Surviving spouses' experiences of the end-of-life phase of the dementia journey

The population of Canada is aging and the main risk factor for developing dementia is age. As dementia is a terminal illness, significant challenges lay ahead for health care systems, health care providers, and families of people with dementia. Spouses of people with dementia are often primary care givers. Their experience is understudied and not well understood. The purpose of this study was to explore the lived experience of spouses as they journeyed through the end-of-life phase of dementia with their partners who resided in long-term care facilities. These spouses were challenged with journeying with their loved ones through the dementia trajectory until death and making ethically complex end-of-life decisions on behalf of their partners. Hermeneutic phenomenology, as articulated by van Manen, was implemented, to understand the experiences of care partners from couples in which one of the partners had died with dementia in long-term care. Five spouses participated in open-ended, semi-structured research questions delivered through conversational interviews. Themes were revelatory of the spouses’ experiences and included: deficits in education about dementia provided to spouses, deficits in knowledge of health care providers about dementia, relationships of the couples, relationships with health care providers, dignity of the partner, sources of support encountered by spouses on the journey, and end-of-life decisions and outcomes. Knowledge of spouses’ experiences contributes to the knowledge of practitioners and may guide development and provision of services, education, governmental policy, policy in health care facilities, and support programs for both partners in couples experiencing dementia.