"Watching someone we care about suffer from prolonged illness or declining health is always difficult, so it's not possible to completely eliminate caregiver distress..."
Ontario's home care system may be facing a perfect storm as home care patients become more elderly, ill and impaired, and the family members and other unpaid caregivers who help care for them are increasingly affected by stress and burnout.
That is the finding of The Reality of Caring: Distress among the caregivers of home care patients, a report on caregivers released today by Health Quality Ontario, the provincial advisor on health care quality. The report examines the growth of distress, anger, depression and the inability to continue caregiving among unpaid caregivers of long-stay home care patients in Ontario. Fully 97% of these patients rely on family members, friends or neighbours for assistance that supplements the care they receive for a long or indefinite period of time from Ontario's publicly-funded home care sector.
The Reality of Caring finds that long-stay home care patients as a group are becoming older and are affected to a growing degree by cognitive impairment, functional disability and frail health. More of them have Alzheimer's disease or other forms of dementia, more have difficulty with basic activities such as moving about, washing themselves or eating, and more are in declining health.
The report also finds that the family members and other unpaid caregivers who help look after long-stay patients are generally more distressed the more cognitively impaired, functionally disabled and in frail health the patients are. Higher rates of distress are also associated with providing more hours of care.
In 2013/14, among long-stay home care patients with unpaid caregivers, one third had caregivers who experienced distress, anger or depression in relation to their caregiving role, or were unable to continue in that role. That rate of distress, at 33.3%, had more than doubled from 15.6% in 2009/10. Over the same period, the proportion of patients with caregivers who were not able to continue looking after them also more than doubled, to 13.8% from 6.6%.
"Watching someone we care about suffer from prolonged illness or declining health is always difficult, so it's not possible to completely eliminate caregiver distress," says Dr. Joshua Tepper, President and CEO of Health Quality Ontario. "But caregivers should not have to endure avoidable stress."
Home care is a priority for many organizations in the province, and measures to improve supports for unpaid family and other caregivers who help look after home care patients are being developed by many groups. The Ministry of Health and Long-Term Care speaks to the need to improve home care in its strategy document Patients First: A Roadmap to Strengthen Home and Community Care.
KEY REPORT FINDINGS:
Long-stay home care patients cared for by family members, friends or neighbours became collectively more cognitively impaired, more functionally disabled and sicker between 2009/10 and 2013/14.
The unpaid caregivers - family members, friends and neighbours - who helped look after long-stay patients were generally more distressed the older, more cognitively impaired, functionally disabled and frail the patients were.
To provide real-life perspective on the complexity of the issues behind the data and the stressors faced by caregivers, Health Quality Ontario consulted a panel of caregivers who have provided care for a long period of time. They described caregiving as rewarding but extremely difficult, very time-consuming and tremendously stressful, leaving little time for jobs, social activities, hobbies or any other pastimes.
Health Quality Ontario, the provincial advisor on quality in health care, reports to the public on the quality of the health care system, evaluates the effectiveness of new health care technologies and services, and supports quality improvement throughout the system. Visit www.hqontario.ca for more information.
To view the entire The Reality of Caring report, visit www.hqontario.ca
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