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

Abstract

BackgroundThe 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.MethodsThree 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.ResultsEighteen 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.ConclusionsThe 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.

Nature-based care opportunities and barriers in oncology contexts: a modified international e-Delphi survey

“… 37 Our findings further connect with research investigating other vulnerable patient groups such as patients with advanced dementia. Fleming and colleagues 38 confirm the effective role of environmental design in the care of this patient group. Their survey study shows strong agreement among healthcare experts about the importance of certain characteristics of care environments, which include: access to the outdoor and indoor nature (plants, natural light and fresh air), design that promotes sensory and social engagement and opportunities for privacy, safety and security.…”

“…Their survey study shows strong agreement among healthcare experts about the importance of certain characteristics of care environments, which include: access to the outdoor and indoor nature (plants, natural light and fresh air), design that promotes sensory and social engagement and opportunities for privacy, safety and security. 38 …”

Social networks, social capital and end-of-life care for people with dementia: a realist review

“…Transitions occurred within a person’s home as professionals entered and changed the physical space. They also occurred when a person moved out of the home into an alternate care environment 87–89. The process of physical transition acted as an interface on which supportive networks of care would convene along with the person with dementia and professional care services.…”

“…Transitions: ‘I tend to think that people with dementia do want familiar; it’s the change that is difficult to cope with and the familiar things are personal things, if we’re talking about residential care, to bring in personal things of theirs, whether it was his music, I know my husband did a lot of photography as a hobby… and he had the photographs there… and when he did go into respite, we took the same pictures, I think, that was important to him.’88…”

“The challenge of joining all the pieces together” – Nurses’ experience of palliative care for older people with advanced dementia living in residential aged care units

“…In a study by Zeisel (2013), it emerged that a person-centred design of the care environment resulted in older people with dementia experiencing safety and exhibiting less anxiety, agitation, aggression and apathy. According to Fleming, Kelly, and Stillfried (2015), a home-like environment makes calm and harmony possible. The person-centred design may also create better relationships between the nurse, older patient and his or her relatives (Zeisel, 2013).…”