Guiding Family Caregivers of People at the End of Life: A Handbook (2016)

What is the Caregiver Guide Handbook?

Caregiver Guide - Cover _Small - ENFamily caregivers of people at the end of life experience decreased wellbeing while providing care and in bereavement, even when the patient is receiving specialized palliative care. In addition to the psychological, physical, and financial stresses associated with caregiving and losing a loved one, most neglect to care for themselves. While providing care, this is partly due to a lack of time, and partly due to feeling that everything must focus on their ill loved one. However, if caregivers don’t take care of themselves, not only will their own health suffer, but the patient may need to be admitted to a hospital earlier than otherwise, if the caregiver becomes exhausted. Furthermore, many patients are concerned about the toll that their condition is taking on the caregiver.

The Caregiver Guide Handbook was created as the basis of a training program for volunteer Caregiver Guides and for them to use throughout their service. This was part of a research project to develop and implement a volunteer Caregiver Guide service to enable caregivers of people at the end of life to cope and maintain their own wellbeing in the patient’s last months and the first 3-6 months of bereavement. The goal of the research was to learn about the impact of the service on all involved and to improve it based on ongoing evaluation. The research project was funded by the Max Bell Foundation.

The aim of the service was to provide family caregivers with knowledge, support, and resources in order to empower them to provide care and to adjust in the first months of bereavement, while maintaining their own long-term wellness. The Guides aimed to foster the family caregivers’ sense of control and help them to embrace solutions that fit with their individual values. The same volunteer Guide supported the caregiver throughout. No direct care was provided for the patient, but the caregiver was aided in finding and encouraged to use existing resources to provide such help as needed.

The Guides bolstered the caregivers’ abilities to cope by guiding the caregivers to find resolutions to their problems where possible and providing emotional support and concern for the caregivers’ own wellbeing. For issues where there was no solution, the Guides enabled the caregivers to adopt a different perspective and approach, bringing a new meaning to the situation. Most caregivers reported that the volunteers filled a unique role in their life, as someone with lay knowledge about, and sometimes personal experience of, their situation, who was not a family member or health care provider, and was the only person with a primary focus on the caregiver’s own wellbeing. Figures 1 and 2 on the next page illustrate what the Guides did for the caregivers and what the team leaders provided for the Guides.

For more information, please contact [email protected]

Created on behalf of the project team with Guide leaders,

Robin Cohen Signature

S. Robin Cohen, Ph.D.
Professor, Departments of Oncology and Medicine, McGill University
Staff Investigator, Lady Davis Research Institute, Jewish General Hospital

Caregiver Guide - Figure 1Caregiver Guide - Figure 2