Background
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Compensate for disability
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Maximise independence
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Enhance self-esteem and confidence
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Demonstrate care for staff
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Be orientating and understandable
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Reinforce personal identity
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Welcome relatives and the local community
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Allow for the control of stimuli.
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Be safe and secure
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Be small
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Be simple and provide good ‘visual access’
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Reduce unwanted stimulation
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Highlight helpful stimuli
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Provide for planned wandering
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Be familiar
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Provide a variety of spaces with opportunities for both privacy and community
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Provide links to the community
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Be domestic and homelike.
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gain a better understanding of the needs and wishes of people with dementia nearing the end of their lives, and those of their families,
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gain a better understanding of the physical resources required by the staff caring for them and
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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.
Methods
Focus groups
Group | Discussion guide |
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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? | |
Practitioners | 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
Analysis
Focus groups
Modified delphi survey
Results
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)
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)
Calm environment
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)
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)
Use of technology
Well, when I get to that stage I would like my husband to be able to check on the webcam. (FG2F1)
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)
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)
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)
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)
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)
I was just thinking of two dementia cases that we have; one who, like you were saying, wandering, wandering, still running around. (FG3F5)
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An environment that supports the continued use of the senses
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Opportunities for social engagement
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Opportunities for spiritual engagement
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Familiarity and homeliness
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Calmness
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The means to control levels of stimulation
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Opportunities for the family to be with the person with dementia
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Privacy
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The maintenance of dignity by, for example, providing all of the facilities required for personal care
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Opportunities for monitoring of residents by care staff
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Technology, particularly communication technology
Views of experts in design, end of life and palliative care for people with dementia
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Support of the continued use of the senses
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Provision of opportunities for engagement with spiritual aspects of life
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Provision of opportunities for social engagement
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Promotion of a sense of familiarity and homeliness
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Promotion of calmness
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Provision of opportunities to be with family
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Provision of privacy
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Fostering of dignity
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Enabling of visual monitoring by staff – via human contact and not through the resident being placed in a public area
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Provision of access to the outdoors/natural environment
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Access to nature (e.g. plants, natural light, fresh air)
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Support of safety and security- this domain requires further consideration and definition
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A focus on legibility (e.g. ability of staff, residents and visitors to find their way around/know where things are)
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Reduce physical stress (e.g. provision of appropriate beds/mattresses)
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Facilitate nursing care (e.g. facilitate bathing, feeding, going to the toilet, moving and handling.)
Discussion
Psychological Needs [8] | WHO definition of palliative care [45] | Aspects of the Addington-Hall approach to palliative care [46] | Environmental needs identified from this study |
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Attachment | Support to person and family | Importance of sensitive communication | Promote of a sense of familiarity and homeliness |
Comfort | Symptom control | 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) | |||
Promote calmness | |||
Support safety and security | |||
Enable visual monitoring by staff – via human contact | |||
Reduce physical stress | |||
Facilitate nursing care | |||
Identity | Integration of psychological, social and spiritual | Whole person approach | Provide opportunities for engagement with spiritual aspects of life |
Provide privacy | |||
Foster dignity | |||
Occupation | Affirmation of life | Respect for autonomy | Provide opportunities for social engagement |
Inclusion | 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 |