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Support available for those looking after loved ones with dementia

Despite the growing number of people with dementia, a stigma still surrounds it
15609267_web1_190219-ACC-M-Dementia
The Alzheimer Society of B.C. is trying to erase the stigma which still surrounds dementia.

Even though more people than ever are living with dementia—either themselves, or as the caregivers or friends of people with dementia—there is still a stigma attached to it, which the Alzheimer Society of B.C. is tackling with a campaign entitled “Yes. I live with dementia. Let me help you understand.”

Tara Hildebrand, the support and education coordinator at the Alzheimer Society of B.C.’s Interior Resource Centre, which serves Ashcroft and Cache Creek, says that 40 per cent of the people living with dementia report not being included in everyday life in their community. “This isn’t just people with dementia, it’s their care partners as well. It affects not only the people diagnosed, but the entire family.

“At the Alzheimer Society we help people understand and live with dementia. We provide a friendly environment, and try to erase the stigma. In support groups, caregivers will often say that things have changed dramatically in their homes; then people will say to them ‘I saw X, they look great!’

“But it’s not about how people look. Commenters aren’t living the caregiver experience. They’re trying to be helpful and positive, but it’s not the best approach.”

Hildebrand says that people looking after those with dementia have to deal with a lot of changes. “Our need to be ‘right’ goes off the plate. It’s not about us being right; we can either be right or be happy. Does it matter [being right] at the end of the day? Why do I need to be right? It’s rooted in grief, and people don’t want to admit it.

“It’s not about correcting [people with dementia]. We live in reality; the world they live in is their reality. Their truth only overlaps with ours a bit. The family expects the person to be who they used to be, to change, and they can’t. We have to change. It’s hard to watch that person change and fail, so we need to make sure we set them up for success and simplify their life.

“You won’t win an argument with a person with dementia. You have to go with what you’re presented with in the moment. Ask yourself ‘Am I getting any joy out of this moment?’ People with dementia are losing the past, and have no conception of the future, so all we have is this moment. Enjoy it.”

Hildebrand says that there is an ongoing support group meeting for caregivers of people with dementia at the Ashcroft hospital on the first Tuesday of every month. Pre-registration is required; call (250) 377-8200 (toll-free 1-800-886-6946) to register or find out more information.

There is also the Minds in Motion program in Kamloops, which is designed for people in the early stages of dementia and their caregivers, and which Hildebrand describes as a fantastic program. “It’s open to anyone who wants to come in. Dementia patients get 45 minutes of exercise from a certified instructor, with lots of chair exercises, and there is a social program that varies depending on the group. It’s open to anyone who wants to come in. It’s designed for people with dementia and their care partners, so that they can be with like-minded people.

“It’s very fluid. Sometimes a game or activity is set up but people prefer to sit and talk. If we have the time, and the conversation is flowing, we go with it. People are getting what they need.”

Minds in Motion is offered in Kamloops at the John Tod Centre YMCA at 150 Wood Street, every Wednesday from 2:30-4:30 p.m. For more information contact the Central Interior Resource Centre at (250) 377-8200 or toll-free at 1-800-886-6946.

Hildebrand says that dementia is devastating for family members. “You know who mom used to be, and it’s hard to love the person in front of you when you remember the person they were. But joining them in their reality is the biggest gift you can give them. They can’t join us in our world, so we can join them in theirs.”



editorial@accjournal.ca

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