About 66 to 68 per cent of caregivers said they wished there was more financial or day-to-day support from government agencies.  Photo by Josh Appel on Unsplash

Who will care for the family caregiver?

By 
  • November 30, 2018

The title of family caregiver implies the act of giving care to loved ones with acute or chronic health issues. What it fails to convey is the importance of caregivers receiving care themselves — and that’s a  problem, according to a new study. 

The Change Foundation, an Ontario-based think tank, recently surveyed 800 family caregivers in Ontario and found that almost half of them have experienced a negative impact on their mental health, their personal time, social life and the ability to care for themselves. 

Spotlight on Ontario’s Caregivers,” published Nov. 15, examines the day-to-day experience of a typical family caregiver in Ontario. The report found that although experiencing a strengthened relationship with their loved one, about two in five feel trapped, helpless and at times frustrated. 

“Just asking, ‘How are you doing?’ I mean, that one simple question at the door... we’ve had many families break down in our lobby and we know they’ve hit a wall,” said Erin Leneeuw, clinical resource coordinator for intake and family guidance at Providence Healthcare in Toronto. 

Leneeuw said the challenges facing family caregivers are something Providence Healthcare has been aware of for a long time and The Change Foundation report only supports what they see every day. 

Providence Healthcare runs an adult day program providing social support for elderly suffering from dementia and their families. For $31 a day, services include up to 10 hours of care and a hot meal. The day program also provides family and caregiver support, including peer support groups, counselling services and resource centres. 

“When you’re flying in an airplane, they always tell you that the first person you have to put the oxygen mask on is yourself before the people that are around you,” said Elizabeth Davison, manager of the adult day program. “You have to remind them who’s going to look after their loved one if you’re not here and usually that’s a quick reality check.”

Davison and Leneeuw agreed that Providence Healthcare has a role to play in taking care of the caregivers but there is much work to be done in bringing these issues to the wider public. 

The report said multiple factors contribute to caregiver stress. The most common included dealing with the declining health of their loved one (60 per cent), trying to meet the needs of their loved ones (50 per cent) and trying to manage their own emotions (50 per cent). 

About 66 to 68 per cent of caregivers said they wished there was more financial or day-to-day support from government agencies. 

“We’ll see what happens with this new government, but earlier this year, the previous government announced policies on paid days off and actually made specific mention of family caregivers,” said Christa Haanstra, executive lead for strategic communications at The Change Foundation. 

“I think for us, we looked at this ... We define support quite broadly and the most important piece is that it’s not only about money. It is about understanding their role as caregiver and making sure that they don’t burn out.”

Saint Elizabeth Healthcare is using artificial intelligence to help promote self-care among family caregivers. Allyson Kinsley, senior vice-president of corporate strategy, spearheaded the launch of the new service at Elizz.com

Users can visit the website to access in-home care and services provided by Saint Elizabeth Healthcare. Last month, a new chatbot feature called Elizzbot that provides on-demand counselling online was launched. 

“It’s based on cognitive behaviour therapy and it really looks at the user’s mental and emotional wellbeing,” said Kinsley. “Even part of it, is their physical wellbeing... We’re trying to really inspire self-care for family caregivers and that’s what we’re all about.”

Kinsley added that as the baby-boomer generation continues to age, it is the millennial generation that will need the digital services and resources Elizz provides. 

Seventy-one of the survey’s responders (nine per cent) were ages 16 to 24. While they are less likely to be involved in financial support, about one-quarter of young carers surveyed said they are using personal finances or their savings to pay for caregiving expenses. 

Some (36 per cent) find it difficult to meet work responsibilities and some believe that caregiving could also have a long-term impact in their career growth (30 per cent) and their financial growth (36 per cent). 

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