Alzheimer's and dementia patients benefit from MemoryWell digital storytelling project
Updated
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.
Researchers have found a link between high exposure to statins and a reduced Alzheimer's risk.
While the study is purely observational, the research team - including Julie M. Zissimopoulos, Ph.D., of the University of Southern California in Los Angeles - and colleagues say that the findings should be further investigated in clinical trials.
Alzheimer's disease is the most common form of dementia, with around 5.2 million people in the United States aged 65 and older living with the disease. By 2050, this number could reach 13.8 million, unless new prevention or treatment strategies are found.
While great strides have been made in the search for ways to halt the development and progression of Alzheimer's in recent years, researchers are yet to jump the final hurdle.
Just last month, hopes of the first medication to slow Alzheimer's were dashed, after drug giant Eli Lilly announced that their promising drug candidate solanezumab had failed to reduce cognitive decline in a phase III trial of patients with the disease.
In the new study, Zissimopoulos and team suggest it might be worth investigating the feasibility of existing drugs for the prevention of Alzheimer's, after finding a link between high exposure to statins and reduced Alzheimer's risk.
Statins and Alzheimer's
Statins are often prescribed to lower levels of low-density lipoprotein cholesterol - "bad" cholesterol that can increase the risk of heart attack and stroke.According to Zissimopoulos and colleagues, previous studies have shown that high cholesterol levels may be associated with the buildup of beta-amyloid plaques in the brain, which are considered to be a hallmark of Alzheimer's disease.
As such, the researchers hypothesized that cholesterol-lowering medications might influence the onset of Alzheimer's and its subsequent progression.
To investigate their theory, the team analyzed 2006-2013 Medicare data of 399,979 adults aged 65 and older who had used statins.
The researchers looked at how low and high statin use might be associated with risk of an Alzheimer's diagnosis between 2009-2013. High statin exposure was defined as "at least the 50th percentile of days of filled prescriptions in a given year for at least 2 years during 2006, 2007, and 2008."
Each year between 2009-2013, around 1.72 percent of women and 1.32 percent of men were diagnosed with Alzheimer's, with diagnosis lowest among white men, at 1.23 percent.
Overall, men and women with high exposure to statins were 15 percent and 12 percent less likely to be diagnosed with Alzheimer's, respectively, compared with men and women with low exposure to the drugs.
However, on closer investigation, the team found that the link between high statin use and lower Alzheimer's risk was dependent on sex, race/ethnicity, and the type of statin used.
Alzheimer's risk dependent on statin type, sex, race/ethnicity
High exposure to statins overall was only associated with a reduced risk of Alzheimer's for Hispanic men, black women, and white men and women, compared with low exposure to the drugs.Breaking the data down further by statin type, the researchers found that:
- High atorvastatin exposure was linked to reduced Alzheimer's risk for white and black women, as well as for Hispanic men and women
- White, Hispanic, and black women had a lower Alzheimer's risk with high use of simvastatin, as did white and Hispanic men
- Pravastatin and rosuvastatin were linked to a reduced risk of Alzheimer's for white women.
The researchers stress that their study is unable to prove cause and effect, so clinical trials are required - involving all racial and ethnic groups - to confirm their results.
Still, they believe their findings indicate that certain statins could be a feasible strategy to combat Alzheimer's disease:
"Our study identified the associations between AD [Alzheimer's disease] incidence and statin use by statin type, sex, and race/ethnicity. This suggests that certain patients, facing multiple, otherwise equal statin alternatives for hyperlipidemia treatment, may reduce AD risk by using a particular statin.
The right statin type for the right person at the right time may provide a relatively inexpensive means to lessen the burden of AD."
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