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Caregivers Need Help, Not Just Recognition

04/20/2017 03:23 EDT | Updated 04/20/2017 03:23 EDT
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senior woman, 91 years old walking in the street supported by a crutch and a young caregiver

Organizations advocating for family caregivers are applauding the prime minister's recent statement in recognition of family caregivers on National Carers Day. I'm less celebratory. Here's why.

In Manitoba, 'Caregiver Recognition Day' is already enshrined in legislation. Groups in Alberta, Newfoundland and Labrador, and Quebec have advocated similar recognition days or weeks to promote public awareness.

Of course, we all need to be aware of the significant contributions family caregivers make to society -- after all, they are sizeable. In 2012, eight million Canadians provided care, and 2.2 million Canadians received that care in their own homes -- most often from family.

In 2009, the estimated dollar value of family care was more than $25 billion.

For many, caregiving is all day, every day, 365 days a year -- and their work is often invisible to others. So it is important carers feel their contributions are valued, in particular, in their interactions with health care professionals, their employers and other family members.

But in my years of research with family caregivers, including leading a provincial consultation with 400 caregivers, something has become clear to me. Although family members do not want their care work to be taken for granted, some are uncomfortable, even disconcerted, by being recognized with a special caregiver's day.

Many caregivers view what they do as a natural part of family relationships. They don't do it for personal benefit or with the expectation of appreciation. I noticed a similar phenomenon when I spoke with a nursing home volunteer who, for this same reason, refused to attend a volunteer recognition event.

My research also suggests there may be some carers for whom praise such as, "You're doing a great job," or "You're a wonderful daughter" can actually invoke guilt or ambivalence.

Why guilt?

Because caring is a complex emotional experience, often connected to our identity and self-worth. When we confuse 'caring for' with 'caring about,' guilt can result. What happens, for example, when caregivers can no longer manage and they face difficult decisions about institutionalization for their loved one?

Lastly, caregivers can view recognition as a trivial concern relative to the care recipient's need for services. In this respect, a recognition day is unhelpful.

So what do caregivers want?

What caregivers need are accessible services for the person they are caring for, when they need them. Caregivers have told me they want access to services for themselves and the care recipient, not a pat on the back. This is the true meaning of recognition.

Truly being aware of caregiver contributions and needs means being aware of the crucial importance of formal health care supports and policies. Our governments could do much more in this regard.

Caregiver concerns are supported by existing evidence. Some research emphasizes the benefits of services and policies targeting carers directly, such as work accommodation and income assistance. The recently tabled federal budget announced a new caregiver benefit, offering up to 15 weeks of assistance to help eligible Canadians caring for critically ill or injured family members. This is a welcome measure -- and a good start.

However, being able to access sufficient, quality health care services, such as home care for the loved one being cared for, is also important. The federal budget promises increased funding to the provinces for home care. Let's hope that funding finds its way to actual services for patients -- and soon.

Carers Canada emphasizes moving "beyond recognition" to improve access not only to caregiver support services but also patient care resources. This is what our governments must do if they truly want to support caregiving in Canada.

This does not mean that when formal services are provided, family carers 'do less' -- instead, they can focus on different aspects of care and are then better able to preserve their own sense of well-being. Caregivers could then also be less frustrated by having to 'fight' against an impermeable system to access help for their family member.

To my knowledge, no research exists that indicates any long-term effect of a caregiver recognition day on carer burden or well-being.

I am also somewhat personally suspicious of the rhetoric of carer acknowledgement, since it can be used politically to imply that governments themselves should not be responsible for the provision of care -- justifying further erosion of publicly funded services.

Truly recognizing carers means providing helpful, supportive, long-term health and social care services for those who need them -- as well as for their carers.

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