What President Reagan did for Alzheimer's disease in general, legendary basketball coach Pat Summitt is doing for early onset dementia-Alzheimer's type in particular. Every time news hits about Summitt -- not about her victories with the University of Tennessee women's basketball team, but about her fight with dementia -- it's a win for the cause.
The "win" couldn't have come at a better time, as the government is crafting the first-ever national plan to address Alzheimer's disease. The plan includes long-overdue attention to young-onset Alzheimer's disease, a rare form of the brain disorder that affects people under age 65, even those in their 30s and 40s.
The nation's view of Summitt as someone more than a sport legend began last May when the Hall-of-Famer, at the age of 58, announced that she had been diagnosed with early-onset dementia of the Alzheimer's type (also called young-onset Alzheimer's disease) and again this past week not once, but twice. First, when the University of Tennessee announced that Summitt would be stepping down from her 38-year reign as head coach of the Lady Vols to become head coach emeritus, and second, when President Obama disclosed that he will be awarding her the Presidential Medal of Freedom later this year.
The president was right on the mark as he alluded to Summitt's readiness "to speak so openly and courageously about her battle with Alzheimer's disease." Her candor is akin to moving the disease from the bleachers to courtside.
Summitt's son, Tyler, in a heartfelt guest column in the spring 2012 issue of care ADvantage, a caregiver magazine published by the Alzheimer's Foundation of America (AFA), noted that the first month post-diagnosis "... was sad ... However, once we came to terms with it, we picked ourselves up and developed a game plan."
A huge part of their proactive agenda is working on the coach's mental, physical and spiritual health. An even huger part is being public about her illness.
"We knew that God had something bigger in store for my mom than just coaching basketball," wrote the 21-year-old college student, who is assisting his mother with the newly-formed Pat Summitt Foundation.
It can take a lot to be candid about the disease, whether a celebrity or not. And especially when the disease strikes at a younger age; young-onset Alzheimer's disease currently affects about a half million of the estimated 5.1 million Americans with Alzheimer's disease, and it is often less likely to be properly diagnosed.
Stigma and denial continue to surround the brain disorder, stifling the willingness of people to admit to warning signs and to discuss concerns with their families and friends, let alone their doctors. Research shows general practitioners miss about 50 percent of all cases of dementia.
Reversing this negativity is crucial to quality of life. Available medications, lifestyle changes, caregiver support services and the ability to do long-term planning are lifelines for coping with this terminal disease. And they can only kick in when a family acknowledges, confirms and confronts the horrific beast before them.
Summitt's emergence as a role model, particularly for the young-onset population, comes at a critical time for the cause. The U.S. Department of Health and Human Services (HHS) is working toward a mid-May release of its national Alzheimer's plan, which includes the goal of preventing and effectively treating Alzheimer's disease by 2025. This past week, the HHS-appointed Advisory Council on Research, Care and Services approved comprehensive recommendations that it hopes will be folded into the historic plan.
Worthy of note, the recommendations position young-onset Alzheimer's disease front and center. For example, in suggesting that HHS kick off a nationwide public awareness campaign to increase awareness and to promote early detection of Alzheimer's disease, the council emphasizes that the campaign should include "specific efforts in diverse communities and populations, including younger-onset individuals and persons with intellectual disabilities."
Further, recommendations include opening the floodgates so that younger individuals are not aged out of federal benefits for Americans 65-plus. Among them, it calls for special and emerging populations of people with Alzheimer's disease, including younger people and people with developmental disabilities such as Down syndrome, to have access to long-term support services, and that these supports are tailored accordingly. It further calls for expanding Older Americans Title III services, such as respite care and adult day services, to the young-onset population.
As disheartening as it was to hear that Summitt had been diagnosed, just like it is for each and every person -- well-known or not -- who faces the same fate, the silver lining in the cloud appears when greater good can result.
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