I want to feel at home': establishing what aspects of environmental design are important to people with dementia nearing the end of life

Abstract

Background: The design of environments in which people with dementia live should be understandable, reinforce personal identity and maintain their abilities. The focus on supporting people with dementia to live well has omitted considering the needs or wishes for a supportive physical environment of those who are nearing the end of their lives. Using a combination of focus groups and a Delphi survey, this study explored the views of people with dementia, family carers and professionals on what aspects of the physical environment would be important to support a good quality of life to the very end. Methods: Three focus groups were carried out in three cities along the East Coast of Australia using a discussion guide informed by a literature review. Focus groups comprised recently bereaved family carers of people with dementia (FG1), people with dementia and family carers of people with dementia (FG2) and practitioners caring for people with dementia nearing or at the end of their lives (FG3). Focus group conversations were audio-recorded with participants' consent. Audio files were transcribed verbatim and analysed thematically to identify environmental features that could contribute to achieving the goal of providing a comfortable life to the end. A list of design features derived from analysis of focus group transcripts was distributed to a range of experts in the dementia field and a consensus sought on their appropriateness. From this, a set of features to inform the design of environments for people with dementia nearing the end of life was defined. Results: Eighteen people took part in three focus groups: two with dementia, eleven current or recently bereaved family carers and five practitioners. There were differences in opinion on what were important environmental considerations. People with dementia and family carers identified comfort through engagement, feeling at home, a calm environment, privacy and dignity and use of technology to remain connected as important. For practitioners, design to facilitate duty of care and institutional influences on their practice were salient themes. Twenty one experts in the dementia field took part in the survey to agree a consensus on the desirable features derived from analysis of focus group transcripts, with fifteen features agreed. Conclusions: The fifteen features are compatible with the design principles for people with dementia who are mobile, but include a stronger focus on sensory engagement. We suggest that considering these features as part of a continuum of care will support good practice and offer those with dementia the opportunity to live well until the end and give their families a more positive experience in the last days of their lives together.