning process. This free, fully customizable tool walks you through 15 common symptoms of dementia and helps you to identify if and when your goal for care may change from “do everything possible” to “allow for my natural death.”
Creating a dementia-specific advance care plan relieves the burden from loved ones and/or the health care proxy to make difficult decisions when you can no longer speak for yourself. A complementary tool, the Dementia Decoder allows you or a health care proxy to indicate the current status of your dementia diagnosis, specify what you or your health care proxy hope to learn and accomplish from an upcoming clinical appointment and customize that experience from a list of helpful questions.
Take it from a physician of color repeatedly heartbroken from watching many patients suffer needlessly from dementia: it is infinitely better to plan for your care for dementia and not get it than it is to not plan for your care for dementia and get it.
Dr. Lucille Ridgill is an internist and primary care provider for adults in Rancho Palos Verdes, California.