Who is Caring for Our Caregivers? We Are and Here’s How.

Photo Credit: Mark Nowaczynski

Who is Caring for Our Caregivers? We Are and Here’s How.

Over the course of your life, your parents most likely put food in your stomach, clothes on your back, and a roof over your head and eventually set you on a path for adulthood and independence. You may now be repeating that cycle for your own children as generations of people have been doing since the beginning. The last century, though, has seen an unprecedented disruption to that cycle with a rapidly growing number of Canadians now becoming unexpected members of the new ‘sandwich generation.’  Why is this?  Well for one thing we are all living longer than any one of us expected to even a century ago when our average life expectancy was still only 51 years of age. While there have always been folks who lived much longer than that, they tended to be those who avoided the misfortunes of life and poor health.

Medical advances now mean that we can live on average to 81 years of age, but more of us are doing so with multiple chronic conditions, functional challenges, and with poorer social supports at hand as we tend to outlive family and friends with each passing year and are less likely to be living in intergenerational households and communities as we become increasingly mobile as a society. The triumph of ageing has also become a challenge for us all, while for the first time in memory, the majority of people may now be spending more time caring for their parents than they do for their own children.

If you are reading this – this likely may be your story, as currently over eight million Canadians over the age of 15 are providing care to a loved one – a son, daughter, aunt, uncle, mother or father. When people care for a generation of loved ones above and below them, they are members of this new ‘sandwich generation.’ Currently, more than three million unpaid Canadian caregivers, or 40 per cent of all Canadian caregivers, provide care to an ageing parent. Of these caregivers, 30 per cent cite frailty or ageing as the reason they provide care to their parents while 7 per cent cite Alzheimer’s disease or another dementia as their primary reason. This latter group, caring for loved ones with dementia, is rapidly growing, as the incidence of dementia rapidly increases with each passing decade of life beyond our sixties. About 30 per cent of unpaid caregivers caring for their parents report five out of a possible nine psychological symptoms including those related to stress, depression and anxiety, and Canadians who act as caregivers to their parents are more regular users of health care services.

In short, being a caregiver is hard work.

It’s even more challenging when you consider that many caregivers in Canada also struggle to balance their professional and personal obligations. According to Carers Canada, 40 per cent of working caregivers miss days of work, 26 per cent take a leave of absence, 15 per cent reduce their work hours, 10 per cent turn down job opportunities, and six per cent quit their jobs. The stress of having to balance caregiving duties and professional responsibilities reduces levels of productivity because caregivers are more tired, need to take time off and more often leave work early, which is reflected by the fact that 46.8 per cent of caregivers’ incomes are between $20,000 and $39,999, and 38.5 per cent of caregivers forgo necessities to cover care-related expenses. Indeed, while caregiving may go unpaid, it does come at an enormous cost for many.

In fact, the financial value that caregivers contribute each year on behalf of our country is astounding. One admittedly conservative estimate puts the economic contribution of unpaid caregivers to older adults at $25 to $26 billion annually for the Canadian health care system, which would otherwise have to provide the care these individuals lovingly provide each and every day. Indeed, while some policy makers in the past have worried that the provision of more home care would see less of us choosing to care for a loved one, the reality is that over 98 per cent of Canadians receiving home care are also receiving care from an unpaid caregiver. In fact, unpaid caregivers contribute to more than 70 per cent of their family member’s total caregiving needs.

The reality is that many Canadians who become caregivers to their parents or older individuals also become caregivers suddenly and often without appropriate preparation, training or the experiences of having seen their own parents fill the same role given our rapidly changing demographics. Furthermore, the fastest-growing group of caregivers is made up of those supporting their friends and neighbours, often in cases where family caregivers are not close at hand or available. Given the essential role all caregivers play in the health care teams of older adults, and the increasingly important role they will play as our ageing population grows, it’s important to support all caregivers to be able to effectively provide care to their older loved ones.

Indeed, Ontario’s The Change Foundation, which has now made caregiver issues their primary area of focus, says one of the ways caregivers ask to be supported is through appropriate training to give them the skills and tools they will and do need to care and advocate for their loved ones, as well as to help them navigate our often complex and byzantine health care system.

For our part, Sinai Health System has made providing support, training and education to caregivers so they can be more confident in providing the care that their ageing loved ones need a focus of its work as well. In particular, through its Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and Training’s CARERS Program, it provides family caregivers of persons living with dementia with support through a series of 10 evidence-informed skills-based group training sessions.

Through this innovative training program, caregivers gain practical skills to improve their communication and coping skills as well as specific training to manage dementia-related behaviours through guidance and coaching from expert clinical staff. As a result of the program, caregivers who participate often feel less isolated and better able to provide the care their loved ones need to remain independent at home and in the community for longer. As a result, our team often recommends this program to the caregivers of our patients.

In fact, caregiver support is integrated across many of our Sinai Health System programs, from the hospital-based care to the outpatient and community support services we provide. Circle of Care, Sinai Health System’s home health care and community support service agency, leads Family Caregiver Connections, a network of seven Jewish community agencies committed to delivering a collaborative approach to supporting caregivers. Caregivers in this program further benefit from family support groups, education sessions, and limited free respite care and transportation services. The program can also connect caregivers with other supports from Circle of Care, such as day programs, Holocaust Survivors services and volunteer services.

Our Sinai Health System partners are also working to improve our information resources to allow our patients and their caregivers to better understand and address health care and access to care issues with a more proactive approach. Through our Older Persons Education and Navigation Strategy (OPENS), we have started to release a useful information series accessible in print, electronic and web-based formats that have been developed in partnership with patients and caregivers, to provide them with the information they need, when they need it.

Indeed, by recognizing that caregivers are a rapidly growing segment of our population who not only provide care but also need our care as well, we can better support healthy ageing across generations.  With the support and education from organizations like ours and others, caregivers should become increasingly confident that they can have the skills and tools they need to provide the right care in the right place at the right time to their older loved ones.

Date modified: 2017-03-13

About the Author:

Dr. Samir K. Sinha MD, DPhil, FRCPC

Dr. Samir Sinha is the Peter and Shelagh Godsoe Chair in Geriatrics and Director of Geriatrics at Sinai Health System and the University Health Network in Toronto. Dr. Sinha is also an Associate Professor of Medicine at the University of Toronto and Assistant Professor at the Johns Hopkins University School of Medicine.

A Rhodes Scholar, Samir is a highly regarded clinician and international expert in the care of older adults. He has consulted and advised governments and health care organizations around the world and is the Architect of the Government of Ontario’s Seniors Strategy.  In 2014, Maclean’s proclaimed him to be one of Canada’s 50 most influential people and its most compelling voice for the elderly.

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