WASHINGTON — Pat Summitt was a leader in life. And in death, she is again drawing attention to the brave struggles facing many middle-aged Americans diagnosed with early onset Alzheimer’s disease.
Summitt was the legendary coach of the University of Tennessee’s Lady Volunteers and had the most wins of any coach in NCAA history, male or female.
She was at the peak of her game when she started having memory lapses, and learned she had dementia at the age of 59 in 2011.
Summitt became part of a relatively rare subgroup of Alzheimer’s patients diagnosed in midlife.
“There are 5.2 million people age 65 and older with Alzheimer’s disease and about 200,000 individuals under the age of 65,” said Brigid Reynolds with the Memory Disorders Program at Georgetown University.
Most of these younger patients, like Summitt, were diagnosed in their 50s, at a time when they had substantial family obligations and established careers.
She faced it head on, speaking out about the disease and starting the Pat Summitt Foundation to build awareness and raise money for research.
At medical centers across the country, including Georgetown, scientists are seeking to unravel the mysteries of Alzheimer’s, looking for possible genetic links, and searching for a cure.
Reynolds says one of the areas they are exploring is life expectancy. While most Alzheimer’s patients live for four to eight years after diagnosis, some live as long as 20 years with the disease.
“We need more research to better understand the risk factors associated with what are the more aggressive forms of Alzheimer’s disease,” she said.
The Centers for Disease Control and Prevention says Alzheimer’s is the sixth-leading cause of death. It is a brain disorder that doesn’t kill directly, but eventually renders its victims bedridden, unable to perform even basic body functions like swallowing. That can result in infections such as pneumonia and other life-threatening complications.
In its earliest stages, Alzheimer’s can be difficult to diagnose — especially in younger patients.
“It isn’t something that clinicians are necessarily looking out for,” Reynolds said.
Still, there are telltale signs that should warrant a full clinical evaluation. One is obvious: memory loss. That doesn’t mean you should worry if you lose your keys, but it could be a sign of trouble if you can’t retrace your steps to look for them.
Reynolds says repetitiveness is another early symptom of Alzheimer’s: “Someone repeating the same story or repeating the same question.”
The Alzheimer’s Association offers support groups for caregivers of people with — what it calls — “younger onset” Alzheimer’s and social groups called “Memory Cafes” for people just starting to deal with the disease.
The association refers to cases involving patients under 65 as “younger onset” to avoid confusion with the early stages of the disease when a person may be able to function independently while having memory lapses.
