Being an avid follower of basketball, I remember the day Pat Summitt, the most winning basketball coach in the USA, disclosed she had been diagnosed with early onset dementia.
Pat decided to go public with a video where she explained her diagnosis
“Throughout my career, I’ve always made it a point that my life and our basketball program were an open book,” She explained that a visit to the Mayo Clinic revealed early onset dementia, Alzheimer’s type. She was 59. “I plan to continue to be your coach, and for that reason, I will be relying on my outstanding coaching staff like never before,” she added.
Summitt never considered stepping away from her job.
Summitt remained head coach for eight months —right through March Madness (College playoffs season) after which Pat moved into a new position as head coach emeritus, she would no longer manage the team during a game, but would focus on individual player development.
Pat was able to continue in the role that defined her as a person, a basketball coach, and her employer the University of Tennessee accommodated her transition and recognised that she still had value to add to their basketball program. Unfortunately, this is not the case for many who are diagnosed with dementia while still active in the workplace.
When Kate Swaffer, a busy lady, entrepeneur, nurse, student, mother and volunteer in Australia was diagnosed with dementia at the age of 49, she tells how "The medical model of care told me to give up work, give up study, go home and live for the time I had left. And on the way, get my end of life issues in order and get myself acquainted with aged care"
Kate says "one piece of good luck" came with her university studies at the time, the University of Wollongong offered the support that spurred a different view of her future.
"At university when I said to the lecturers 'should I give up studying?' they said 'don't be ridiculous, go to the disability advisor and we'll help manage the symptoms of dementia as disabilities'"
Kate has since completed a double Bachelor of Psychology and Professional Writing degree and further added a Master of science in Dementia Care to her resume.
Both Kate and Pat had support, Tennessee and Wollongong universities stepped up to the mark and put support structures in place which enabled them to continue their work/studies. These two ladies are still in the minority, in the UK alone, there is 42,325 people aged under 65 with dementia, many of whom continue to work following diagnosis, (Alzheimer's Society, 2014).
The Equality Act (2010) requires employers to avoid discrimination and make reasonable adjustments to ensure people with dementia are not disadvantaged in their workplace. Employers should provide appropriate support throughout the journey of a person with dementia. As the condition advances, employees will require information, advice and guidance about finishing work. The same support should be provided to people with dementia and carers who do not want to continue to work following a diagnosis. Today when a person is diagnosed with dementia, people who still have loads to give are often discounted, forced into retirement with a lack of meaningful activity to fill their lives and we watch a swift decline.
Most are aware of the rights we have as an employee if we become disabled, but many who receive an early diagnosis of dementia are unaware of their rights, and at the same time only a few employers are as supportive as described above. With more and more of us staying active in the working place later and later in life, addressing this becomes even more crucial. Working as a society to become dementia inclusive is more than dementia friends and red toilet seats, it’s recognising dementia as a disability and acknowledging as a society that we need to provide the appropriate support when needed.
Kate Swaffer a leading figure in the dementia world today. As the co-chair for Dementia Alliance International, she demonstrates how it is possible to maintain meaning and quality of life with dementia. Kate was a SA Finalist in the Australian Of The Year Awards 2016, winner of the 2015 National Disability Awards: Emerging Leader in Disability Awareness, winner of the 2015 Bethanie Education Medallion, and winner of the Stirling University 2015 International Dementia Leader Award. Kate is a member of the World Dementia Council, and was also a plenary speaker at the World Health Organisation First Ministerial Conference on Dementia in Geneva in March 2015, the first person with dementia ever to have given a keynote speech at the UN World Health Organisation.
Her first dementia book “What the hell happened to my brain?: Living beyond dementia” was released in January 2016 by Jessica Kingsley Publishers. Her second book about dementia, co-authored with Associate Professor Lee-Fay Low from Sydney is to be released in September.
Pat Summitt was an American college basketball head coach whose 1,098 career wins are the most in NCAA basketball history. She served as the head coach of the University of Tennessee Lady Vols basketball team from 1974 to 2012. She won eight NCAA championships (a women's record when she retired). She was the first NCAA coach with at least 1,000 wins. Pat also won two Olympic medals: a gold as head coach of the 1984 U.S. women's basketball team and a silver as a player on the 1976 team. She was named the Naismith Basketball Coach of the Century in 2000. In 2009, the Sporting News placed her at number 11 on its list of the 50 Greatest Coaches of All Time in all sports; she was the only woman on the list. In 38 years as a coach, she never had a losing season. In 2012, Summitt was awarded the Presidential Medal of Freedom by President Barack Obama and received the Arthur Ashe Courage Award at the 2012 ESPY Awards.By making her diagnosis public while she was still active in her high profile job. Pat Summitt, who brought much needed attention to the issue and the discussion around dementia, died on June 28, 2016.