Australian Graham Newton-Small used to drive Winston Churchill around
London between his shifts as a barman in Earl's Court.
He also spent 20 years working for the United Nations in Africa, grew up
in regional NSW and loved watching MASH and listening to The Beatles.
But none of the dementia care nurses working with him every day would
have known that about him, if it were not for his daughter Jay Newton-Small.
After finally needing to put her father into care, Newton-Small was
asked to fill in a 20-page questionnaire outlining his likes, dislikes,
routines, favourite foods — details required to help medical professionals care
for those with dementia and Alzheimer's.
Realising there was no way the staff would remember all the dot points
about her dad — especially with 150 other residents to think about too — the
US-based former Time journalist suggested she write his story.
"I wrote a story and they absolutely loved it. It really
transformed his care," Newton-Small told ABC Local Radio, while in Australia to scatter her father's ashes.
"I felt I wanted to share who the essence of my dad was because I
felt you couldn't know him and care for him unless you knew his story.
"[I was] boiling down his amazing life into a story that became his
voice, his calling card to others to explain who he was."
The care home asked Newton-Small to write more and, together with a
friend from the Wall Street Journal, they created MemoryWell,
a service writing the life stories of those living with Alzheimer's and
dementia.
People's stories are hosted on the website and families can upload their
loved ones' favourite music, videos, images, art and readings.
"That way, when family members or caregivers sit with them, they
have a whole toolbox of things with which to engage them," Newton-Small
said.
"Having those tools at my fingertips really helped me to bring him
back to me and give me more moments of lucidity."
Getting through the
fog with a life's story
Newton-Small said she learned a lot about her dad writing his story for MemoryWell, including
discovering that he had qualified for an Olympic diving team but did not
compete after blowing an eardrum.
Like so many Australians in the late 1950s, Mr Newton-Small took a boat
to London, where he worked bartending and driving for the British government.
One passenger was Sir Winston, who wrote the young Australian a
recommendation for the UN, thereby launching a 20-year diplomatic career.
"He was such a peripatetic, wandering soul who just wanted to spend
his life travelling," Newton-Small said.
"He was always wandering; that's the way he was, and once his
nurses knew that, they created adventures for him because they knew he wanted
to explore.
"They would show him pictures of far off places and walk with him
in the garden and explore places with him and that enabled them to connect with
him."
She said once the nurses knew her father was originally Australian, they
would show him photographs of koalas and kangaroos to settle him when he was
agitated or aggressive.
"So many of us feel so helpless being able to engage with a person
with Alzheimer's, being able to find ways to get through that fog and I really
wanted to find a way to do that," Newton-Small said.
"To me, my father was the centre of my universe so of course I was
going to take care of him and make sure he got the best care he could possibly
get.
"MemoryWell grew out of my experience of trying to find ways to
engage him."
Seeing the person,
not just the condition
According to Jillian Jeffery of Alzheimer's Australia (Qld), there are
currently 353,800 Australians living with dementia right now and there is no
cure, as yet.
"Everything we focus on is about improving the way we provide
specialised dementia care," she said.
"We love the concept of MemoryWell [and] support all innovation,
particularly in the dementia care setting.
"We encourage not only our staff but our carers and family members
to see the person and not just the condition."
She said more meaningful social interaction for people with Alzheimer's
and dementia was "very important".
"Studies in the UK show that having these stories builds empathy
between caregivers and residents," Newton-Small said.
"It has been shown to decrease depression among residents and
tangibly increase their quality of life."
She said MemoryWell was currently being embraced by several care homes
in the US and she had also been contacted by a cemeteries group in Victoria
with a story-sharing idea.
Mr Newton-Small, who was originally from Inverell, died in Washington DC
on July 24, 2015, the day before his 76th birthday.
SOURCE: ABC Brisbane, Jennifer King and Loretta Ryan
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