Caregiving: The Cost and the Crisis

Last week a new report on the burden of family caregiving was published by Health Quality Ontario. There are many eye-opening findings that tell us of a growing health crisis. A health crisis that is only going to get worse until we take a look at the multi-faceted issues and develop prevention and intervention strategies that will help family caregivers be healthy, feel supported, and valued as part of the care team.

The report, Reality of Caring: Distress among the caregivers of home care patients, takes a look at the impact of caring at home for a family member who is elderly, ill or disabled and receiving services in the Ontario home care programs. These are the family caregivers who often don’t realize they are family caregivers. They fill that role out of deep love, obligation and usually at a great cost to their own physical, mental, emotional and spiritual health.

While the report brings to light very important issues for which we need to pay attention, it misses some critical points.

What We Need to Pay Attention To:

The first startling fact appears in the executive summary:

“… among the 97% of long-stay home care patients who also received care from an unpaid caregiver in 2013/14, one third had caregivers who experienced distress, anger or

depression in relation to their caregiving role, or were unable to continue that role. That rate of distress had more than doubled since 2009/10.”

The research was focused on long-stay home care patients with the majority being seniors. Increased distress levels were contributed to:

  • level of cognitive impairment
  • functional disability
  • frail health

Generally speaking, 40 – 50% of caregivers in these situations experienced caregiver distress.

This situation is critical for two main reasons:

  •  It is expected that within the next 15 – 20 years the population aged 65 and older will double. The population aged 40 – 65 will decrease and this puts enormous strain on the unpaid caregiver. Potentially it will mean an increase of caregivers with their own major health issues caring for someone with higher needs health issues. This puts the health of both caregiver and caree in jeopardy.
  •  The current philosophy of aging in place has its merits. It can reduce the financial cost of hospital stays and long term care, and reduce the stress on the caregiver because their family remains in the comfort of their home. To make this really work, we need to look at the overall support for family caregivers. There is much more to caregiving than learning how to lift someone from bed to a wheelchair, change dressing and give IV medications. We must help the caregiver keep their identity, their own sense of self, and believe in a life beyond caregiving. This is much more than self-care. It is self-preservation. Caregivers are people first.

In my next blog I will share a glaring omission in this report and why we must pay attention to what has been missed.

You can read the full report here:

http://www.hqontario.ca/Portals/0/documents/system-performance/reality-caring-report-en.pdf

May you find peace, hope, and joy in every day.

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3 Comments

  1. This is very important information for people to be aware of. It will need to be addressed and having the opportunity to see it clearly can be vital for those involved.

    Thank you for your work.

    • Thanks, Brad. It is getting scary and the ideal “aging in place” philosophy will need to include supports for the emotional, mental, physical and spiritual health of the family caregievers.

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