Cross-cultural conceptualization of a good end of life with dementia: a qualitative study

Abstract

Background Research on the nature of a “good death” has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models. Methods We combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies. Results Fourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: “Pain and Symptoms Controlled,” “Being Provided Basic Care,” and “A Place like Home.” Other themes were “Having Preferences Met,” “Receiving Respect as a Person,” “Care for Caregivers,” “Identity Being Preserved,” “Being Connected,” and “Satisfaction with Life and Spiritual Well-being.” “Care for Caregivers” showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes. Conclusions The common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model. Trial registration The Graduate School and Faculty of Medicine Kyoto University (R1924–1).

Trends in quality of care and dying perceived by family caregivers of nursing home residents with dementia 2005–2019

“…22,51 Although the EOLD-CAD items all assess aspects of quality of dying, the instrument does not cover the full concept of quality of dying, which may include aspects that are more difficult to assess such as retaining identity or dignity. 52 Nonetheless, other such measures do not perform better or properties are unknown. The EOLD-SWC and EOLD-CAD scales have been widely used after an early comparison of psychometric properties, 22 which facilitates comparison between countries.…”

Commentary: Can an effective end‐of‐life intervention for advanced dementia be viewed as moral?

“…However, it may be immoral to leave this solely in the hands of a document based on precedent autonomy which is a very limited format for people with dementia due to their reduced self‐determination. A cross‐cultural study on the conceptualization of a good end of life with dementia found that even in Western countries patients benefit from, and value, relationships more than full autonomy 19 …”

“…A cross-cultural study on the conceptualization of a good end of life with dementia found that even in Western countries patients benefit from, and value, relationships more than full autonomy. 19 We are aware that our approach of involving health care providers and family in assessing the desirability of end-of-life interventions may be viewed as paternalistic by advocates of individual autonomy and self-determination. In our view, however, issues such as ceasing assisted feeding are too complex to consider through the narrow lens of autonomy that is statically defined in a directive.…”

Family involvement in euthanasia or Physician Assisted Suicide and dementia: A systematic review

“…However, qualitative studies from eight countries show that relations are central to a good end of life with dementia. 13 Relations can be complex in dementia. Dementia can have a wide range of potentially detrimental social consequences such as isolation, exclusion, and social distancing of both the person and their close family members.…”

“…These studies concerning the role of family in euthanasia did not have people with dementia as their main target group. However, qualitative studies from eight countries show that relations are central to a good end of life with dementia 13 . Relations can be complex in dementia.…”