Cuts drive crisis for unpaid women caregivers

Cascading health care cuts are resulting in significant problems for home care patients and their families, seriously undermining the main defense the government makes for its policy of hospital and long-term care cutbacks. 

With hospital cutbacks and a virtual freeze on long-term care beds, home care and unpaid caregivers must now take care of sicker and sicker patients. This change in home care has been sudden and dramatic, as demonstrated in the graph below from the the Ontario Association of Community Care Access Centres (the OACCAC represents the public sector organizations which manage home care for the government).  

The OACCAC suggests this shift means home care now replaces 150 long-term care homes, each with a capacity of 130 residents. 

The OACCAC estimates cost pressures of about 5% per year to offset demographic changes and for the absorption of patients that would otherwise have been treated in hospitals or long-term care.  The OACCAC adds that funding has fallen short of that level in recent years, reducing care.

But what does increasing the level of illness in the home care sector mean for patients and the family members and friends who must take care of them? 

A recent study suggests  "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."

The Reality of Caring focuses on "long-stay home care patients" -- a group of about 200,000 patients -- one-third of all home care patients whose care accounts for about 60% of the contracted funding for home care. 

The study (comparing 2013-14 with 2009-10) finds that this group of patients are becoming older and are more affected by "cognitive impairment, functional disability and frail health." More of them have dementia, more have difficulty with basic activities (such as washing themselves or eating), and more are in declining health.

The overwhelmingly majority of this group receives assistance from unpaid caregivers: fully 97%. Of this group, 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 by 2013-14 compared with 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%.

Not surprisingly, more problems are experienced by caregivers when the patient is sicker:

• Among patients with moderately severe to very severe impairment in cognitive abilities, 54.5% had caregivers who were distressed. 
• When patients needed extensive assistance with or were dependent in some activities of daily living, 48.7% had distressed caregivers. 
• When patients were at the two most severe levels of health instability, 56.1% had caregivers who were distressed. 

This is significant as these long stay patients became more cognitively impaired, more functionally disabled and sicker between 2009/10 and 2013/14:

• Those who had Alzheimer’s or other forms of dementia increased to 28.6% from 19.5%
• Those with mild to very severe cognitive impairment increased to 62.2% from 38.1%
• Those experiencing moderate to very severe impairment in ability to perform activities of daily living such as washing their face or eating increased to 44.5% from 27.6%
• Those with slightly to highly unstable health conditions associated with greater risk of hospitalization or death increased to 43.2% from 27.3%
• The patients averaged a year and a half older than in 2009/10, increasing from 77.4 years to 78.9 years. 

Those caregivers who experienced distress provided more care.

• On average, patients whose caregivers experienced distress received 31.5 hours per week of care from those caregivers, compared to the 17.1 hours per week received by patients whose caregivers were not distressed.

The unpaid care is a huge amount of work.  Yet the study also notes that "families and the pool of potential caregivers they provide are getting smaller, and the women who have historically done much of the most intense caregiving are increasingly employed in the workplace instead of available at home to look after ailing or frail family members."

Requiring women to provide 17 (never mind 31) hours of unpaid care per week is obviously a significant burden. With more cuts to hospitals and long-term care coming, the burden of care for unpaid caregivers will, however, increase.  This may backfire -- as the study notes, if unpaid caregivers are unable to provide care that will drive extra costs for long-term care and hospital care.   

The home care patients are much sicker than they were only a few years ago, increasing the burden for the unpaid caregivers.  The result for the unpaid caregivers -- usually women -- is increasing distress, anger and depression, with a significant portion unable to continue. More paid hours for PSWs and other home care workers is obviously part of the solution.

The study -- released by the government sponsored organization Health Quality Ontario -- does not specifically connect this "perfect storm" to the ongoing health care cuts. But it is clear those cuts are driving sicker patients to home care and unpaid caregivers -- and now we know those women caregivers are basically being thrown under the bus.  

The main government response to the cuts in hospital and long-term care is to suggest  that they are doing more in home and community care.  This study suggests this response has big problems. 

Update May 16, 2017: A new study published by the New England Journal of Medicine and funded by the Canadian Institute of Health Research, the Ontario Academic Health Science Centre, the Ministry of Health, and the University of Toronto also shows major problems for caregivers.  Specifically, in this case, very high levels of depression among caregivers (who were mostly women) of patients who survived a critical illness. 

The authors note: "Few resources are available to support caregivers of patients who have survived critical illness; consequently, the caregivers’ own health may suffer. The caregivers’ mean age was 53 years, 70% were women, and 61% were caring for a spouse. A large percentage of caregivers (67% initially and 43% at 1 year) reported high levels of depressive symptoms."