- Research article
- Open Access
- Open Peer Review
‘I want to feel at home’: establishing what aspects of environmental design are important to people with dementia nearing the end of life
© Fleming et al.; licensee BioMed Central. 2015
- Received: 14 March 2015
- Accepted: 30 April 2015
- Published: 12 May 2015
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.
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.
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.
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.
- Focus Group
- Palliative Care
- Care Home
- Panel Member
There are growing calls for end of life care to be provided, not just to those with cancer [1, 2] but for people with coronary heart disease, older people  and indeed all people approaching the end of life regardless of age, diagnosis, gender, ethnicity, sexual orientation, religious belief, disability or socio-economic status . In the UK, the Department of Health  also proposes that high quality care at end of life should be available wherever the person may be – at home, in a care home, a hospice, hospital or elsewhere.
The case for making palliative care available for people with dementia has been made on the grounds of equity, need and on the basis that adopting a palliative approach would improve the quality of care available to people with dementia; throughout their journey . In the UK, the philosophy of palliative care emphasizes care and communication over inappropriate intervention and treatment ; it attempts to redirect the emphasis on technology-driven medicine. The European Association for Palliative Care, in their white paper, reached a consensus on eleven domains of optimal palliative care for people with dementia, including ‘for dying people, a comfortable environment is desirable’ , however there is no elaboration on what this might entail. In Australia, guidance on palliative and end of life care emphasizes a person-centered  approach which meets physical, psycho-social and spiritual needs and addresses aspects of the environment such as ensuring bedrooms are of sufficient size to accommodate visitors and equipment, and that sensory support is offered .
The association between advanced age and dementia indicates a rapidly increasing prevalence of people with dementia resident in the care home sector. In Australia during 2006-2007, 72.7 % of people admitted to care homes were 80+ years of age, an increase from 64.1 % in 1998-1999 . Worldwide it is estimated that four fifths of people in care homes have a dementia . The National End of Life Care Intelligence Network report that the largest percentages of deaths of people with dementia occur in hospital (36%), followed by nursing homes (30%) and supported accommodation (26%) . Relatively small percentages die in their own homes, in hospices, or elsewhere.
The increasing numbers of people entering care homes in a frailer state and policy drivers to provide high quality palliative and end of life care to people with dementia [4, 13] have prompted consideration of what a palliative approach for dementia care entails . This paper explores one aspect of care for people with dementia nearing the end of life: what environmental characteristics are important to promote living as well as possible until death .
A ‘dementia friendly’ environment has been described as ‘a cohesive system of support that recognises the experiences of the person with dementia and best provides assistance for the person to remain engaged in everyday life in a meaningful way’ (p.187) . Any definition of a dementia friendly environment should consider both the experiences of the person with dementia within the environment and also the social, physical and organisational environments which impact on these experiences. Lyman (p.15)  states that ‘care providers and care recipients inhabit the unique world of dementia care. If designers and programme planners can understand this world from the perspective of persons living with dementia, an “enabling” environment can minimise disability and provide opportunities to live a meaningful life, despite losses and challenges associated [with dementia].’
Compensate for disability
Enhance self-esteem and confidence
Demonstrate care for staff
Be orientating and understandable
Reinforce personal identity
Welcome relatives and the local community
Allow for the control of stimuli.
Be safe and secure
Be simple and provide good ‘visual access’
Reduce unwanted stimulation
Highlight helpful stimuli
Provide for planned wandering
Provide a variety of spaces with opportunities for both privacy and community
Provide links to the community
Be domestic and homelike.
Such principles allow staff and management to gain an understanding of problems that are caused by the environment in which people with dementia live, allowing for the implementation of short and long-term plans for improving the environment to support care .
The focus of “dementia friendly environments”  has been on maintaining independence and well-being through engagement and is therefore aimed at those who are relatively fit and mobile. Despite the relatively large body of work on identifying optimum design principles for people with dementia [22, 18], with a focus on maintaining independence and balancing sensory stimulation according to needs, there is little literature and even less research into design that focuses on the needs of those with advanced dementia , or those with dementia who are nearing the end of life or dying. With an increasingly frail population of people with dementia receiving care in formal care settings, current design principles might not accurately reflect this population’s needs and wishes; this might particularly be the case for people with dementia approaching the end of their lives. The overall aim of this study was to identify the environmental features that are desirable in buildings used to provide care for people with dementia nearing the end of their lives.
gain a better understanding of the needs and wishes of people with dementia nearing the end of their lives, and those of their families,
gain a better understanding of the physical resources required by the staff caring for them and
identify a set of features that will inform the design of physical environments that accommodate the needs of people with dementia nearing the end of their lives.
The end of the person with dementia’s life was conceptualised as occurring in the severe stage of dementia . This stage is characterised by severe memory loss, disorientation to time and place, inability to function independently outside of the home, very restricted or no interests and requiring total assistance with personal care.
Focus groups are a useful method to identify a range of opinions by discussing a particular issue with a small group of people . Focus groups were used to explore the needs and wishes of those with dementia, their families and those caring for them (practitioners) with respect to design of environments when nearing the end of life. The findings from a literature review  were used to generate a list of topics to guide the focus group discussions (Fig. 1).
Three focus groups (FG) were carried out by two of the research team RF and FK in three cities along the East coast of Australia during 2012. Both RF and FK are experienced researchers who have conducted numerous participant interviews and focus groups [27-31] and have established research backgrounds in environmental design for people living with dementia [19-21, 18, 27, 28].
A convenience sample of participants with dementia and family carers were recruited via the Alzheimer’s Australia Consumer Dementia Research Network. Members of the Dementia Research Network are people with dementia who volunteer to provide comments on research applications and to offer suggestions for areas of research. Practitioners were recruited by invitation via the New South Wales and Australian Capital Territory Dementia Training Study Centre mailing list. FG1 involved four recently bereaved family carers of people with dementia: all female. Three were the wives of recently deceased people with dementia, the fourth was the daughter of a person with dementia in residential aged care. FG2 involved nine participants: seven female and two male. Five were the spouses of deceased people with dementia, two were daughters of deceased people with dementia and two were people with younger onset dementia. FG3 involved five participants, all female. Two were care workers, one a care home manager, one a dementia care educator and one a palliative care nurse researcher. All had experience of caring for people with dementia nearing the end of their lives.
Focus group discussion points
People with dementia Recently bereaved family members
1. What aspects of the design of your house/garden are important to you at the moment?
2. If you have been in hospital or a medical or nursing setting, can you describe aspects of the design of the setting that you liked and/or disliked?
3. What are the key design differences between a hospital and your home? How do they both make you feel?
4. What changes would you like to make to a hospital setting that would make you feel more comfortable if you are in hospital or other medical setting?
5. If you become frail or ill, what are the key things that you would like to have in place to help you feel more comfortable?
6. Expand on why they would make you feel better
7. Expand on aspects of design you think would make you feel worse and why?
1. What are the key areas of importance to you when caring for someone with dementia who is frail and/or nearing the end of life?
2. When someone with dementia is dying, what do you do to care for them?
3. What are your concerns when caring for someone with dementia who is dying?
4. From your experience of caring for someone with dementia who is dying, what aspects of the design of the physical environment help or hinder the care you give?
5. What aspects of the physical environment would you like to improve when you are caring for someone with dementia who is frail and/or nearing the end of life?
6. If someone was restless in bed, what would you do to help make them more comfortable? How could the design of the setting help or hinder you with this?
Survey to identify desirable characteristics
Delphi surveys are an iterative method used to reach consensus of a group of experts on a particular issue  and have been used to assist in defining palliation in dementia care . In order to reach a consensus on the principles of environmental design that might accommodate the needs of people with dementia nearing the end of their lives, a total of 22 professionals in the areas of architecture and interior design for aged care and end-of-life and palliative care, sourced from a convenience sample of the contacts of the investigators, were invited to participate in a Delphi process. Twenty consented and one who declined offered an alternate expert who accepted.
The 21 experts surveyed included 10 experts in environmental design of care facilities for older people, eight experts in palliative and/or end of life care, one expert in advanced dementia care, one expert in hospital intercommunication and one expert in end of life environments. Experts were from research (7) and practice (12) or both (2). Fifteen were based in Australia and six in the UK. The average number of years of experience providing, developing or researching services for people with dementia was 18.3 (ranging from 5 to 30 years) and the average number of years providing, developing or researching services for people with dementia in the final stages was 13.7 years (ranging from 0 to 30 years).
The list of 11 desirable features for the environment which were identified in the focus groups was developed into a series of questions, each asking the professional to rate their perception of the level of importance of that feature to people with dementia nearing the end of life on a 5-point Likert scale. The questionnaire then asked for examples of how this feature might be seen in practice and for any features that may be missing from the list presented. The questionnaire also asked a number of demographic questions and questions about level of experience and area of practice. The survey was administered using the online survey program, SurveyMonkey. The survey ran for five and a half weeks and one personalised reminder was sent during the survey period. Individual survey completions were not able to be determined as the survey was anonymous. At the closing date, 21 participants had contributed to the survey and 18 had completed all questions.
The list of desirable environmental features was refined following analysis of responses to the first survey. It included a list of the nine features with at least 50% strong support and a second list of six features that were derived from panel member comments. The refined list was then circulated to all survey participants who were asked to consider if any of the features should not be included, to provide any comments if they wished and to provide any additional features if they felt any of high importance were missing. Provision of comments was optional and participants were given three weeks to do this. A total of nine participants contributed to the second round of the survey, eight participants completed all questions.
Focus group transcripts were read thoroughly alongside audio files to ensure accuracy of transcription and to gain a feel for what participants were saying. Transcripts were then read carefully several times by one researcher to identify initial codes and themes based on the topic guides and issues arising during the focus groups . They were then reviewed by the other researcher alongside initial codes and themes to ensure accuracy. Discussions were held on emerging ideas and themes that would inform the development or adaptation of existing design principles. All focus group data were managed using qualitative data management software NVivo8. From analysis of the focus groups, a list of 11 environmental features was identified to support the care of people with dementia nearing the end of life.
Modified delphi survey
Expert panel ratings of the importance of each environmental feature were used to refine the initial 11-item list. Features that did not have at least 50% strong support (i.e. 50% or more of participants thought they were very, or extremely, important), where separated out into a second list. Free response examples provided by each participant were organised into items within each main environmental feature. These items exemplified how each feature could be realised in practice. Comments made throughout the survey as well as in response to the question about whether panel members felt any features were missing, were thematically analysed and used to develop a list of additional exemplars and features for the second round of the survey. No additional features were provided in the second round, but comments made by panel members who participated in that round of the survey were incorporated into the exemplars of desirable environmental features to produce the final list.
Views of people with dementia and family carers
Comfort through engagement
Perhaps if they’re not well anymore, right at the end, and comfort is something that can be adjusted, adjustable bed with, you know, ventilation and a window nearby and, you know, music nearby, so that if you sense that’s what’s of comfort to them, would be important. (FG1F4)
We got (husband) out every day that the sun was shining and when it wasn’t freezing cold, he came home mid-winter and we’d put his beanie on and get him into the recliner wheelchair… and out into the grass in the garden… lots of garden, lots of birds. He’s an ornithologist, loved birds, could tell them all by their sound, you know, and we’ve got lots of jasmine, and stuff like that, around so, very early spring, like now, the smell of the jasmine was around and you could see him responding to it. So, in terms of those things, and just feeling the sun, just feeling the warmth of the sun was incredibly important. (FG1F4)
I do think it’s… most people like outdoors, there are very few people who don’t like looking at the leaves fluttering on the trees and being outdoors, I think, there isn’t enough attention and enough space for people to be taken outside, to be able to be taken outside, I think, that’s crucial. (FG1F5)
It depends how you define spirituality, I always say you've got your cognition and then you've got your emotions and then there's the inner you. That could be the herb garden or the music or the pets, or it could be your faith system or all of the above. But I think it does becomes much more important (near the end of life), because if you can’t do all of that remembering and factual things, and you can’t do the talking and the emotional, who everybody is, then you really are your true self, and you can be nurtured as your true self. (FG2F1)
But, even, in residential care, I don’t think that the focus should be keeping a person in their room, even if they’re no longer mobile, they have to get out of that room, I think that’s terribly important . (FG1F5)
But, it was having (his son) sitting next to him, holding his hand, talking about some of the things that were there, just, periodically, feeding him, talking some more, just sitting quietly together, just that sense, gentle light in the room, you know, moderate sounds, just, they were the things in terms of the make up of the environment. (FG1F4)
Something I did with my dad is he used to get up and wander every night and purely by accident one night the cat got stuck in his room, and the next morning, he actually didn’t get up that morning, and the next morning when I went into his room the cat was curled up in bed with him. And so from then on for the last two years, every night, I put the cat in bed with him, and he actually died at home with the cat around him. (FG2F6)
I don’t know, I was just going to say there was a lady here a few weeks back and her family said she was very restless so as soon as they gave her this little (pretend) cat and a basket or a rug or whatever it was, anyway, she just sat there like this and she was… (FG2F8)
And she began to open up and speak. (FG2M2)
I find that where (wife) is, everybody’s different and they have different things. One lady has a doll, a big doll, it’s almost life-like. I thought it was a doll. Others have dogs and octopuses, all kinds of things. But a lady has a little poodle, and she takes it round to the various ones that she knows loves a dog and puts it in the bed with her. And just to see the reaction on people is just wonderful. (FG2M3)
All of these accounts are founded on the conviction that it is possible to provide comfort to people with dementia until they die and that this can be achieved through engaging the person either through whatever senses are possible or appropriate, through spiritual means and through the company of family, friends or other means such as dolls or pets.
Feeling at home/familiar
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. (FG1F5)
Because the last thing I want to happen to me is to be moved. I want to feel at home. (FG2F1)
Where my wife is at present, she has the most wonderful room,, and they told me when I went there to make it like it was her home. So I brought in some of her paintings and photographs, everything that’s all around the wall, TV. And outside she’s got a door that opens out into a little porch which has a table on it and two chairs, and she can look straight out into the car park and see me coming in. (FG2M3)
The overwhelming opinion of carers and people with dementia is that care settings must have a homely feel; this will be achieved through having the person’s own belongings, ornaments, pictures, television etc. in it.
I think the calm and peaceful environment is…for me, walking into an environment where there’s lots of noise and other surroundings going on seems to affect my coping skills and how I would interact. And I feel that certainly that will stay until the end, the quiet peaceful, serene surroundings seems to be the most important thing, it does impact greatly I feel. (FG2F9)
Nobody seems to understand, but it’s visual stuff, visual clutter. When I was visiting last year in a dementia ward, was not only obviously the sound level, the TV and the radio and the staff talking loudly to each other, but it was a smaller area, there were lots of people, lots of tables, people coming in and out and then the occupational therapist had made stuff, which was hanging everywhere and it was just…And then there were loads of those walkers everywhere; it was just visually … really, really stressful. I would just go there for an hour and I’d be exhausted, And I often think no wonder people in nursing homes are just sitting there like that, because I felt like that when I went in, that I wanted just to sit, close my eyes, because it was too much. (FG2F1)
So one of the things that I’d do, we had the candles, not that he could smell anything, but it was that nice soft light, …I’d have the classical music on, which I just left on until he went to sleep at night and, then, I turned it off and it was just all that softness and calm and it’s very hard to be calm when you’re not a calm person but, for eighteen months we managed because you do need that, you need to have no conflict, totally conflict free, totally and utterly. (FG1F2)
In a similar manner to ensuring comfort through engagement, carers were able to recognise when the person with dementia needed peace, stimulation appropriate to their needs and abilities and an environment free of conflict (excessive noise or visual stimuli).
Privacy and dignity
Is it possible to have a small space, a private space for carers that…Many a time I have to go and stand in the back corridors between two houses to cry sometimes because I’m so upset, because I can’t do it where (husband) is. And here I am standing out in a hallway where the laundry comes in. So in an ideal world could there be, as they have in hospitals, a small intimate space for families, or you can go and you can have a cry and then go back and face it again. (FG2F8)
From these accounts, respecting dignity and privacy are important and, crucially, become more important as dementia progresses; having ensuite bathrooms ensures that dignity and privacy are maintained when increasing frailty necessitates more personal care.
Use of technology
Well, when I get to that stage I would like my husband to be able to check on the webcam. (FG2F1)
Technology could also be used to engage with the senses, for example a visual projection onto the ceiling for people who are in reclining chairs or confined to bed was suggested as a useful way to ensure a more interesting experience. Other technology, such as sensor mats or monitoring equipment were also suggested as possible ways of ensuring the person remained safe, particularly in busy settings when staff might not have time to regularly check on people.
Well, I’d be happy to have that for myself rather than fall. And I was happy to have it for my mum because in the last few days she really needed it. (FG2F1)
… coping with that whole process of losing more, losing more capacities, and so on, when their environment is so confounding for them…and (husband) at one point, thought the electronic hoist, in the room, was something that was very fearsome. (FG1F4)
These accounts highlight the ways in which technology can be used to help people with dementia and their families remain connected with each other and to alert professionals of need, yet they also provide a reminder of the sensitivity with which practitioners and families need to approach the use of technology, so that it is understandable and acceptable to the person regardless of cognitive ability.
Views of practitioners
Practice at end of life
The drivers really are a great idea. (FG3F5)
Well, dying is not necessarily particularly comfortable. (FG3F1)
The workload reduces, you’re not doing PRNs every evening. (FG3F5)
(PRN (Pro Re Nata) = ‘as needed’. Usually refers to administration of medications.)
…keep it nice and simple, once they get to palliative with a syringe driver, they usually won’t hit out, they don’t kick, they don’t walk, they won’t bite, they don’t scratch....they are so peaceful and calm and they just lie there, they’re basically asleep the entire time… so it really doesn’t…the environment around them doesn’t matter… (FG3F1)
These accounts indicate that practitioners’ understandings of the needs and experiences of people with dementia nearing the end of life appear to be influenced by their practice and the impact of their practice on them, rather than on an understanding of their needs and wishes as individuals. If, as is suggested, syringe drivers containing morphine are used, this will inevitably influence practitioners’ views of the experiences of people with dementia as they near the end of life; thus influencing their views on the necessity or otherwise of ensuring the design of the environment meets their engagement, spiritual and social needs.
Design to improve working lives
I mean I will say, the layout of our dementia floor is ridiculous. Absolutely ridiculous. It just needs to be erased or rebuild a new one. It’s just…as a care staff, it’s a nightmare. An absolute nightmare. (FG3F1)
Buildings with long corridors and ‘nooks and crannies’ were deemed unsafe as these encouraged patients ‘wandering’. An ideal design put forward by one participant would be a circle so that people would not arrive at a dead end. Some recounted creative ways to disguise dead ends, such as a mural or other feature to hide an area that was off limits to the person with dementia. Wide corridors and wide doorways were seen as vital for easy access for those with wheelchairs, and electronic beds that would raise and lower were also reported as useful.
Palliative care suites are beautiful, I don’t know if you’ve had anything to do with them? They’re absolutely delightful. And more often than not, they have more than one room; there’s like a bedroom and an associated room, so you have space for both the family and the person. (FG3F3)
Some practitioners also spoke of the preparations they would make when they know the person was dying – they would take out the ‘dying box’ which contained candles, incense, a vase and objects to create a ‘calming atmosphere’.
From these accounts, the design of the building has relevance for practitioners if it can make their working lives easier – if it can allow for easier monitoring of patients, prevent them ‘wandering’ and ensure their safety. While there was some thought into creating a nice, calm atmosphere for the person at the end of life, this was not central to their views about the design of a care setting, possibly because their practice experience is one of caring for people who are sedated and therefore unable to engage with their environment.
Systems and institutional influences
You don’t have the resources to… And if you could take two off to look after the one that was dying… (FG3F2)
Another key area of concern was the funding of aged care and the difficulty of securing enough resources (in a timely manner) to cope with patients’ changing needs. This seemed to require knowledge of the system and strategies to ‘play’ it. Practitioners described a constant battle to secure resources and if they didn’t manage to secure them they would have to do without extra resources (usually more staff) and this inevitably has an impact on the quality of care.
I was just thinking of two dementia cases that we have; one who, like you were saying, wandering, wandering, still running around. (FG3F5)
Practitioners’ accounts of the constraints of the systems they had to work in illustrate the difficulties of thinking beyond the day to day practicalities of carrying out care. This might explain the difficulty they had thinking about design in relation to the experiences of people with dementia who are nearing the end of life.
An environment that supports the continued use of the senses
Opportunities for social engagement
Opportunities for spiritual engagement
Familiarity and homeliness
The means to control levels of stimulation
Opportunities for the family to be with the person with dementia
The maintenance of dignity by, for example, providing all of the facilities required for personal care
Opportunities for monitoring of residents by care staff
Technology, particularly communication technology
Views of experts in design, end of life and palliative care for people with dementia
Support of the continued use of the senses
Provision of opportunities for engagement with spiritual aspects of life
Provision of opportunities for social engagement
Promotion of a sense of familiarity and homeliness
Promotion of calmness
Provision of opportunities to be with family
Provision of privacy
Fostering of dignity
Enabling of visual monitoring by staff – via human contact and not through the resident being placed in a public area
Underpinning all of these was the importance for the design of the physical environment to support a personalised approach and a sense of homeliness/domesticity.
Provision of access to the outdoors/natural environment
Access to nature (e.g. plants, natural light, fresh air)
Support of safety and security- this domain requires further consideration and definition
A focus on legibility (e.g. ability of staff, residents and visitors to find their way around/know where things are)
Reduce physical stress (e.g. provision of appropriate beds/mattresses)
Facilitate nursing care (e.g. facilitate bathing, feeding, going to the toilet, moving and handling.)
Survey participants were invited to comment on the revised list of nine strongly supported characteristics and six additional characteristics. There was unanimous agreement on the inclusion of both the strongly supported and the additional characteristics from the eight panel members who responded to this question.
It was clear from the analysis that participants with dementia and family carers differed from practitioners in terms of what might be important design principles in the care of people with dementia nearing the end of life and in ensuring an optimum experience for the person nearing the end of life. People with dementia and family carers placed a strong emphasis on provision of comfort through engaging with the senses, through remaining socially connected (whether through family, friends, pets or soft toys) and through spiritual engagement. These ideas assume some degree of awareness or ability to engage and family carers worked hard to ensure they engaged with the person appropriately and in a way that comforted them. Practitioners seemed to have a different way of offering comfort – to administer morphine through a syringe driver and this had the effect of sedating the person so that they were no longer aware of their surroundings. The implication of this is that there is no need to work to engage spiritually, socially or through the senses and therefore no need to consider how aspects of design might improve their experience. This seems to indicate a complete, and in the authors’ opinion unjustified, disjunction between best practice evidence based care for people at an earlier stage of dementia, which highlights the beneficial effects of a range of non-pharmacological interventions including person centred care, communication skills training , music therapy  and sensory (vision, hearing, smell, touch and taste) intervention [36-38], and care when nearing the end of life.
Participants with dementia and carers were clear they wanted to be, and remain in, a familiar environment, with their own belongings and familiar things. Practitioners, however, liked the idea of a dying room to which they could move a person who is dying and in which they could create an atmosphere of calm. Practitioners also liked the idea of a dying box from which they could select items to create a calming, homely space. There is support for the beneficial effects of providing a calm environment in the literature on the Namaste approach to the care of people with advanced dementia. Involvement in Namaste Care has been shown to improve interest in the environment and for residents who are withdrawn or have reduced social interaction; participating in the program decreased some indicators of delirium, and decreased the need for administration of anti-anxiety medications . While this research focussed on people with advanced dementia they were not at the stage where transfer to a dying room would be considered. However it is not unreasonable to extrapolate the benefits of a calm environment, without necessarily a transfer to a dying room, to this group.
Participants with dementia and family carers were clear they wanted care and an environment that ensured dignity and privacy. Most of them were also clear of the need to ensure this increases with increasing cognitive impairment and this particularly related to having easy access to ensuite bathrooms. Practitioners were concerned about the balance between privacy and safety – possibly a reflection of a focus on design to enable fulfilment of duty of care as opposed to facilitating a “good end”. All participants recognised the need for family members to have access to a quiet, private space to rest in and take time out in.
The views of the practitioners are of particular concern as they differ so much from what we would like to think is normal, good practice. However they may be a stark reminder of reality. They recognised their practice was constrained by organisational and institutional factors, such as funding arrangements for delivering care, resource and staffing levels and inadequate design of care settings. They also appeared to be unconsciously constrained by unquestioned practices, such as instituting a syringe driver on recognition that someone is dying and the practice of labelling patients according to their needs or levels of impairment. These seemed to influence their perceptions on the importance or otherwise of aspects of the environment for people with dementia nearing the end of life. A study of 61 care managers’ perceptions and practices toward end of life care in a sample of UK care homes found a range of interpretations of “end of life”, with a focus on the actual event of death . A recent review of the literature found multiple studies observing higher usage of restraint, sedation and tube feeding among people the final stages of dementia than in other terminal illnesses or those who were dying without dementia . This research and the responses provided in this study, suggest that there is little awareness of the benefits of a relationship-based care model with its focus on leadership, teamwork, professional nursing practice, patient care delivery system, resource driven practice and outcome measurement with the patient and family at the centre of all activities . There is a need for increased research, education and approaches to end of life care for those providing care to people living in residential care, especially those with dementia nearing the end of their lives .
Support the continued use of the senses
Provide access to the outdoors/natural environment
Provide access to nature indoors (e.g. plants, natural light, fresh air)
Provide opportunities for engagement with spiritual aspects of life
Provide opportunities for social engagement
Promote a sense of familiarity and homeliness
Provide opportunities to be with family
Support safety and security
Support staff, residents and visitors to find their way around/know where things are
Enable visual monitoring by staff – via human contact and not through the person being placed in a public area
Reduce physical stress (e.g. provision of appropriate beds/mattresses, managing odours and temperature)
Facilitate nursing care (e.g. facilitate bathing, feeding, going to the toilet, moving and handling, assist positioning and reposturing).
Psychological needs, palliative care and environmental requirements
Psychological Needs 
WHO definition of palliative care 
Aspects of the Addington-Hall approach to palliative care 
Environmental needs identified from this study
Support to person and family
Importance of sensitive communication
Promote of a sense of familiarity and homeliness
Quality of life
Support of the continued use of the senses
Provide access to the outdoors/natural environment
Provide access to nature indoors (e.g. plants, natural light, fresh air)
Support safety and security
Enable visual monitoring by staff – via human contact
Reduce physical stress
Facilitate nursing care
Integration of psychological, social and spiritual
Whole person approach
Provide opportunities for engagement with spiritual aspects of life
Affirmation of life
Respect for autonomy
Provide opportunities for social engagement
Support to person and family
Care of the person and family
Provide opportunities to be with family
Support staff, residents and visitors to find their way around
It is recognised that the views expressed in the focus groups may not be generalizable to the wider population of people with dementia, their family or professional carers as the sample is small and no steps were taken to attempt to make it representative. The views of people with dementia are represented by the views of two very articulate people with dementia. We have no way of knowing that these views accurately reflect those of people with dementia nearing the end of their lives. They are simply the closest approximation that we were able to access.
This study identified a set of environmental features that are desirable in buildings used to provide care for people with dementia who are nearing the end of their lives. These features are compatible with the principles currently used in the design of environments for mobile people with dementia and fit well with the psychosocial needs of people with dementia and current approaches to palliative and end of life care. They are offered as a supplement to these principles to ensure the needs and wishes of people with dementia who are less mobile and who are dying are included in future design considerations. This will go some way towards provision of equitable services advocated in policy . We suggest that considering these characteristics as part of a continuum of care will support good practice and offer those with dementia and their families a more positive experience in the last days of their lives together.
Thank you to everyone who helped organise the focus groups and made us welcome. Thank you to the practitioners who give their time to talk to us about their practice experience and thank you to people with dementia and family carers for sharing their experiences and hopes for the future. Thank you to the panel of experts whose input has contributed to the development of these design principles.
- National Health Service England and Wales. National cancer plan. London: Department of Health; 2000.Google Scholar
- Executive S. National care standards: Hospice care. Edinburgh: Scottish Executive; 2001.Google Scholar
- Department of Health. National service framework for older people. London: Department of Health; 2001.Google Scholar
- Department of Health. End of life care strategy: promoting high quality care for all adults at the end of life. London: Department of Health; 2008.Google Scholar
- Small N, Froggatt K, Downs M. Living and dying with dementia: dialogues about palliative care. 1st ed. Oxford: Oxford University Press; 2007.View ArticleGoogle Scholar
- ten Have H. Expanding the scope of palliative care. In: Purtilo RB, ten Have H, editors. Ethical foundations of palliative care for Alzheimer disease. Baltimore: The Johns Hopkins Univerity Press; 2004. p. 61–79.Google Scholar
- van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Med. 2014;28(3):197–209.View ArticleGoogle Scholar
- Kitwood T. Dementia reconsidered: The person comes first. 1st ed. Buckingham: Open University Press; 1997.Google Scholar
- Department of Health. Death and dying: Good practice for quality dementia care. London: Department of Health; 2010.Google Scholar
- Australian Institute of Health and Welfare. Australia’s Welfare 2009. no. 9. Cat. no. AUS 117. Canberra: Australian Institute of Health and Welfare; 2009.Google Scholar
- Prince M, Prina M, Guerchet M. World Alzheimer Report: Journey of caring – An analysis of long-term care for dementia. London: Alzheimer’s Disease International (ADI); 2013.Google Scholar
- National End of Life Care Intelligence Network. Deaths from Alzheimer’s disease, dementia and senility in England. Bristol: South West Public Health Observatory; 2010.Google Scholar
- Government S. Living and dying well: A national action plan for palliative and end of life care. Edinburgh: The Scottish Government; 2008.Google Scholar
- Gwande A. Being mortal: Illness, medicine and what matters in the end. 1st ed. London: Profile Books Ltd; 2014.Google Scholar
- Davis S, Byers S, Nay R, Koch S. Guiding design of dementia friendly environments in residential care settings: Considering the living experiences. Dementia. 2009;8(2):185–203.View ArticleGoogle Scholar
- Lyman K. Making design dementia friendly: The user perspective. In: Stewart S, Page A, editors. Just Another Disability: Making Design Dementia Friendly. Glasgow: Glasgow School of Art; 1999. p. 15–8.Google Scholar
- Marshall M. Therapeutic buildings for people with dementia. In: Judd S, Marshall M, Phippen P, editors. Design for dementia. London: Hawker Publications; 1998. p. 11–4.Google Scholar
- Fleming R, Purandare N. Long-term care for people with dementia: environmental design guidelines. Int Psychogeriatr. 2010;22(7):1084–96.View ArticlePubMedGoogle Scholar
- Fleming R, Bowles J, Mellor S. Peppertree Lodge: Some observations on the first fifteen months of the first C.A.D.E. unit. Aust J Ageing. 1989;8(4):29–32.View ArticleGoogle Scholar
- Fleming R, Bowles J. Units for the confused and disturbed elderly: Development, Design, Programmimg and Evaluation. Aust J Ageing. 1987;6(4):25–8.View ArticleGoogle Scholar
- Fleming R, Forbes I, Bennett K. Adapting the ward for people with dementia. Sydney: NSW Department of Health; 2003.Google Scholar
- Day K, Carreon D, Stump C. The therapeutic design of environments for people with dementia: a review of the empirical research. Gerontologist. 2000;40(4):397–416.View ArticlePubMedGoogle Scholar
- Martin G, Sgrillo J, Horton A. Creating the optimal milieu for care. In: Martin A, Sabbagh M, editors. Palliative care for advanced Alzheimer’s and dementia: guidelines and standards for evidence-based care. 1st ed. London: Springer Publishing Company; 2011. p. 55–64.Google Scholar
- Morris JC. Clinical dementia rating: a reliable and valid diagnostic and staging measure for dementia of the Alzheimer type. Int Psychogeriatr. 1997;9(Suppl 1(1)):173–6.View ArticlePubMedGoogle Scholar
- Liamputtong P, Ezzy D. Qualitative research methods. 2nd ed. Melbourne, Victoria: Oxford University Press; 2005.Google Scholar
- Fleming R, Kelly F, Stillfried G. Defining the desirable characteristics of physical environments for the delivery of support and care to people in the late stage of dementia. Sydney: Dementia Collaborative Research Centre, University of New South Wales; in press.Google Scholar
- Kelly F, Innes A, Dincarsian O. Improving care home design for people with dementia. J Care Serv Manage. 2011;5(3):147–55.View ArticleGoogle Scholar
- Kelly F, Innes A, Dincarsian O. Care home design for people with dementia: what do people with dementia and their family carers value? Aging Ment Health. 2011;15(5):548–56.View ArticlePubMedGoogle Scholar
- Killett A, Burns D, Kelly F, Brooker D, Bowes A, LaFontaine J et al. Digging deep: How organisational culture affects care home residents’ experiences. Ageing Soc, Available on CJO. 2014. doi:10.1017/S0144686X14001111.Google Scholar
- Walters M, Kelly F, Kilgour J. Designing a spoken dialogue interface to an intelligent cognitive assistant for people with dementia. Health Informatics J. in press.Google Scholar
- Kelly F, Innes A. Facilitating independence: The benefits of a post-diagnostic support project for people with dementia. Dementia. 2014. doi:10.1177/1471301214520780.PubMedGoogle Scholar
- Hasson F, Keeney S, McKenna H. Research guidelines for the Delphi survey technique. J Adv Nurs. 2000;32(4):1008–15.PubMedGoogle Scholar
- Fielding N, Thomas H. Qualitative interviewing. In: Gilbert N, editor. Researching Social Life. 2nd ed. London: Saga; 2002. p. 123–44.Google Scholar
- Bourgeois M, Dijkstra K, Burgio LD, Allen R. Communication skills training for nursing aides of residents with dementia: The impact of measuring performance. Clin Gerontol. 2004;27(1-2):119–38.View ArticleGoogle Scholar
- Svansdottir H, Snaedal J. Music therapy in moderate and severe dementia of Alzheimer’s type: a case–control study. Int Psychogeriatr. 2006;18(04):613–21.View ArticlePubMedGoogle Scholar
- Livingston G, Kelly L, Lewis-Holmes E, Baio G, Morris S, Patel N, et al. Non-pharmacological interventions for agitation in dementia: systematic review of randomised controlled trials. Brit J Psychiat. 2014;205(6):436–42.View ArticlePubMedGoogle Scholar
- Behrman S, Chouliaras L, Ebmeier KP. Considering the senses in the diagnosis and management of dementia. Maturitas. 2014;77(4):305–10.View ArticlePubMedGoogle Scholar
- Kong E-H, Evans LK, Guevara JP. Nonpharmacological intervention for agitation in dementia: a systematic review and meta-analysis. Aging Ment Health. 2009;13(4):512–20.View ArticlePubMedGoogle Scholar
- Simard J, Volicer L. Effects of Namaste Care on residents who do not benefit from usual activities. Am J Alzheimers Dis Other Demen. 2010;25(1):46–50.View ArticlePubMedGoogle Scholar
- Froggatt K, Payne S. A survey of end-of-life care in care homes: issues of definition and practice. Health Soc Care Comm. 2006;14(4):341–8.View ArticleGoogle Scholar
- Koloroutis M, Trout M. See Me as a Person: Creating therapeutic relationships with patients and their families. Minneapolis, MN: Creative Health Care Management; 2012.Google Scholar
- Chang E, Hancock K, Harrison K, Daly J, Johnson A, Easterbrook S, et al. Palliative care for end-stage dementia: A discussion of the implications for education of health care professionals. Nurs Educ Today. 2005;25(4):326–32.View ArticleGoogle Scholar
- Godwin B, Waters H. ‘In solitary confinement’: Planning end-of-life well-being with people with advanced dementia, their family and professional carers. Mortality. 2009;14(3):265–85.View ArticleGoogle Scholar
- Hughes JC. Palliative care in severe dementia. London: Quay Books; 2006.Google Scholar
- World Health Organisation. Cancer pain relief and palliative care: Report of a WHO expert committee. Geneva: WHO; 1990.Google Scholar
- Addington-Hall J. Reaching Out: Specialist palliative care for adults with non-malignant disease. London: National Council for Hospice and Specialist Palliative Care Services; 1998.Google Scholar
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