‘I want to feel at home’: establishing what aspectsudof environmental design are important to peopleudwith dementia nearing the end of life

摘要

Background: The design of environments in which people with dementia live should be understandable, reinforceudpersonal identity and maintain their abilities. The focus on supporting people with dementia to live well hasudomitted considering the needs or wishes for a supportive physical environment of those who are nearing the endudof their lives. Using a combination of focus groups and a Delphi survey, this study explored the views of peopleudwith dementia, family carers and professionals on what aspects of the physical environment would be important toudsupport a good quality of life to the very end.udMethods: Three focus groups were carried out in three cities along the East Coast of Australia using a discussionudguide informed by a literature review. Focus groups comprised recently bereaved family carers of people withuddementia (FG1), people with dementia and family carers of people with dementia (FG2) and practitioners caring forudpeople with dementia nearing or at the end of their lives (FG3). Focus group conversations were audio-recordedudwith participants’ consent. Audio files were transcribed verbatim and analysed thematically to identify environmentaludfeatures 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 forudpeople with dementia nearing the end of life was defined.udResults: Eighteen people took part in three focus groups: two with dementia, eleven current or recently bereavedudfamily carers and five practitioners. There were differences in opinion on what were important environmentaludconsiderations. People with dementia and family carers identified comfort through engagement, feeling at home,uda calm environment, privacy and dignity and use of technology to remain connected as important. Forudpractitioners, 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 featuresudderived from analysis of focus group transcripts, with fifteen features agreed.udConclusions: The fifteen features are compatible with the design principles for people with dementia who areudmobile, but include a stronger focus on sensory engagement. We suggest that considering these features as partudof a continuum of care will support good practice and offer those with dementia the opportunity to live well untiludthe end and give their families a more positive experience in the last days of their lives together.