Education on grief, loss and dementia for family caregivers
Helping caregivers develop strategies to manage their health and emotional well-being
Grief in family caregivers of people with dementia originates from the loss in the quality of their relationship as well as the loss of roles, control, intimacy, social interaction and communication. Grief in its various forms is a constant companion of dementia caregivers and can be expected to increase at every transition along the journey.
At Island Health, a regional health authority on Vancouver Island, growing awareness of the toll that dementia care can have on family caregivers sparked research into identifying interventions and education programs that assist caregivers in managing their grief. Caregiving has been associated with a wide range of physical and psychosocial symptoms, including depression, stress and fatigue; feelings of anger, guilt, frustration and loneliness; and a decrease in well-being and life satisfaction.
During the study, the investigators learned that little or no accurate information about grief is available to assure caregivers that grief is a normal reaction in the face of significant loss.
The caregivers who took part in the research were initially reluctant to acknowledge their pain and uncomfortable about focusing on themselves. They also thought that expressing grief would somehow take away from the losses their loved one with dementia was experiencing. Most of the caregivers were unaware that physical, behavioural and social symptoms might, at least in part, relate to grief and that fatigue from caregiving can be exacerbated by the energy drain related to grief.
Conducted by Island Health, the Alzheimer Society of British Columbia and the University of Victoria Centre on Aging, the study demonstrated that coping and resilience can be improved through education about grief and strategies to manage it.
Six months after the study concluded, the clinical nurse specialist involved in the original research used the knowledge gained to initiate the development of a DVD on grief, loss and dementia that would educate and inform clinicians working with caregivers or be used by caregivers themselves. In leading this project, the CNS collaborated with the health authority’s multimedia department and some of the caregivers who had participated in the study.
Eight caregiver participants volunteered to allow their situations and their voices to be used in the development of the DVD. The CNS drew on information on grief management from the literature, supplemented by key research findings from the study and by the lived experiences of the caregivers themselves.
The CNS and the caregivers had established trusting relationships during the study. As well, the caregivers had already benefited from the interventions identified in the study and wanted to share them with others. The CNS received funding for the project from the health authority and worked with the multimedia department on forming a production team.
Over the next year, the CNS met regularly with all team members to develop the DVD.
The first three chapters of the DVD feature family caregivers speaking frankly about the range of emotions they experience and the importance of acknowledging and naming grief. They identify common reactions to grief and talk about the stress management and support strategies they find helpful. The fourth chapter, designed for health-care professionals, presents the rationale for the original study and its findings and highlights the importance of acknowledging caregivers’ grief at every transition of the dementia journey.
To obtain feedback on the DVD before release, the CNS screened it for groups of health-care professionals throughout Island Health and at public forums. People were enthusiastic about the DVD, but it was suggested that a printed resource was also needed. One of the study’s intervention facilitators agreed to develop a workbook to accompany the DVD.
The workbook contains information sheets and self-assessment exercises that help caregivers understand and work through their grief, either in a support group or on their own. It also has suggestions for ways they can maintain their mental, physical and spiritual wellness. It features photos of the DVD participants along with some of their reflections.
The package was officially launched in 2012. The CNS sent copies to geriatric outreach programs, libraries, educational institutions and organizations and agencies that support seniors and caregivers in the province. To make the resource easily accessible for caregivers, the workbook and chapters of the DVD created specifically for them were posted on the Seniors’ Health section of the Island Health website This approach to dissemination was taken to support the needs of caregivers, who often have little time available for finding information and seeking help.
About a year later, the CNS followed up with caregivers and clinicians who had used the tools, through phone and face-to-face interviews. Caregivers were asked to describe the ways they find the tools to be helpful; clinicians were asked to describe how they are using the tools in practice and to assess their effectiveness in supporting caregivers.
Both groups reported that the tools empower caregivers with knowledge and skills related to self and self-care. Caregivers expressed appreciation that they now have access to practical strategies to reduce stress and increase their ability to cope. Many stated they often refer to these strategies and will use them as a review at future transitions in the dementia journey. They also noted that working through their feelings of grief had renewed the relationship with the loved one with dementia and brought them closer. Many said they had a sense of renewed hope.
Feedback from clinicians indicated they were pleased with the practicality and flexibility of the resource: they used both tools or just one, and either reviewed the material with the client or had the client work through the material on their own. Some observed that they have a better understanding of the assistance caregivers need in figuring out how to take care of themselves and how to ask for and accept help.
The DVD has garnered national and international interest, in part as a result of recognition coming from a QUESTAR international award for video communications (2012 Best Health Awareness Video).
Lessons learned and next steps
The participation of the caregivers gave credibility to the project and helped engage other caregivers because of the obvious authenticity of the content. The CNS was gratified to find that positive changes in practice can be implemented relatively quickly by engaging research participants and integrating study findings in the development of practical learning tools. She learned the importance of designing tools that are appropriate for use in groups or by individuals and that can accommodate different learning approaches and settings. For clinicians who want to use the tools, it is helpful for them to have a working knowledge of dementia, including its different stages as well as the psychosocial/familial and interpersonal implications. They need to understand loss and grief as it relates to caregiving, be able to create a safe and supportive environment and manage varying emotions and family dynamics.
As a result of the success of this project, the CNS is working with the multimedia department and two caregiver advisory groups on developing a 10-part video demonstration series to guide caregivers in assisting their loved one in performing activities of daily living. The focus of the series is caregivers helping caregivers.
- Grief, Loss and Dementia: Caregivers Share their Journeys [DVD]. (S. Somers & MultiMedia Services Island Health Authority)
- Understanding and Managing Loss and Grief: A Workbook for Dementia Caregivers. (B. Andersen & MultiMedia Services Island Health Authority.)
- MacCourt, P., McLennan, M., Somers, S., & Krawczyk, M. (2016). Effectiveness of a grief intervention for caregivers of people with dementia. Omega (Westport). Advance online publication. doi:10.1177/0030222816652802