Caregiver Support and Wellbeing Priority Project

Caregivers - individuals who provide on-going care and assistance to family members and friends, in home or institutional settings, who are in need of support due to physical, cognitive, mental health or addiction conditions - play an essential role in the delivery of health care.   You meet caregivers every single day of your life.  Its your co-worker who checks in on his or her parents, its your sister or your brother who is caring for a dependent child, its your own mother or father supporting each other through health issues, its YOU!!!

Caregiver Support and Wellbeing Priorty Project Report - NEW 

In July the Caregiver Support and Wellbeing Priority Project Final Report was presented to the Board of the Central East LHIN.  The project report, prepared by the Caregiver Support and Well-Being Project team provides an overview of the findings regarding caregiver needs and offers recommendations to support caregivers within the Central East LHIN. The report also details a planning and service framework for a Caregiver Support Centre model providing a structure to deliver much needed supports to caregivers.  Information posted in other sections on this webpage detail the process that was used to gather information to support this report.

In the acknowledgement section of the report the Project Team offered their thanks to the Central East LHIN for acknowledging that caregivers are essential to the health care system and for recognizing the value of their input in the planning process; the members of the Central East LHIN Caregiver Support Charter Writing Group and the Durham East Collaborative for their vision, insight and dedication to ensuring that caregivers have a voice and that it is heard; the Central East CCAC for their enthusiastic support of providing resources and leadership as the Host Service Agency and the organizations and their boards who support the integration process by ensuring their staff be part of this project.  A special thank also went to the Caregiver Support Project Team and members of the task groups. "Your wisdom, dedication, knowledge and spirit in completing the work of this project will ensure that caregiver’s needs are acknowledged and supported."

To download a copy of the report, please click here.

The report will now be used by staff as a planning document to support ongoing planning and integration activities.  For more information, please contact the Central East LHIN at centraleast@lhins.on.ca.

Development of the Report

Community Consultation

In October and November 2008 the Project Team met with caregivers in communities throughout the Central East LHIN to get feedback on a chart that had been developed outlining the definition of caregiver support and the components that make up a caregiver support system.   The team was pleased to have received over 250 responses from caregivers throughout the Central East LHIN.   The information received helped the team to understand the issues and  to recommend enhancements which are necessary to support caregivers.   The consultation feedback was summarized and is posted below.

Health Service Provider Feedback

Health Service Providers wer asked to click on the links below to view the Caregiver Support Framework and complete the "Survey for Health Service Providers."

Completed surveys were emailed to Susan Locke, Project Co-ordinator at Susan.Locke@ce.ccac-ont.ca.    .

Project Team

Caregiver testimonials

When I am asked to describe what it is like to be a caregiver....(more)

Cheryl McCarthy

CAREGIVING for me means it’s not about me it’s about Kathy (my wife)...(more)

Milton Moonah

I have had the unique experience of viewing care giving from both sides – as a patient and as a caregiver...(more)

Janet Irvine

The Project Team

The Caregiver Support and Wellbeing Project Team consists of caregivers and healthcare professionals from all areas of the Central East LHIN who are working on the goal to improve the system of support for caregivers. For a list of Project Team members, please click here.  

The Project Charter

The Caregiver Support and Wellbeing Priority Project is one of a number of projects that have been approved and funded by the Central East LHIN.  This project was identified as a priority by the community in the LHIN's Integrated Health Service Plan or IHSP. To view a copy of the charter, please click here.

Some interesting facts

The important role that caregivers play within the health care continuum is well documented:

  • “In North America today, the aging population, coupled with fundamental changes in the provision of health care services, is translating into an increased requirement for individuals to provide in-home care for family members in the home who have chronic health problems or disabilities” (Decima Research, 2002, p.1).
  • “Caregivers care for individuals from all age groups, across all stages of life, and across the continuum of care” (VON Canada, 2005, p. 5 ).
  • “There are approximately 4.2 million people with disabilities in this country” (Canadian Association for Community Living, 2002, p. 1) “The majority of people who need disability supports -- children, youth, and adults – are supported entirely by their family members and friends” (Canadian Coalition for Family Supportive Policy, 2004,p2)
  • “A shift away from institutionalizing has left the bulk of caregiving (for seniors) to family members and friends (Cranswick, 2003, p. 8). “Among all seniors in Ontario who received help because of a long-term problem, about three quarters received this help, in part or in total, from informal sources (a spouse, relative or friend)” (Turcotte M. & Schellenberg, 2007, 2007, p. 166). “In many cases, the presence and commitment of a close family member, a spouse or a neighbour can make an important difference in their quality of life, increasing the possibility that they can stay in their home”. (Turcotte M. & Schellenberg, 2007, p 161)
  • Dupuis, Epp & Smale (2004) note that approximately half of the individuals with dementia in Canada live in the community and that almost all of these individuals (94%) are cared for by family or friends up until these caregivers are no longer able to maintain them at home.
  • Family and friends often provide most of the care and support to people with mental illness. “Numerous studies have shown that involvement (of family and friends) in this role results in significant benefits for both the individual and the health care system…. (including) decreased rates of hospitalization and relapse, enhanced adherences to treatment choices, increased rates of recovery, decreased involvement with the criminal justice system, (and) savings to the mental heath and addictions system”. (Family Mental Health Alliance, 2006, p 6).
  • “It is estimated that caregivers provide 80% of the required care in the home” (Canadian Caregiver Coalition, 2003).