It is estimated that the number of individuals worldwide affected by dementia will reach 152 million by 2050. With an increase in the number of people living with dementia globally, palliative care and end-of-life care are becoming increasingly important in dementia care. However, there is a lack of evidence on the perception of a good death for people living with dementia.
Mamun (2023) and colleagues conducted a study to explore the perception of a good death for people living with dementia as well as among family caregivers, physicians, nurses, and care workers.
The study was conducted in six prefectures in Japan and involved in-depth interviews and focus group discussions with people living with dementia, family caregivers, physicians, nurses, and care workers from October 2019 to March 2020. Convenience sampling was used to recruit participants from dementia outpatient clinics and daycare centers. Recruitment continued until saturation – the point at which new interviews offered no new information regarding the research objective compared to data obtained from prior interviews – was reached.
Transcripts from 33 interviews and focus groups, involving 41 individuals, were transcribed and analyzed. The following themes were derived:
- Painless death, including minimal suffering, avoidance of life-sustaining treatment, and free from sadness.
- Dying in a preferred environment encompasses various perspectives shared by participants, with noted differences in preferred location by people living with dementia, who identified “familiar place” as preferred, and their caregivers, who identified healthcare facilities as preferred.
- Family’s coping with loss was identified by all participant groups except for the people living with dementia. Family caregivers identified the need to learn about physical and mental changes caused by dementia.
- Maintaining regular life acknowledges that a good death is not only the moment of death. People living with dementia expressed a desire to enjoy daily life until death, and others focused on how to support and enable this.
- Living with respect encompasses the desire for people living with dementia not to become a burden and desire for family caregivers to treat their loved ones the same as before they were diagnosed with dementia.
- Preparation for death including advance care planning and completing unfinished tasks, was found to be an integral component of a good death.
This study revealed that a good death for people living with dementia and their caregivers and care providers cannot be considered only in the moment of death but the journey toward death. These findings can be used to enhance dementia care and emphasis the need for those with dementia to express their own understanding of a good death early in their disease trajectory.
Source: Mamun, M. R., Hirakawa, Y., Saif-Ur-Rahman, K. M., Hong, Y. J., Song, Z., Yoshida, Y., & Yatsuya, H. (2023). Good death for people living with dementia: a qualitative study. BMC geriatrics, 23(1), 665.