Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan

Abstract

Background To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. Methods We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. Results The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. Conclusions We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end‐of‐life

“…This process and the subsequent adaptations adopted for the Family Carer Decision Support (FCDS) intervention have been reported elsewhere. 11,20 Findings of this study complement previous work involving the engagement of older individuals with multimorbidity 21,22 ; as well as those living with dementia, as research partners. 7,8 Identifying individuals who are representative of the diverse individuals living with the disease and their care partners and striving to develop a trusting relationship with them while uplifting the capacity of the research team are keys to effective PPI partnerships.…”

“…Identifying individuals who are representative of the diverse individuals living with the disease and their care partners and striving to develop a trusting relationship with them while uplifting the capacity of the research team are keys to effective PPI partnerships 21 . We and others have also established the critical importance of developing a trusting relationship with individuals with lived experiences through respect; and open and skilful communication strategies for mutually fulfilling research partnerships 7,10,11 . Like Ganann et al, 22 our findings also attested to being aware of the potential burden people can experience with participation in research activities.…”

“…The mySupport study is an international multidisciplinary implementation study to support family carers of persons with advanced dementia living in LTC homes, in making complex decisions surrounding EOL care 11 . The study was conducted in Canada, the Czech Republic, Ireland, Italy, The Netherlands and the United Kingdom.…”

The impact of the mySupport advance care planning intervention on family caregivers’ perceptions of decision-making and care for nursing home residents with dementia: pretest–posttest study in six countries

“…This reflects a broader definition of ‘advance care planning’ in dementia, including family caregiver engagement in advance care planning as proxy for the person with dementia who does not have the capacity to partake [ 15 ]. The intervention was adapted for implementation across countries by the international consortium [ 7 , 16 , 17 ]. A full description of the intervention has been published before [ 7 ].…”

“…Family caregivers received an educational booklet about comfort care for people with dementia at the end of life [ 17 , 18 ]. The booklet discusses the dementia trajectory, possible symptoms and complications, shared decision-making, palliative care options and the dying phase and grief.…”