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Practical Insights for Busy Caregivers

How to see past the negative when helping someone with dementia

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September 6, 2016, by Pat Morden, Caregiver Exchange

Helping someone with dementia Sherry Dupuis doesn’t accept the “tragedy narrative” of dementia, and she doesn’t want you to, either.

Dupuis is a researcher at the University of Waterloo. She and her colleagues have looked at depictions of dementia in books, films, newspapers, academic articles, and government policies. Two main themes emerge, she says – that people with dementia are portrayed as gradually deteriorating until they no longer exist, and that life with dementia is presented as being about loss and a “burden” for caregivers.

 “There is almost an allergic reaction to a person with dementia,” she says. “This discourse has profound implications for the ability of people to live well with dementia.” As a result of negative attitudes, they are stigmatized, excluded, isolated and underestimated. Negative ideas about dementia also contribute to fear: dementia is the second most feared group of illnesses in Canada.

Dupuis wants to change all that. She wants us to see people living with dementia as valued citizens. She recognizes that writing academic papers isn’t enough and, with her colleagues, has turned to the arts to make her ideas more accessible. In one project she and her colleagues, Gail Mitchell, Christine Jonas-Simpson, Pia Kontos and Julia Gray, brought together people with dementia, family members and performance and visual artists to develop art pieces that express ideas about the experience of living with dementia. She has also been involved in the creation and evaluation of two plays, I’m Still Here  and Cracked: New Light on Dementia, that bring to life the reality of living with dementia. Research she and her colleagues are conducting shows that these activities have an impact.

“We see real change,” she says. “People are able to see how things they do every day can cause suffering. They’re able to place themselves in the play and then critically reflect on new ways to be with and relate to people living with dementia.” The arts also provide an opportunity for people living with dementia to express themselves and discover new abilities and talents.
 
There’s no doubt that caregivers will experience sadness, says Dupuis, but she urges them to look beyond the loss. “Dementia is challenging yet the challenge isn’t all that dementia is,” she says. “We’ve learned that people with dementia have much laughter, joy and contentment. They also have continued opportunities and abilities that often aren’t recognized.”

How we respond to people with dementia has a real impact on their quality of life, she says. “If you believe that ‘mum is no longer mum,’ it’s going to be hard for mum, who needs touch, affection, patience, love and companionship, to live life to the fullest.”

Her advice to caregivers? “Life is for living, as fully as possible until our very last breath. Look for, nurture and support the continued abilities of people living with dementia. Take time to be truly present, and know they are still there – no matter what changes you see, they are always a person first, worthy of respect. There are sad moments, but there are also wonderful moments.”