Table 5 Results
From: The experience of lived space in persons with dementia: a systematic meta-synthesis
Categories | Sub-categories | |
|---|---|---|
Home as lived space | Long-term care as lived space | |
Belonging | - “the end of an era”, the loss of one’s cherished home, and the people, activities, objects and experiences associated with living at home [36] - Home as a locus of familiarity and constancy [37] - Home as a site for the expression of personal interests, values, achievements and status [37] - Home as a repository of memories of Life History [37] Wish to stay in the familiar housing situation as long as possible [91] The participants stated they had strong ties to their home [49] - The sense of “being here” (at home) was shaped over time and mad them feel strong sense of connectedness [49] A participant with dementia was clear about her wishes for the end of life: “The last thing I want to happen is to be moved. I want to feel at home.” [34] - Staying in one’s home was considered extremely important [95] To stay home was essential in order to continue experiencing a good life [107] -The person seems to be familiar with home and recognize belongings [46] - Some described their attachments to their homes mostly in the context of their interactional past and current family and social relationships [37] - Interaction with familiar people outdoors was a source of identity and social inclusion for participants [54] - The fear of unfamiliarity reduced the outside area in which the person with dementia was active [54] - Walk outside every day with our dog, even though the environment is not so familiar as before, walk in the woods find still back home [105] - Continuing life as usual with being a part of the community was seen as important for being connected to the world [105] -Outside home appears becoming unfamiliar and uncertain. Results in person with dementia being reluctant to leave home alone [46] - Participants had feelings of vulnerability and feared being exposed in public [55] -A vivid life past contribution to the society [42] -Citizenship [97] - Participants expressed that their cognitive impairments were seen as hindrances for all kinds of social activities outside their home - The importance of social location [97] -Not going out (of reason not mentioned) [102] -Cannot go out on her/his own, like go shopping, meet friends at a café [102] -Still want to go to library, and do it, even if the person with dementia has problem to act there, I might be embarrassed, but felt it stupid not to go [105] -Slipping away from the world – lived space reduces [50] -She continues to do those things she has always enjoyed- keeping the house clean, visiting with friends, taking trips, going for walks, and attending concerts. As a result, her life has changed little and she continues to feel herself as independent and responsible woman- such activities are constitutive of her personhood [51] -Outside home appears becoming unfamiliar and uncertain, results in person with dementia being reluctant to leave home alone [46] -Feelings of being left alone in the world, and to not being a participant in the world [46] - Major barriers to getting involved in activities included limited activity choices; impairment in physical functioning; and lack of accommodation in the schedule, resources and transportation [39] | - Signalled the overall “winding down” of their lives [36] The younger participant living in residential care felt out of place when receiving care in older settings [90] Relocation was symbolized as: - Familiarity with both place and activity was important to be able to perform activities independently [55] Participants expressed they were disoriented by the move [93] - Patients expressed they were disturbed by the sounds that they could hear but not clearly identify [93] - Being in an unfamiliar space with strange people caused some of them to feel anxious [93] - Being in an unfamiliar place was associated with feelings of stressfulness and confusion [54] - “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.” [34] -Homesickness for the home [66] - This is not a home [66] - In order to protect and enforce the dignity of persons with dementia living in nursing home, they should be confirmed as whole and as individual persons, and should try to make nursing home less institutional and more home like [66] -They describe feeling of homesickness. Not being able to see the institution as a home. “A home is a place where you can walk around and do what you like. Where you don’t have to be afraid of what others think about what you are doing.” [66] - Living among strangers in the nursing home, increases the feeling of homesickness [66] - Homesickness for the home [66] - Want belonging [66] Mirror’s the way we are [63] - Same setting –lived space [63] - Helping to maintain their existing identity [102] - Disillusioned by the care environment, the noise and busyness and the lack of opportunity to engage in activities [43] - Forgetting places [103] - They have reflective thinking about the ward environment, and rules/ restrictions [67] - Familiarly surroundings supported and encouraged occupations, was the key to activity [104] - She will still be able to sense, feel and appreciate the place where she is [51] Maintain a sense of self, remain the same by doing and going the places that he has been used to [106] You get to start a new life (in the care home) [38] -I miss my old home. We are miles apart (the husband and wife living in the care unit, but different rooms) [38] -I want to go back to my own home, to be with people I know [38] -Settle in the new homes (long term care homes) seemed to be a result of pre-visit before moving, continued contact with family, being accepted by others, company, care and assistance from staff [38] -I can go to my room when I like, …..I prefer to stay in the living room with the others [40] -I prepare to have my private living and my privacy. I would like to have my own house [40] -I think it is this country, I wouldn’t like to live anywhere else, (So I suppose I find hope in my country and family) [52] -As long as you are not home, it cannot be better than this [41] -Living in the nursing home as a temporary solution [41] - It is…you know how it is, in a nursing home [41] - Make it homely to feel less lonely [41] - They [the other residents] just sleep… just sit there and cry and sleep and cry… [41] |
Meaningfulness | - Home as a place of retreat, solitude and rejuvenation [37] - Home as a site for the expression of functional competence and engagement in meaningful activities of daily living [37] - Home as a centre of socialization, connectedness and affiliation [37] - Participation in day care program implied a chance to experience a more meaningful social life [90] - Getting upset by misplacing things. Wanting the house to be neat, clean and well-organized [100] - Being ashamed of lost competence and blamed themselves for the practical consequences of their conditions like misplacing household items and not being able to locate them when others needed them [100] -Notes and reminding messages from spouse and family keeps me busy, I have something to do – in the community, outside home, in church [50] - I like retirement. I like being at home, ….. mostly we do things together (mutual decision making) (phase 1) [108] -Over time the person with dementia (and carer) described their lives as having shrunk – they were doing less (restrictive decision-making (phase 3)) [108] -Living space important for the way in which their apartment enable to attend to socio-emotional preoccupations (visitors, discussions, possessions, view, independence) [97] -Expected them self to be able to use the technology they had at home [45] -Home gave them also frustration and anger at the experience of being idled [107] -They sat and waited for something (at home?), but they did not know what they were waiting for [107] -I like retirement. I like being at home, ….. mostly we do things together (mutual decision making) (phase 1) [108] -Daily life as described in the conversations appeared to be uneventful where the person with dementia did not seem to take the initiative to do anything at home other than sit and look out of the window, browse through newspapers and magazines, watch TV or go to bed [46] -I sit here (at home) like a crow in her nest [64] - Participants reported their use of public space was constantly changing. Meaning the public space that participants found comfortable had gradually become smaller [55] - Participants expressed the value of being able to perform activities and visit different places as it created a sense of being an active and independent person who is part of society [55] - The main reason to perform activities in public spaces was that they found it important to be able to do as much as they could, because they knew that AD is progressive and that their ability to perform activities in the future would change [55] - Living close to services such as stores or churches was expressed as important [49] - Patients expressed that being able to see the “outside world” was important [94] - Going out was seen by some as an opportunity for enjoyable informal encounters with friends and neighbors [54] - Getting out of the house was important to prevent loneliness [47] -Disappointed of not being supported in doing activities like outdoor walking [42] -Instrumental preoccupation among the more marginalized participants can be seen in daily-life activities such as cooking and walking [97] -Progress in the disease became hindrances in performing of activities giving life space, had to stop driving and walking alone -The change seemed to be accepted [104] -The person is managing dementia by keeping active in the world. But may have a need to overcome feelings of shame sometimes [105] -Coping strategy: Handling orientation problems by walking to the bakery nearby home in the morning to buy the smallest item in order to get a receipt with the date on [45] -People with mild to moderate dementia did not disappear or retreat from activities outside home or at home, with help from their families they found ways to stay involved both in everyday activities inside the home and out in the community [50] -No I do not go out on my own any longer. My wife does all the shopping [64] -To get out of the house, … getting about, … = keeping busy experiences important [52] - Their interest had changed from the ones they had in the past, this influenced the activities they engaged in in the public space [55] - The main reason to perform activities in public spaces was that they found it important to be able to do as much as they could, because they knew that AD is progressive and that their ability to perform activities in the future would change [55] - Being able to go out and do ordinary daily activities was expressed as being extremely important [49] - Being able to go out was significant in the lives of the participants [54] - Functional reasons for enjoying a walk outdoors included exercise and the benefits of breathing fresh air [54] - Walking outside ensured emotional well-being. Some also mentioned a sense of relief, escape and freedom [54] -Taking walks in the familiar environment helped them maintain sense of coherence to stay active and maintain the current status [104] -Walk outside every day with our dog, even though the environment is not so familiar as before, walk in the woods find still back home [105] -He had stopped running marathon, play the piano in church, doing work around the house [50] -As long as I can get about, and I’ve got my health (I have hope in life) [52] | - Participants indicated that coming to day care resulted in a state of contentment and increased energy [90] - One resident: Being thankful if he could rest in bed all day [26] -White British more positive about caring homes, frequently identifying value in enabling PWD to avoid depending on loved ones in the later stages of the illness [99] - Participants primarily depended on activities provided by the nursing homes [39] - Walking inside and outside of the facility on a daily basis was an important individual activity to residents [39] - Residents played bingo to meet other people and expand social opportunities [39] -I want to go back to my own home, to be with people I know [38] -I always do the washing here, I always did this at home as well….. (giving a feeling of home?) [40] -I can go to my room when I like, …..I prefer to stay in the living room with the others [40] - Participants expressed a lack of activity and that they felt bored in the residential care home [92] - Patients expressed that the care they received was more important than the surroundings [94] - Residents with dementia found that most of the activities offered by nursing homes did not interest them. Activities were limited or did not align with their hobbies or interests [39] -Participants primarily depended on activities provided by the nursing homes [39] -Walking inside and outside of the facility on a daily basis was an important individual activity to residents [39] - If you can’t be home, you must be happy you are on your feet and can have your own room [41] - It is quiet like the grave here [41] - I have no interest in anything here [41] |
Safety and security | Carry on as normal [91] By not “making mistakes” the participants were able to continue to remain at home [49] - Threats of security contrasted with a feeling of peace and comfort [49] - Participants locked their doors to secure them from the outside world [49] - The temporal meaning of “as long as I can” was limited in duration and the women acknowledged that their need to move away from their home would come at a certain time [48] - Factors that they anticipated would contribute to the endpoints of living alone were: Being trouble for family, being worse or being exhausted [48] Participants expressed their need to retreat to a place of safety, usually their home. Staying close to home made them feel safer [47] Being in the rhythm of life [97] -Worrying about others reporting that they have difficulties living on their own could force them to move out of their apartment [97] -Marginalized people did not see dementia as particular problematic. They are occupied with psychological and safety needs [97] Being able to work at home in their own pace to avoid stress and facilitate coping [98] -Preparing and using systems to facilitate everyday coping [98] Getting upset by misplacing things. Wanting the house to be neat, clean and well-organized [100] -Felling confident and secure but also isolated [100] The home created a dilemma, it was the setting of frustration but also for haven [102] - Tried to keep up with social traditions / activities like eating lunch out at Sundays [102] -Life became more home-centred [105] Everyday articles lose meaning. Their home and everyday articles does not serve as a remainder for attention to spur action anymore [46] -Home seems to constitute security [46] -I cannot manage at home any more…, it can get quite difficult sometimes [38] Experiencing getting lost, but being safely returned home. Still feeling safe and still doing activities like outdoor wandering [100] -Feeling fine and secure in going around and doing activities in the surrounding community even though they had experienced events where their ability to manage had been compromised [100] Being disorientated, misunderstanding, and forgetting. But not afraid of doing activities like visiting the graveyard, taking the train or taking a walk alone in the community [100] -Activities performed independently out of the house was not feasible [102] Would rather cuddle up safe at home, than going outside, going outside is becoming difficult [105] Maintain a sense of self, remain the same by doing and going the places that he has been used to [106] - Participants experience of public spaces was also influenced by what kind of preparation activities that were necessary [55] - Participants regarded public space to be less accessible at certain times of the day, planning what time to perform an activity was therefore important [55] | -Residential care was associated by most participants with a place of hospitality and rest where one is served meals and let “someone else do it” [36] - Expressed carers focus upon risk and danger conflicted with their need to be independent [90] - Feelings of safety and comfort were associated with familiar areas [54] It seemed important to participants with dementia that they did not wanted to be in a noisy or overcrowded environment, the important things were calm, peace and quiet [34] There was an expressed ambivalence about living in the care home. - on one hand the care home was the preferred place of care. However, the relationship to the members of staff was important for their total experiences. If the relationship were negative, then the negative impact of living in a care home was more keenly felt [96] Safe and nostalgic comfort [65] -Cleanness and feeling secure. The old style setting provided a sense of security as they grew up in a place like this. The old style made it easy to new clients to acclimate to the environment [65] Enjoy to not have responsibility of housework and food preparations in these environments [43] It is expected that the care homes provide them with company, make them safe, relief them for day-to-day housework and care for them [38] -that you are not strong enough to live at a farm…and do everything that needs to be done [41] - Yes, I would rather be at home, but I probably couldn’t. I am so old (crying) that I couldn’t do anything anymore [41] |
Autonomy | - Home as a locus of autonomy, Control, choice and freedom of action [37] -Valuing travelling, car and having fun. The loss of previous valued activities as ability to drive [42] - The importance of being able to take care of oneself [97] -Expected them self to be able to use the technology they had at home [45] - Increasingly difficulties noticing and using signs and maps limited their access to places in public space that were not familiar [55] - Participants felt that replacement of service personnel with everyday technology influenced their accessibility [55] - Participants access to medical care was limited because it required communication with answering machine on the telephone [55] - Difficulties in finding one’s way in the public space were seen as a serious obstacle by the informants, subtle changes in landmarks in the public space influenced their perceived accessibility [55] -Staff taking a person out of the ward to smoke, express gratitude [67] -Walking outside ensured emotional well-being. Some also mentioned a sense of relief, escape and freedom [54] Others concerns about them getting lost while driving or walking [97] -Loss of employment and the ability to get different places [101] -Cannot go out on her/his own, like go shopping, meet friends at a café [102] -Being able to go out on one’s own when desired gave a feeing o freedom, experienced pleasure, partly giving autonomy [104] -Bike cycling in the town had stopped due to traffic, but short tours on the bike around the summerhouse was appreciated and gave freedom [104] -Driving the car, gave a feeling of freedom and wellbeing [104] -Loss of driving license increased dependency, cannot freely change space [107] | - Meant a shift from living an active and independent life in one’s private residence to cohabitation with other older people in a more structured, protected, supportive and collective living environment [36] - The participants expressed living with dementia in residential care was difficult, a situation over which they had little control, had feelings of loss and uncertainty and felt they were isolated from their family and expressed they were lonely [92] - Participants did not look forward to moving away and being there (in the nursing home) [49] - Going to a residential home was seen as “giving-up” and associated with the loss of freedom the participants had whilst living independently [47] - Participants feared going to residential care [44] - Participants highlighted they wanted to be involved with shaping their service, work together with their provider, share information and having their needs appreciated [44] -Feeling restricted by the environment at a care home. Bing monotonous, with little to do and poor quality interactions [26] -The residents feel that their freedom is restricted: It like being in a prison without bars (the doors are locked e.g. The door to the kitchen, the worker’s office etc.). Cannot just go and get a glass of milk in the kitchen [66] -Like being in a prison [66] -Want freedom [66] -The experience of lack of privacy e.g. Own seat [65] -The experience of hospital-like environment created anxiety and discomfort like: I am not sick; why do I have to stay here [65] -Previous enjoyment with partaking in outside activities, such as walking. Now: Activities were restricted, controlled by staff, not allowed outside the care facilities => kept away from new life experiences, natural beauty and growth [43] -The ward system –that environment interact with the personhood [67] -They have to respond (live) within the restrictions of the ward, a kind of trapped in the situation [67] -Lack of individual choice [67] -If I just could be trusted to go out and smoke [67] -Staff taking a person out of the ward to smoke, express gratitude [67] -They have reflective thinking about the ward environment, and rules/ restrictions [67] -Person with dementia, she does not want to be put away or placed at a nursing home if she cannot take care of herself [50] -I could go out whenever I wanted at home (previous home), but now don’t do much, have to wait for my son to take me out [38] -I would like to not go (to the long term care home) …. You cannot do what you want…. You have somebody over you…… [38] -Restrictions in relation to outdoor walking. Dependent on others to go out [66] -Lack of control over their environment [43] - if you come to a place, you must put some [effort] into it, [and put some things] behind you. I live here, I will be content here [41] |