Pat Summitt, the iconic University of Tennessee coach who has the most wins in the history of college basketball, came forth last month with a statement that stunned her colleagues and fans. At 59, the woman who led the Lady Vols to a record eight championships during 38 seasons, has been diagnosed with early onset dementia, Alzheimer's type.
Her fighting spirit clearly still intact, she wrote a letter to the university community that was quoted in U.S.A Today as saying: "I plan to continue to be your coach. Obviously, I realize I may have some limitations with this condition since there will be some good days and some bad days. For that reason, I will be relying on my outstanding coaching staff like never before."
Those are brave words. Yet as is true for anyone who gets Alzheimer's before the age of 65, Summitt will face significant challenges. People at midlife typically are in the prime of their careers and still have financial responsibilities. Many have children at home. Also, although statistics are not firm, the strong perception in the medical community is that the disease progresses more rapidly in younger sufferers.
What is definitely known is that the early onset variation is inherited. Fortunately it is also rare. Of the estimated 5 million people in this country who have Alzheimer's, only about 5% contracted it while still young. The average age of this kind of case is 45, but cases of patients in their 20s have been reported.
If early onset dementia runs in your family, you may want to consider genetic testing. This is the only form of Alzheimer's for which there is currently a reliable test. However, many experts point out that knowing ahead of time that you will probably develop Alzheimer's may cause more stress than necessary. Other experts disagree, though, and say that people who learn they have the Alzheimer's gene may become more determined to live an active, healthy lifestyle and possibly forestall or even prevent the onset of the disease. Also, those who have advance notice of their chances of contracting dementia can get their affairs in order, make sure they have a will, and consider long term care insurance. (Actually, those tips go for all of us.)
Summitt has told the media that she knew something was wrong when she began forgetting plays during games. She also told The Knoxville News Sentinel that her grandmother had severe dementia. Wisely, Summitt didn't wait long before she went to the Mayo Clinic in Rochester, Minnesota for an examination. There is no cure for Alzheimer’s, and it is eventually fatal, but various medications can help control symptoms.
The Alzheimer's Association lists 10 warning signs:
1. Memory loss that disrupts daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks at home, work, or leisure
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking and writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality
The National Institute on Aging endorses the following drugs to give people with Alzheimer's "comfort, dignity, and independence for a longer period of time" and also to "encourage and assist their caregivers."
For mild to moderate cases:
Cholinesterase inhibitors including Razadyne® (galantamine), Exelon® (rivastigmine), and Aricept® (donepezil). Cognex® (tacrine), the first approved cholinesterase inhibitor, is almost never prescribed today because of safety concerns.
For moderate to severe cases:
Namenda® (memantine), an N-methyl D-aspartate (NMDA) antagonist, and Aricept® which is mentioned above.
We wish Pat Summitt the best as she faces down her most formidable foe yet. We also applaud her courage in making her diagnosis public. The fact that someone as well known and as admired as Summitt has put a personal face on a dreaded disease will go a long way toward increasing awareness of the problem and perhaps even inspire more research.
Summitt, who wrote two well-received motivational books, has been quoted as saying: "We're facing a new opponent and trying to learn as much as we can." With that philosophy, we have no doubt she'll stay in the game as long as anyone possibly could.
Sondra Forsyth, Senior Editor at ThirdAge, is a National Magazine Award winner. She writes for major magazines and is the author or co-author of eleven books. She was Executive Editor at "Ladies’ Home Journal," Features Editor at "Cosmopolitan," and Articles Editor at "Bride’s." A former ballerina, she is the Artistic Director of Ballet Ambassadors, an arts-in-education company in New York City.