How to provide existential and spiritual support to people with mild to moderate dementia and their loved ones. A pilot study

Abstract

Background People with mild to moderate dementia and their loved ones may experience strong existential and spiritual challenges due to the disease. People with dementia could therefore benefit greatly from ongoing conversational support. Within the literature and in supportive practice, there are very few tools that help professionals provide this type of support. Professionals may therefore be unaware of, or uncertain of, how support can be given. Objective To develop and test support approaches that may enable professionals to better conduct conversations with attention for existential and spiritual issues. Methods Participatory action research was conducted with dementia care professionals who spoke to 62 clients and 36 loved ones. Research consisted of two cycles of analyzing support, formulating strategies to try, testing and reflecting on the success of these actions and formulating new ones. The Diamond model for existential and spiritual issues regarding mild to moderate dementia, developed in previous research, was used as a framework. Results Five types of approaches, corresponding to the five fundamental polarities within the basic framework, were found to be helpful in alleviating tensions and bolstering strengths. For issues of self-confidence and -worth, an approach of exploring the felt self was developed; for issues of capacity and adaptability, an exploring daily routines approach; for issues of security and loss, an exploring a trinity of needs approach; for issues of burden and enrichment, an exploring memory approach; and for issues of faith and meaning, an exploring ones’ predicament approach. When exploring these approaches, participants found sets and sequencing of questions and prompts to be helpful and transformative. Conclusion Professionals can use the Diamond framework to provide conversational support to alleviate tension, enhance meaning and bolster strength for clients and loved ones.