Thousands of people provide exceptional care to people who have Alzheimer’s disease or another form of dementia. Others are strong advocates for improving their quality of life. Even so, some people stand out from the crowd. Here are the people we believe should be honored in an International Alzheimer’s / Dementia Hall of Fame.
Richard Taylor, PhD (1943-2015) R.I.P.
Dr. Taylor, then a practicing psychologist, was diagnosed in 2001 with “dementia, probably of the Alzheimer’s type.” He was only 58 at the time. He began keeping a daily journal to better understand for himself what was going on inside his mind. Five years later, that journal turned into his first book, Alzheimer’s from the Inside Out [affiliate link]. Knowing first hand what it’s like to live with Alzheimer’s, Richard found a new purpose in life as a strong public advocate for the millions of people living with his disease.
Update: Richard passed away July 25, 2015.
RIP Richard Taylor. You will be missed … greatly. You opened our eyes and our hearts to the needs of everyone with “dementia, probably of the Alzheimer’s type.”
I first became aware of his special cause through his book “Alzheimer’s from the Inside Out” and subsequent videos. And, I was most pleasantly surprised when he reached out to me via Skype a few years ago.
During that and a subsequent phone call I let him know that his cause had also become mine, with one exception: As my purpose in life, I broadened his cause into one of advocacy for everyone near the end of their lives, whether because of dementia, frailty or other medical conditions.
All lives matter … Period! There are no second-class citizens. There are no disposable people. Everyone, regardless of physical or cognitive disability, is entitled to seek, and find, meaningful self-fulfillment in their lives … reasons to look forward to each and every new day … indeed, reasons to live … instead of being warehoused in a facility just waiting to die.
Bob is the Founder and Editor of the online blog Alzheimer’s Reading Room, and a former Alzheimer’s caregiver. His mother Dorothy lived with Alzheimer’s disease. When Bob started caring for his mother, he had one goal — to keep her home and give her the highest quality of life possible. He accomplished his mission.
Bob understands that Alzheimer’s caregivers are often thrust into their role with little or no experience, training, or education about Alzheimer’s disease. As a result, they are often overwhelmed and suffer from feelings of helplessness. While reading, researching, and searching the Internet, Bob realized there was a need for concise, high quality information that Alzheimer’s caregivers could understand and use in their everyday life. That led to his founding the Alzheimer’s Reading Room.
Dr. Bill Thomas
Dr. Thomas is a visionary leader in the online Changing Aging movement and a world-renowned authority on geriatric medicine and eldercare. He founded two movements to reshape long-term care globally. The Eden Alternative, a philosophy and program that de-institutionalized nursing homes in all 50 states and worldwide over the past 20 years. A self-described “Nursing Home Abolitionist,” he is also creator of The Green House Project, a radically new approach to long term care where nursing homes are torn down and replaced with small, home-like environments where people can live a full and interactive life.
Norman Mc Namara
Norrms, as his friends call him, was diagnosed in 2007 with early onset dementia at age 50. In the years since his diagnosis, he has done more to educate the world about the disease than most of us can imagine doing in a lifetime. He organized the first ever Dementia Awareness Day, now an annual event worldwide.
He is also a frequent speaker and blogger on the topic and the inspiration behind The Purple Angel, which is quickly becoming the international symbol for dementia awareness. Norrms is quick to remind friends and fans that if he can make such a difference while battling dementia, anybody can do it! Read more about Norrms in his book, Me And MY Alzheimers [affiliate link].
Colin has had a long career in aged care with a particular interest in person-centered care for people living with dementia. His programs have won The Positive Living in Aged Care Award, A Better Practice Award, and The Mental Health Services International Mental Health Award for intergenerational programs for people living with dementia.
Colin is the Care Services Area Manager at UnitingCare Ageing’s Starrett Lodge in Hamlyn Terrace, north of Sydney, Australia. He believes strongly that residents should be participants in life, rather than just recipients of care. This video, filmed at Starrett Lodge’s dementia care unit, shows just what true Person-Centered Care is all about. It should be the model everywhere.
Greg, an award-winning political writer and investigative reporter, was diagnosed with early onset Alzheimer’s disease in 2010 at the age of 59. His maternal grandfather and his mother died of the disease. He also carries a marker gene for Alzheimer’s.
A journalist for more than 35 years, he uses his reporting skills to investigate and document his journey through dementia, just as he would any other journalistic story. His memoir, On Pluto: Inside the Mind of Alzheimer’s [affiliate link], gives us a glimpse of the devastating disease from an insider’s perspective.
Lori La Bey
Lori, Founder of the online blog Alzheimer’s Speaks, is a passionate advocate who searches for ways to shift our dementia care culture from crisis to comfort. Motivated by her mother’s 30-year journey through Alzheimer’s, Lori’s goal is to raise awareness by having open and honest conversations, shift perceptions, create acceptance and provide the resources that individuals, businesses and communities need, including her Alzheimer’s Speaks YouTube Channel.
In 2008, at the age of 49, Michael was diagnosed with early onset Alzheimer’s disease. To quote him, “I currently live every day to make a difference. In fact, I am now an advocate for education and the eradication of this disease. I am 100 percent open about my condition because I want others to learn and become educated about something that most people are not even aware of.” Join him by supporting his awareness project, the Michael Ellenbogen Movement.
Ken was diagnosed as having Early Onset Lewy Body Dementia at the age of 56. Quoting from his online blog, Living Well with Lewy Body Dementia, “I am now learning to live a new life doing things to help others with the illness. I am proud to be an Ambassador with the Lewy Body Society. I am also honoured to be a member of Dementia Alliance International, and Innovations in Dementia as well as being a Dementia Friends.” Learn more about Ken through his article, “Living Well with Lewy Body Dementia.”
John Schappi R.I.P.
On his online blog, Aging and Parkinson’s and Me, John says, “My diagnosis with Parkinson’s Disease in September 2009 at age 80 gave my life a new focus and challenge. Finding ways to meet this challenge helped make 2010 the best year of my life. I hope this blog will be a place where I can connect with others who also are dealing with aging and its afflictions and attractions so that we can share our experience, strength and hope.” Update: John passed away February 21, 2018.
Kate Swaffer commenced her professional career as a nurse, specializing in dementia and aged care. She was diagnosed with younger onset dementia at age 49, and now works as an advocate and activist for dementia and aged care, and is an author, poet, educator and speaker. She is the inaugural Chair of the Alzheimer’s Australia Dementia Advisory Committee. She has many published articles and a poetry book and advocates extensively as a voice for those living with dementia, and her book “What the Hell happened to my brain?” is to be released early in 2016. She is also one of the founding members of Dementia Alliance International, established in January 2014 to promote education and awareness about dementia – in order to eradicate stigma and discrimination – and to improve the quality of the lives of people with dementia.
Alexander “Sandy” Halperin, DDS, was diagnosed with early-onset Alzheimer’s disease in 2010 at age 60. As a person living with dementia, Sandy has chosen to remain active as an alumni member of the National Early-Stage Advisory Group. He hopes to bring awareness to what he calls “invisible illnesses.” Sandy is compelled to be a part of the discovery of treatments, preventions and cures, as well as de-stigmatizing the diagnosis of dementia. “Partnering with [Florida State University’s] College of Medicine has been my best step in enhancing Alzheimer’s research funding,” he said.
“All we really are is our thoughts and our brain,” he says. “So this is a different kind of pain. It’s not a physical pain, the pain is emotional.”
Alzheimer’s / Dementia Hall of Fame Open for Nominees
Who else do you feel should be included because of their extraordinary work on behalf of people living with Alzheimer’s or another form of dementia? Let us know in the comments below.