Dementia with challenging behaviours takes a huge toll on caregivers

Baycrest offers support with online educational resource

Toronto, ON – A rapidly aging population and the rising tide of dementia is placing a staggering responsibility on informal caregivers. It’s estimated that the majority of people with dementia – as many as 90% — will exhibit one or more challenging behaviours during the course of their disease. Baycrest Health Sciences is reaching out to families caring for a loved one with dementia with a new and important online support.

Baycrest’s mental health portal (www.baycrest.org/mentalhealth) offers videos about challenging behaviours related to dementia, and techniques for responding to those behaviors in ways that enhance the quality of life for the person with dementia. The educational resource – titled, Behavioural and Psychological Symptoms of Dementia (BPSD) – is designed primarily for family caregivers who want to keep their frail loved one at home for as long as possible, and stay well themselves.

Caregiver Peter Irwin

Caregiver Peter Irwin

Peter Irwin is on this difficult road, caring for his wife Margo, who has advanced dementia. Struck at age 62, in the prime of her life and professional career, and a mother of two, Margo was diagnosed with mild cognitive impairment (MCI) at Baycrest’s Sam and Ida Ross Memory Clinic in 2011. MCI can sometimes reverse or remain stable; for Margo, her impairment progressed rapidly within a year to full-blown Alzheimer’s disease.  Their world changed, Peter sold his business, becoming a full-time caregiver, while Margo continued her decline. This story is not unique.

One person in every 1,000 under the age of 65 develops Young Onset Dementia. Margo, a vibrant, artistic woman declined quickly, exhibiting profound memory loss and behavioural changes that became increasingly difficult for Peter to manage at home, even with a team of hired caregivers and the tremendous support of family and friends. She is now in Baycrest Hospital in an advanced stage of Alzheimer’s.

“The only comfort I can take in this horrific nightmare is that she was blissfully unaware of what was going on,” says Peter, who is grateful for the exemplary professional support he has received from Baycrest during the past four years. Baycrest’s multidisciplinary experts, from doctors to social workers and occupational therapists, and the Behavioural Support Outreach Team, have been with him and his family every step off the way.

“I had no idea what was coming at me. Just when you think you’ve got things under control, everything changes, and then changes again and again,” says Peter. He is sharing the wisdom he has gleaned from his four-year caregiving journey in seven video-clip talks that are part of the educational resource. Peter’s talks are titled: “It’s out of your control, “Educating myself”, “Asking for help”, “The behaviours”, “Learning ways to cope”, “Talking about it”, and “Transition from home care”.

Visitors to the website will find additional video talks delivered by Baycrest clinicians.

“When a person with dementia is distressed, it greatly affects the caregiver,” says Dr. Robert Madan, Baycrest’s Chief of Psychiatry and project lead for the mental health website. He estimates that anywhere from 50 to 90 percent of people with dementia will exhibit “responsive” (challenging) behaviours during the course of their disease.

“Caregivers are very well intentioned, but they need support too,” adds Dr. Madan. “Caring for someone with dementia is not a sprint, it’s a marathon. You have to pace yourself and learn to reduce your intensity of caregiving by seeking out community supports, so you can stay well.”

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The quick link to the BPSD page on the mental health website is www.baycrest.org/bpsd.

Baycrest’s mental health portal would not exist without the support of the AFP Innovation Fund, the Geoffrey H. Wood Foundation, and a private donation from Evelyn Burns-Weinrib, a long-time Baycrest volunteer. Last year, the website launched its first education module on Late-life depression to offer information and encouragement to seniors and families affected by this illness. Anyone experiencing symptoms of depression or feeling stressed and alone as a caregiver to someone with dementia, needs to reach out and ask for help, says Dr. Madan. Baycrest’s mental health portal is a good starting point.

About Baycrest Health Sciences
Headquartered on a 22-acre campus and fully affiliated with the University of Toronto, Baycrest is unique in the world, combining a comprehensive system of care for aging adults, one of the world’s top research institutes in cognitive neuroscience (the Rotman Research Institute), dedicated centres focused on mitigating the impact of age-related illness and impairment, and unmatched global knowledge exchange and commercialization capacity. www.baycrest.org

For more information or to arrange interviews, contact:
Kelly Connelly
Senior Media Officer
Baycrest Health Sciences
416-785-2432
kconnelly@baycrest.org

Andy Levy-Ajzenkopf
Marketing and Communications
Baycrest Foundation
416-785-5527
alevy-ajzenkopf@baycrest.org