Her story, like the stories of all those diagnosed with early onset is especially heart wrenching. There is something still so odd about someone getting a diagnosis of dementia in their 60’s or even 50’s as Pat did. Something not quite developmentally appropriate; our 50’s are typically years when we rise to our peak and dominate, as Pat did. We become the experts and coach others, as Pat did. We receive accolades for jobs well done, as Pat did (the Presidential Freedom Award and the Arthur Ashe Courage Award to name a couple). It is our time to be top on our game, as Pat always was. It just doesn’t seem right to be having to step down because we can no longer handle the rigors of thought that our well-planned careers ask of us, as Pat did. To have care needs that require a specialized care setting, as Pat’s eventually did. Or most sadly, dying from dementia at 64, as Pat did. None of it seems right at all.

The current estimates are that approximately 5% of the more than 5 million Americans with Alzheimer’s disease were diagnosed under the age of 65, the cutoff age for the “early onset” diagnosis. That means that somewhere between 200-250,000 Americans are living with dementia in the prime of their adulthood. In her final act of leadership, Pat has stood tall as we followed her in her journey with this disease. In the beginning, she remained at her job and worked with the disease—only to be asked to leave, not on her terms when she decided to. Her honesty about her disappointment in this decision only furthered her champion status in most minds. As the winningest college coach of all time, with just shy of 1100 victories and 38 years on the job and only a short time after revealing her diagnosis, she stepped down and began the fight of her life.

At Brookdale, we are reminded every day as we serve our 589 or 4% of residents living with us in our Clare Bridge Program who are age 70 or younger, that this disease can affect many who are not considered “old”. With these residents, sometimes their family members can easily still be in their 20s and just starting out on their own; caring for Mom or Dad has become an unexpected part of their post-college plans. This is the reality of early onset Alzheimer’s and dementia. The demands of coping with Alzheimer’s are tough on any family, but a diagnosis of early onset can bring its own special set of challenges. There may be greater financial and occupational implications if the person is a pre-retirement age breadwinner, there may be challenges to the roles in the family if the person is still an active parent of younger children, and there may be a greater risk of isolation from friends and social groups due to stigma because the person is so young and the disease is misunderstood. The diagnosis itself may be difficult to obtain. According to the Alzheimer’s Association, age and a lack of medical history can contribute to Alzheimer’s disease being easily overlooked as a possible cause of symptoms in someone in their middle age.

I would like to think that at any age, Pat Summitt would’ve taught us much about how to live with Alzheimer’s disease. She was a true role model and leader and faced this disease and all that it brought to her life with that famous championship spirit. Although Pat received her diagnosis a little more than 5 years ago, she has had an enormous impact as an advocate. She established The Pat Summitt Foundation in November of 2011 which has as its mission “a dedication to advancing research for prevention and a cure; to provide hope, care, and critical support for patients, caregivers and families; and to educate the public on the impacts of Alzheimer’s disease and the urgent need for a cure”. More recently, she also launched the Pat Summitt Alzheimer’s Clinic at the University of Tennessee Medical Center which is set to open in December 2016. 

We thank Pat for her tireless dedication to living life to its fullest, for her leadership both on and off the court, and for sharing her story so that others can live better lives, more fully understood with early onset Alzheimer’s. Even in times that defy logic, we at Brookdale have embraced a sense of understanding that lives here every day. Not acceptance. Not submission. Not defeat. But a pledge to understand, to care, to fight and – as Pat did – to win, every day.

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