Over 35 per cent of the Canadian workforce are carers. The balancing act is taken to manage employment responsibilities and give care not only damaging to the Canadian economy with an estimated loss of $ 1.3 billion a year, it also leads to negative health consequences for spouses, t children, neighbors, and friends who care for them a loved one.
Nathan stall know the toll that care can take. The PhD candidate at the Institute of Health, Management and Evaluation Policy, watched his grandmother undertake the role of primary carer to his grandfather with dementia. Stall's own health grandmother's stress and neglect to look at the way in which care is delivered is different.
“We do not provide much training for carers but we do not expect them to carry out complex tasks such as managing medication regimes, dealing with complex behaviors and being navigators and advocates for vulnerable individuals,” says Stall, who is also a trainee with # 39 medicine department Eliot Phillipson Scientist Training Program.
Stall recently published an editorial in the Canadian Medical Association Journal which expands on the nature of care and its impact on the Canadian health system and the economy. Rebecca Biason IHPME continued with Stall to learn more about care in Canada and the ways in which many carers are often overlooked.
Are we willing to support caregivers in our aging population?
The short answer is: yes.
Alongside changing demographics showing that we have an aging population, there are also social changes in the family structure which show that a pool of carers is also reducing. Older adults are less likely to be married or have a spouse or partners to care for, are less likely to have children who are our adults and, more often than not, their families are more dispersed.
There has been a lot of talk about promoting home care, nursing, personal support workers and respite care, but access to these services is fairly patchy across the country and although they are concentrated on the cared for, few o support available to carers themselves. Our situation is difficult for those who care to find it, try to navigate through the system of care and rehabilitation in the home, to acute care, long term care and more t with little training and support. We often fail as a healthcare system to engage carers even on these transfers through the system and discuss whether they are even ready and able to undertake this extra pressure.
In your research, you have found that some people who care for people with dementia experience some of the highest distress rates. How does this affect their health?
There is very good data available showing that caring for someone with dementia is similar to a chronic stress experience, which has a host of negative consequences, including increased mortality. Caring is often a 24-7 job and this can leave the caregiver separate from their support networks or only regular social interactions that would normally promote positive mental health.
There are also significant financial strains for many carers, who use retirement savings to pay for care costs, or are no longer able to work and leave their jobs together.
This type of chronic stress can also lead to various poor outcomes associated with cardiovascular disease and a higher risk of depression for the carer, but it can also have a negative impact on the person being cared for. Although we have limited data on this, we know that a person with dementia who is being cared for by a respected caregiver is more likely to be institutionalized, exacerbating their behavioral and psychological symptoms of dementia.
What are some other concerns about caring? Canadians not know about them?
Women represent just over half of all caring roles, and women are more likely than men to provide more hours of care and provide care on a regular basis. This has very specific implications for women. Although we know that over a third of the Canadian workforce balance caring with employment, women are more likely than men to undertake tasks that require regular or daily attention – supervising medication administration, bathing, feeding, etc – as well as seek to manage responsibilities at work. As a result, they are more likely to refuse opportunities and promotions or restrict their working hours – all showing a gender gap in care delivery.
What would improved support systems for carers look like?
We need to do better work to ensure financial stability for carers, so they are not unfairly penalized. One of the most common supports currently in place is tax credits. In Ontario, these cannot be repaid, meaning they benefit individuals on higher incomes rather than those who really need it, and often it is not. Most people are aware that these tax credits even exist. In Nova Scotia, low-income care donors are paid a monthly salary, something that could be explored. To prevent the pushing of caregivers out of the workforce, flexible workplace policies and absence policies would also be beneficial.
There are models based on evidence that show that care giving support programs help to reduce stress for the person who cares, but it is often challenging t find programs of this kind across the country. We need more of them because they provide carer-specific educational support, counseling and psychotherapy support which is particularly useful for dementia care carers.
We have ways to go, but small changes are taking place that show that people in the healthcare system and government healthcare policy are taking notice. They try to include care and support donors and include them so that they are no longer on the periphery suffering in silence.