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Leading the UK in Dementia Advocacy

Ann Napoletan
By Ann NapoletanJuly 31, 2013

I don’t remember exactly when I first heard the name Norman McNamara, but at the time I’m sure I couldn’t have imagined the magnitude of his work.  Norrms, as his friends call him, was diagnosed with early onset dementia at age 50. In the five 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.

It was Norrms’ wife, Elaine, a caregiver for 35 years, who began to notice changes in him. Little things like putting a cup of hot tea in the refrigerator and forgetting a visit with his mother eventually grew into failing to remember how to button his shirt and tie his shoes.

Second Chance

His decline was swift until a physician suggested trying a drug called Ebixa (Memantine) in an attempt to temporarily suppress some of his symptoms. Norrms is extremely careful to stress that this is not a cure,and the drug is not effective for everyone, but in his case, the results were very encouraging.

How long it will last is anyone’s guess, but for the moment it has provided a new lease on life. Having learned firsthand just how little support is available for dementia patients, particularly those with early onset, Norrms sprung into action — quickly making a significant impact.

Dementia Awareness Day: Just the Beginning

Little did he know how his advocacy efforts would explode across the UK. “Did I think it would get so big? Certainly not, but I sure am happy that it did,” he said.

In addition to three face-to-face meetings with Prime Minister David Cameron, his accomplishments include organizing the first ever Dementia Awareness Day (now an annual event), founding the Torbay Dementia Action Alliance, speaking to police and other first responders about their role in the dementia crisis, and authoring four books.

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. This is the same insignia being used by Gary LeBlanc and his Alzheimer’s/Dementia Hospital Wristband Project.

Paint the Town Purple

Several weeks ago, Norrms and a passionate group of volunteers hit the streets in the town of Paignton.  On that single summer day, they visited 202 businesses, asking them to commit to becoming dementia aware. Every single establishment said yes. According to the TDAA website, this means over 600 businesses in and around the borough of Torbay are now “dementia aware.”

With so many shop owners and their employees on board, it’s just that many more advocates to help spread the word. Part of the impetus for this effort was a post-diagnosis encounter Norrms had with a store clerk. He had become a bit flustered while paying for his purchase and the clerk’s response was less than ideal. Now, with their newfound awareness, customer facing staff members will be more apt to recognize and better serve those who suffer from dementia.

The Incredible Power of One

Once you get to know this dementia awareness champion, it’s obvious that his astoundingly positive attitude is contagious. He credits the support of family and friends for helping him to maintain his great outlook, “I am lucky to come from a very close knit family and they wouldn’t let me sit on my rear and do nothing.”

He reminds us that perhaps dementia is the ultimate lesson in living in the moment. When asked to describe day-to-day life with dementia, Norrms said, “I take each day as a new day, dementia is so unpredictable that every day is different, I never worry about tomorrow as it will always become today.”

Norrms is also quick to remind friends and fans that if he can make such a difference while battling dementia, anybody can do it! Delivering hope, inspiration, and joy to the world on a daily basis, Norman McNamara epitomizes the power of one!

Ann Napoletan
Author

Ann Napoletan

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