Baycrest

THE CAREGIVERS' Club I n January 2018, during Alzheimer Awareness Month, Baycrest's world-renowned care was featured in the CBC documentary, The Caregivers' Club. The film shone a light on the heartbreak, humour and frustrations of caring for a loved one with Alzheimer's disease or other forms of dementia. The Caregivers' Club, which first aired on CBC on Sunday, January 14, 2018, offered a behind-the-scenes look at the lives of three caregivers taking care of spouses or parents who could no longer take care of themselves. All three were connected to Baycrest Health Sciences, where occupational therapist Nira Rittenberg provided advice, support, and consolation. Each caregiver took you far beyond the practical problems of navigating the healthcare system and into the psychological challenges of coping with the deterioration of their loved ones. Their stories unfolded over a one-year period as they navigated the erratic stages of this cruel and relentless disease. A compelling and cautionary tale, The Caregiver's Club turned a lens on a story that is, unfortunately, only just beginning for an entire generation. Rittenberg said the film is an important window into the tough world of the caregiver. "This difficult disease is one that challenges even the most resourceful of individuals. The public needs to witness the never-ending work, hardship and, yes, rewards of the labour of the caregiver, so they can help others who are dealing with it. We need to look at caregiving in a different light. Services and community supports need to respond to the growing numbers of dementia clients," she said. The documentary was also a labour of love for Cynthia Banks, award-winning director and principal of Toronto- based Banks Productions Limited. Banks watched as her mother was caregiver to her father until his death in 2016. Despite the heartrending impact the disease has on both patient and caregiver, Banks wanted the film to maintain an air of levity, to help all the caregivers watching it understand that their roles need not be without hope. "The Caregivers' Club is a candid, intimate portrait of family caregivers," Banks notes on her homepage for the film. "This is not only a story about caregiving, but a story about how to live life with hope, love and laughter." Still, the job of caregiver can be a thankless one. Caregivers are sometimes called "the forgotten ones," because despite all the media coverage of dementia, those who actually care for loved ones at home, or accompany them through institutional life, are largely ignored or taken for granted. They are the unseen and unsung everyday heroes, who manage in surprising ways, to stay strong and carry on without appreciation from society — or even their own patients. To watch The Caregivers' Club, visit: www.cbc.ca/cbcdocspov/episodes/the-caregivers-club Scene from the film: Relatives of those living with dementia call themselves "members of the club no one wants to join." BrainMatters SPRING/SUMMER 2018 23 DEMENTIA IN CANADA • There are currently 564,000 Canadians living with dementia. For each, there are one or more family members who provide care. • In 2016, Canada spent $10.5 billion in out- of-pocket and health care system costs on dementia. • Costs for patients with dementia are estimated to be more than five times greater than for those who are dementia-free. • The number of Canadians with dementia is expected to double by 2031. Source: Alzheimer's Society of Canada

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