The Long Goodbye: Alzheimer's and African-Americans

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"The long goodbye" is a phrase Nancy Reagan used some years ago to describe the process she and her family were experiencing as the late president Ronald Reagan battled Alzheimer’s disease. It’s a sad and highly appropriate term because Alzheimer’s is a progressive, degenerative disease that kills very slowly. As the disease develops, brain cells die destroying short and long term memory of people, places and events. In the final stages of Alzheimer’s, even the neuro–response system that controls automatic bodily functions like respiration is affected.

Illness always touches a wide circle of people as well as the patient. Entire African–American families suffer along with the patient. With Alzheimer’s the impact of the disease can be especially harsh. Because the disease progresses so slowly in most people, Black families witness a steady decline in the patient’s ability to recall names and faces of relatives and friends and the names and functions of simple household objects. Patients can become frustrated and angry at their declining capabilities to conduct even small tasks like feeding themselves or tying their shoes. They frequently lash out at family members and caretakers and often become sullen or argumentative. Since physical decline occurs later than mental decline, patients are often fit enough to become confrontational and combative or so confused that they wander off, often leading to the need for restraint or institutionalization.

Alzheimer’s has only recently been formally classified as a disease. For years in the Black community, it was thought of as "old–timer’s disease." People considered senility and dementia as a natural part of the aging process. We now know that Alzheimer’s has its own unique characteristics and that not everyone who is senile has the disease.

Aggressive research is underway to identify the cause of Alzheimer’s and links have been drawn to heredity, genetics and environmental factors. African–Americans seem more susceptible to the disease than other groups according to recent medical research.

High cholesterol levels and rampant hypertension in the Black community pave the way for vascular incidents like heart attack and stroke. But this deadly combo also seems to be a precursor to Alzheimer’s since people with a history of either condition are twice as likely to develop the disease.

Cultural and socio–economic factors may also be a factor in high incidences of the disease among Blacks. African–Americans consistently have less access to quality health care than other Americans and many Blacks elders have strong distrust of doctors and medical facilities due to centuries of discrimination and horrific acts of betrayal like the Tuskegee Experiment.

Because some research has shown Alzheimer’s to be anywhere between 14 and 100% more prevalent among Blacks than whites, prevention and control of vascular risks like hypertension and high cholesterol is critically important. If there is a family history of the disease, early screening for Alzheimer’s is also vital.

Once the disease has been diagnosed, families and caretakers of Alzheimer’s patients should be aggressive about seeking help. Caring for an Alzheimer’s victim can be a full time job that may require institutionalization. Family values and deep cultural traditions prevent many African–American families from considering institutionalization as an option for loved ones. But remember, you will be serving their best needs by ensuring that your relative is receiving the best possible professional care in the most appropriate setting. At minimum, Alzheimer’s families should seek out resources like respite care, discussion and support groups and other helping services from their local hospital or health care center.

The tragedy of Alzheimer’ does set the stage for a "long goodbye," but stress, anxiety, fatigue and frustration can be minimized for African–American families with education preparation and support.

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