Using a Supported Self-Directed Care Model to Assist At-Risk Informal Caregivers in Improving Toronto Seniors’ Well-Being

Rationale / Objectives

The family and friends of seniors living at home who informally provide care for them are valuable contributors to the viability of Canada’s healthcare system going forward. This “Back-to-the-Village” approach eases the burden on the strained health system, by supporting informal caregivers to prevent them from burning out.

Project/Program Description & Major Achievements

The Caregiver Support Program (CSP) provided informal caregivers directly with funding based on a budget that addressed self-identified needs for goods and services for the purpose of providing care. The program also provided access to a professional care coordinator. Caregiver feelings of empowerment and appreciation increased for the majority of caregivers. As a result, more than 60% of care recipients were able to continue living at home, enabled by support from their caregivers.

Lessons Learned

Family members serving as caregivers solved the language barrier problem, and increased availability of care for the recipient, especially during off-hours when hired help and healthcare professionals were not traditionally available. The Alzheimer Society of Toronto found that it was important to be flexible in responding to caregivers’ concerns. The implementation plan should also be revised to reflect changing circumstances. Assessments should be streamlined for efficiency. The method for distributing funds (and other administrative protocols) should also be decided on at the start of the project, with the knowledge that there are several possible approaches.

Further Description

The Caregiver Support Program (CSP) arose in response to the Ontario Ministry of Health and Long-Term Care’s Aging at Home initiative. Implemented in 2011 and funded by the Toronto Central Local Health Integration Network, it involved 321 informal caregivers and 80 Care Coordinators in Ontario. It was developed by the Alzheimer Society of Toronto. Informal caregivers provide seniors with assistance in transportation, personal care, activities of daily living and other tasks on a voluntary, unpaid basis. This can lead to stresses of a physical, emotional or financial nature. Patients over the age of 55, residing in the region managed by the Toronto Central Local Health Integration Network, and receiving at least 10 hours of direct care from an informal caregiver were recruited for the program. In addition to providing informal caregivers with funding of up to $1500 per year towards necessary goods and services for the care recipient, CSP’s professional care coordinators (registered nurses, physiotherapists, occupational therapists, or certified social workers) were available to assist caregivers who were unable to cope. The defining feature of this supported self-directed care model lay in its empowerment of caregivers. Traditionally, service provider agencies received funding and made decisions with regards to patient care. CSP’s model allows the caregiver to choose their own vendors, and CSP makes arrangements to have funds distributed to the chosen vendors. Some caregivers used the funding to reduce their workload by hiring other relatives as caregivers. When the project wrapped up in March 2013, 203 caregivers to the original 321 participants were continuing to actively provide care.

Major Achievements

Questionnaires were mailed to caregivers one month and six months after care plans were implemented with results shown in the table below.  Accreditation Canada deemed this intitiative a Leading Practice.

Metric Result Detail
Caregiver Participation 63% are still enrolled at 18 months following the end of the project
Caregiver Satisfaction 91% reported high satisfaction with the program at 3 months and 6 months following the end of the project
Caregiver Stress 4.26 out of 10 mean score remained stable
% of Caregivers who Remained in Current Living Environment & reported enjoying a better quality of life 60%