Caregivers in Distress, a Growing Problem

Is there a Rainbow Behind the Clouds?

Written by Rita Roling

Throughout our lives we meet people that we admire. For me Moira was that person. She looked great; not a hair out of place, impeccably dressed and very poised. Over the years, we drifted apart, but a few months ago I saw her again. She looked tired and tense. Moira was in a hurry to get home as she is the caregiver for her husband who has dementia. He tends to become fearful when she is not present, she said, and it is difficult for her neighbor to calm him. Without intent, Moira has become a statistic, she is one of B.C.’s one million unpaid, in-home caregivers.

In her 2018 report, Caregivers in Distress – a Growing Problem, Isobel Mackenzie, Seniors Advocate, Province of British Columbia, states that one million unpaid caregivers provide roughly 75% of care for those who receive in-home care. The report however only includes caregivers who provide assistance to people who receive publicly subsidized home support; thus the total numbers are much higher. If this unpaid work force was to be replaced with paid staff, Canada’s and BC’s health budgets will increase annually by $2.5 million and $3.5 million respectively. The report validates the importance of the work caregivers provide in every part of the Province and describes it as a “critical pillar in our health care system, allowing seniors to remain at home and delay or even prevent costly care options, such as subsidized residential care or hospital stays.” Aging in Place is not only cheaper but it preserves dignity.

The Mackenzie study concludes that 31% of primary caregivers are in distress which is an increase of 7% since 2015, but the “actual number of primary caregivers identifying as distressed grew by over 1,000 which represents a 14% increase in the actual numbers.” A 2011 World Health Organization study examined stress levels among caregivers and those cared for and found that “subjected experiences such as depression and burnout were strongly correlated with the caregivers quality of life but less so for those who needed care.”

Causes and conditions of caregiver burnout

Unless reduced, high stress level may lead to burnout. The intense workload of home-management, nursing, chauffeuring and miscellaneous tasks are not the only contributors:

1. Role confusion such as caregiver vs spouse, child vs decision maker, and friend vs caretaker play a role.

2. Unrealistic expectations of themselves are also factors. Some caregivers feel that their particular care will result in a full recovery. This is unlikely especially if the loved one has a progressive disease such as Parkinson’s or Alzheimer’s. When recovery does not occur feelings of guilt, inadequacy and resentment can rise to the surface.

3. Caregivers frequently talk about loneliness. When the person you care for is no longer able to be present in the relationship, the loneliness can be unbearable. One blogger wrote “the plan was to grow old together – holding hands in rocking chairs on the porch and enjoying each others company.”

It is easy to understand why many caregivers are distressed, but unfortunately many of them either do not recognize the symptoms of burnout or the feelings of loneliness and depression are ignored.

Severely stressed individuals are susceptible to changes in their own health. As the saying goes: “if you do not look after yourself first, you cannot look after others.” Self-care is often put on the back burner as caregivers may be so focused on caring for someone else that their own needs are set aside. Changes in sleeping/eating habits, continuous worry, irritability, and sadness may be minimized and explained as “having a bad day”, but even the most resilient person cannot escape the demands that are part of caring. Thus it is important to know and to take advantage of available resources.

Increased respite and adult day care programs

Isobel Mackenzie has worked tirelessly to monitor seniors’ services and to identify service gaps. She presented her findings to the Provincial Government which responded by allocating $75 million dollars over the next three years to be earmarked for increased respite and adult day care programs. Barb MacLean, Executive Director of Family Caregivers of BC, applauds his systemic approach to support caregivers: “it is unprecedented in Canada…and we couldn’t be more pleased about this increased level of recognition and support for a very hard-working, invisible part of society.”

The Health Council of Canada estimates that unpaid caregivers provide roughly 75% of care for people receiving care at home in Canada. Demographically Canada is aging and as Aging in Place is more cost effective than institutional long-term care this figure will likely increase. So far the Federal Government has yet to allocate adequate funding for home-based care. Some systemic changes have started to occur but many more needs to take place. Canada Revenue Agency offers some tax relief and Employment Insurance Canada offers non-paid compassionate leave. The recent $75 million allocation by the Provincial Government is a good start but there is still a long way to go and much work to be done by all levels of government.

Helpful Telephone Numbers

Seniors Advocate British Columbia: 1-877-952-3181
Help Canada: 1-800-O-Canada
Family Caregivers Support Line: 1-877-520-3267
Jewish Senior Alliance: 604-732-1555

To learn more about the report by Isobel Mackenzie, click here.