Pat Summitt will be remembered nationally as an amazing athlete, basketball coach, and awareness advocate for early-onset Alzheimer's disease.
Pat Summitt will be remembered nationally as an amazing athlete, basketball coach, and awareness advocate for early-onset Alzheimer’s disease. (For Spectrum Health Beat)

If you follow college basketball, you’re no doubt familiar with the remarkable story of Pat Summitt, the celebrated former head coach of the University of Tennessee women’s basketball team.

Summitt died on June 28, five years after being diagnosed with early-onset Alzheimer’s disease. She was 64.

Summitt’s coaching career was the stuff of legend. Besides leading the Lady Volunteers to eight national championships in her 38 seasons, she won more games than any other Division I coach—male or female—in college basketball history.

Equally impressive, 100 percent of the players who completed their eligibility with her graduated.

In the wake of Summitt’s death, Health Beat spoke with Katie Scott, PhD, a neuropsychologist with the Spectrum Health Medical Group, to learn more about early-onset Alzheimer’s.

Dr. Scott said people should know these 7 facts about the disease:

1. Alzheimer’s disease, whether its onset is early or late, is a type of dementia.

Other diseases under the dementia umbrella include vascular dementia, frontotemporal dementia and dementia with Lewy Bodies. Alzheimer’s is the most common type.

2. Early-onset Alzheimer’s refers to cases in which symptoms appear before age 65.

In Summitt’s case, her diagnosis came at age 59. She stepped down from coaching eight months after announcing her diagnosis.

3. Early-onset Alzheimer’s is much less common than the later-onset form of the disease.

“The general consensus is that about 5 percent of people who are diagnosed with Alzheimer’s disease have the early-onset form,” Dr. Scott said. It’s much more typical to see the disease emerge in patients in their late 70s or early 80s.

4. The early-onset form of Alzheimer’s has a stronger genetic component than the later-onset form.

People with a family history of early-onset Alzheimer’s disease may be more likely to experience early-onset Alzheimer’s themselves, Dr. Scott said. On the other hand, when there’s a family history of later-onset Alzheimer’s, “we tend to think of that as less likely to be genetically driven.”

And yet, it remains an unpredictable disease. “When you see a very healthy individual who has developed a disease like this,” Dr. Scott said, referring to Summitt, “it just makes it all that much more clear that there’s often so little rhyme or reason why this strikes certain individuals versus others.”

5. Research suggests that people who have early-onset Alzheimer’s tend to have a faster rate of decline.

“The numbers we typically talk about for the later onset Alzheimer’s disease is a 10-year period of progression,” Dr. Scott said. For patients with an earlier onset, doctors generally agree that the rate of decline is faster, though the time frame varies widely.

“So for those of us in the medical community, the progression for Pat Summitt was very unfortunate, very sad, but not particularly surprising, given the early onset of her illness,”
she said.

6. The symptoms of early-onset and later-onset Alzheimer’s are similar.

The difference between the two forms of the disease is simply when the symptoms begin. Although the symptoms can vary from patient to patient, these are some early signs of cognitive decline from Alzheimer’s:

  • Difficulty learning new tasks
  • Loss of interest in hobbies, lack of interest in social events and decline in mood, especially in people who haven’t had trouble with their mood before
  • Frequent forgetting of conversations or repetition of questions
  • Changes in language skills, such as having trouble thinking of the right word or using unusual phrasing rather than an object’s real name
  • Difficulty with routine tasks, such as finding familiar locations or finishing everyday projects

7. Help is available for patients and their families.

Although science hasn’t yet found a way to reverse the changes that people with dementia experience, health care specialists in the neurosciences have many resources and techniques to help patients and their families, Dr. Scott said.

“Particularly early on in the disease progression we can help with different ways of coping and compensating for things that are becoming more difficult for them,” she said.

By being able to differentiate among the forms of dementia, Dr. Scott and her colleagues can also help patients understand the progression of their specific disease and know what to expect.

This can at least give people a measure of control over a disease that robs its victims of so much.