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Hanging the way we look at dementia

Off the track

Hanging the way we look at dementia

Judith Graham

In November, six people with Alzheimer’s disease and related types of cognitive impairment stood before an audience of 100 in North Haven, Connecticut. One by one, they talked about what it was like to live with dementia in deeply personal terms. Before the presentation, audience members were asked to write down five words they associated with dementia. Afterwards, they were asked to do the same, this time reflecting on what they’d learned. “Without exception, the words people used had changed – from ‘hopeless’ to ‘hope,’ from ‘depressed’ to ‘courageous,’ from ‘empty’ to ‘fulfilled,’ “ said Erica DeFrancesco, a clinical assistant professor of occupational therapy at Quinnipiac University who helped organise the event. The session, followed by an hour-long discussion about dementia, is part of a new grassroots movement in the US aimed at educating people about Alzheimer’s disease and other forms of dementia, dispelling the painful stigma associated with these conditions and enhancing public understanding. A centrepiece of that effort, known as “Dementia Friends,” began just over a year ago under the auspices of Dementia Friendly America, an effort spearheaded by 35 organisations across the country. Currently, more than 13,200 people are registered as Dementia Friends in the US, and organisations in 14 states (Arizona, California, Connecticut, Hawaii, Illinois, Indiana, Maryland, Massac-husetts, Michigan, Minnesota, Ohio, North Carolina, Virginia, and Wyoming) are hosting events to sign up more. Globally, almost 14mn people in 33 countries are involved in the movement, which originated in Japan. To become a Dementia Friend, most people attend an hour-long presentation focused on several themes: Disease vs. typical ageing. Alzheimer’s disease and other types of dementia are illnesses of the brain, not a natural consequence of ageing. Scope of symptoms. Dementia triggers a wide array of symptoms, not just memory loss. Quality of life. People with dementia can live well, often for years. Maintaining identity and respect. People with dementia retain a sense of self and aren’t defined exclusively by this condition. (Testimonials by people with dementia are sometimes, but not always, included.) “If we can change the way people look at dementia and talk about it, we can make a big difference in people’s lives,” said Philippa Tree, who spearheads a well-established Dementia Friends programme in England and Wales, with about 2.3mn members, that has licensed its model to the US.

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