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Professional help for amateur caregivers: Goar
Baycrest Health Science publishes caregiver’s guide to coach families through the challenges of dementia
The gold standard for dementia care in Canada is the Baycrest Health Sciences Centre.
The former Jewish Home for the Aged has blossomed into a teaching hospital/long term-care residence, housing one of the world’s top research institutes in cognitive neuroscience. It has a centre for memory and neurotherapeutics, outpatient clinics and support programs for caregivers and spouses. It is affiliated with the University of Toronto. It partners with other institutions such as Canada’s National Ballet School (to provide dance class for seniors with dementia). Over its 97-year history, it has become a repository of expertise on brain health and aging.
An estimated 747,000 Canadians are living with Alzheimer’s and other types of dementia. The number is expected to double within 15 years.
There is no cure for the cluster of cognitive disorders — Alzheimer’s disease being the most common — that rob individuals in the final third of their lives of their ability to remember, reason, communicate and care for themselves. Medicine can delay the onset of symptoms in some cases. In all cases it is possible to enrich the lives of seniors with dementia. That is where Baycrest excels.
But the vast majority of families affected by dementia — even here in Toronto — will never set foot in the Baycrest Centre. So Baycrest is reaching out to them. It has just published
Dementia: A Caregiver’s Guide
, a 138-page book designed to share its knowledge and techniques with the 8 million informal caregivers — spouses, adult children, siblings and friends — who provide 75 per cent of dementia care in Canada.
“The guidebook is the next best thing to having a Baycrest adviser by your side to coach you through a caregiving challenge, make you feel better equipped for managing the next one and hopefully reduce unnecessary stress,” says co-author Bianca Stern. “We’ve found that families, especially the primary caregiver, need information on what changes to expect in their loved one, how to deal with them and where to go for help.”
The book lays out the whole journey from the first signs of forgetfulness to the end-of-life care. It covers feeding, bathing, dressing and grooming, incontinence, sex and intimacy, sleep issues, home safety, medication and legal issues. It also prepares caregivers for the exhaustion, stress, isolation, anger, guilt and depression they’re likely to experience.
It answers the delicate questions many caregivers are reluctant to articulate: How do I convince a spouse or parent to hang up the car keys? How do I keep loving a person who no longer recognizes me? How do I handle family disputes about treatment and end-of-life care?
The language is clear and easy to understand. Each chapter begins with a real-life example. There is a glossary so caregivers can decode the medical, legal and pharmacological terms they’ll encounter.
“We want to encourage caregivers to look beyond the missing pieces,” says Nina Rittenberg, the book’s other co-author. It is not uncommon for certain abilities to remain intact — familiar habits, specific memories and certain social skills. Tapping into these preserved abilities is an important part of delivering care and reducing agitation and anxiety in the person with dementia.”
The softcover publication is available for $27.99 (plus taxes and shipping) on the Baycrest site. An online version is in the works. People within Internet access can phone Baycrest at 416-785-2500 ext. 2705 to order a copy. Those who can’t afford to buy a copy will soon be able to borrow one from public libraries, community centres and public health clinics.
According to the World Health Organization, a new case of dementia occurs every four seconds. Countries with rapidly aging populations are the most susceptible. Canada doesn’t top the list — Japan does — but it is in the top tier.
For decades family caregivers have done the best they can with no training, no pay and little government support. Prime minister-designate Justin Trudeau has pledged to invest $3 billion in home care in his first mandate. Ontario Premier Kathleen Wynne has committed an additional $750 million for home and community care over the next three years. But as caregivers are acutely aware, promised money doesn’t always flow. Even when it does, it can take a long time to filter down to the local level. For the foreseeable future, they’ll be the ones providing the daily care, responding to the unforeseen crises, struggling to navigate the health-care system and trying to find time to look after themselves.
On days when it all seems overwhelming, a well-thumbed guidebook will help.
Story by Carol Goar
The Toronto Star
, October 28, 2015