Distress among unpaid caregivers is rapidly rising, according to a report released by Health Quality Ontario (HQO) this month. The report, The Reality of Caring: Distress Among the Caregivers of Homecare Patients, stated distress of unpaid caregivers – usually family members, friends or neighbours of someone in poor health – has doubled in recent years.
The study uses the caregiver distress indicator from the Common Quality Agenda. This set of indicators was developed by HQO and partners to measure overall health system performance. Distress is tracked by the home care sector and includes the caregivers of patients who receive publicly funded home care for a long or indefinite period of time.
Highlights of the 2013/14 data include:
- 97 percent of long-stay home care patients also receive care from an unpaid caregiver
- One third of those caregivers experienced distress, anger or depression in relation to their caregiving role, or were unable to continue caregiving
- It was noted that caregivers’ distress was linked to the degree of cognitive impairment, disability and frailty of the people they cared for. Levels of distress were at:
- 5 percent of caregivers caring for people with moderately severe to very severe cognitive impairments
- 7 percent of caregivers caring for people who needed extensive assistance with or who were dependent in some activities of daily living
- 1 percent of caregivers for people at the two most severe levels of health instability
- Rates of distress were also higher for caregiver who provided more hours of care
- Caregivers experiencing distress provided 31.5 hours of care per week, compared to more than 17 hours received by individuals whose caregivers were not distressed.
It is noted that while distress may never be fully eliminated for caregivers, given the challenges of caring for a loved one in poor health, it is possible to minimize it as much as possible. Based on this data, HQO has identified that there is a need for better data about caregiver needs and experiences to improve the evidence for action and to serve as a tool to monitor progress on issues impacting caregivers.
For more information and to read the full report, please visit the HQO website.