Who is looking after you as a caregiver?

This article was published in The West End Times December 3, 2011.

I know I have talked about “informal caregivers” as those who care for a loved one seem to be called in the literature. I still have concerns that because there is not a lot of help for families, often signs of exhaustion go unnoticed until it is too late. I look at the cost of long term beds and the costs of beds in hospitals labeled as “chronic” beds, and shake my head. I came across a report written in 2005 by the Centre for Rural and Northern Health Research, Laurentian University. The report was submitted to Home and Continuing Care Policy Unit in Health Canada. I will outline some of the highlights in it. This report examines the potential impact of telehomecare on informal caregivers. You can probably see why I gravitated to it. It covers the two obsessions I have….one, worrying about family caregivers and two, the use of technology as a potential solution.

The researchers did a literature review that focused on studies of telehomecare and caregivers with direct relevance to Canada for documents published between 1990 and the first three months of 2005. Imagine how long ago discussions about this began and how long ago reports like this were submitted. Their report was the result of a summary of 48 telehomecare documents and 12 informal care documents. From their review they came up with many positive recommendations making it clear that there is potential for facilitating access and providing services to caregivers using technology. Is there the will? Do reports sit on shelves? Is anything done with this valuable information? Six years later and still the “same old same old.”

The potential for telehealth to address some of the issues related to the expansion of homecare has been discussed in the Kirby & LeBreton 2002b; Romanow 2002 reports. This report examines the overlap between telehealth and homecare with a special focus on the impact of telehomecare on informal caregivers. Why is the information in these reports not reflected in our policies?

Informal caregivers provide unpaid care to frail, chronically ill or disabled individuals. Informal caregivers are predominately family members (spouses, children, siblings, etc.), but may also include friends/neighbours and volunteers (e.g., meals on wheels). Most informal care is given in the home, but can also be provided in institutional settings such as hospitals and nursing homes. Think about how many of us spend days in hospitals and long term care facilities caring for our loved ones. Homecare is considered to be “one of the fastest growing components of the health care system” (Romanow 2002: 171). Why are we not allocating more money to support for this growth?

Informal caregivers are expected to provide the physical, mental and financial costs that they incur in providing this care. 46% of Canadian informal caregivers reported that they had “experienced stress as a result of providing care” and 14% reported experiencing “physical pain or discomfort as a result of providing care” Some researchers have compared caregiving to being exposed to a “severe, long-term, chronic stressor.” In Canada, 80-90% of care in the home for frail, chronically ill or disabled individuals is not publicly funded. The care and cost burdens fall primarily on the shoulders of the patient and immediate family but may also extend to other relatives, friends or volunteers.

Why I am on about this again is because I have seen the stress caring places on families. Christmas is almost here and although it can be fun, more stress can also be added to the already tired caregivers. If you haven’t already noticed, I have more questions than answers although I think the answers are obvious. Where are our politicians? Where are the financial statements measuring the cost of unnecessary hospitalizations and long term care placements vs the cost of supported home care. If quality of life issues do not concern those who make policy decisions, shouldn’t the rising costs of healthcare shock them into action? So far it seems to be “maybe if we ignore it, it will go away.”

Look after yourselves.

Thoughts, comments, suggestions are always welcome.
Contact me at donna@ashcanada.com
Health Access, Home and Nursing care