Participants
Data saturation was reached after we had included 12 PWD, 10 (83%) women and two (17%) men, ages 71–95 years, residing in three different NHs. Six lived in special care units (SCU) for persons with dementia, and six lived in regular units (RU). In the SCU only persons with dementia reside. Most persons with dementia in SCU have some kind of challenging behavior. In the RU people who no longer can live at home due to any kind of disease, including dementia with no serious behavioral problems reside. In Norway the staffing is slightly higher in the SCU compared to RU, with a staff ration of 0.3 staff per patient in RU, and 0.35 in SCU [
32].
The men lived in the same NH but in separate units. Characteristics of the residents can be seen in Table
1. One person died before the follow-up interview; one did not want to be interviewed the first time but consented the second time; one did not want to be interviewed the second time; and one person became severely ill and could not participate in the second interview, for a total of 20 interviews.
The primary nurse is usually an vocational nurse or in some cases a registered nurse, who has got special responsibility to take care of the person with dementia, being in touch with the family, making sure the room is tidy, that the person with dementia has everything he/she needs etc.
Quotes are marked 1 and 2 respectively, indicating the interview from which they are taken.
In the 20 interviews, no differences were found with regard to the topics that the PWD talked about. However, the residents had, in general, become more resigned from the first to the second encounter. An example is Betty, who at the first interview said, “I hope it (life) will be a bit longer”,
1
and during the second interview said, “Now it is over.(…)… Let’s hope it’s not much more”.
2
Still, she talked about the same topics, that is, her earlier life with her husband and children, and how it is necessary to have a positive attitude toward life: “[if you can’t be home], life can’t be [expected to be] better than this”.
2
Themes
Four main topics emerged from the analysis:
1.
“Being in the nursing home is okay, but you must take things as they are”
3.
“Things that make it better and things that make it worse”
4.
“People – for better or worse? Staff, family, and co-residents”
Being in the nursing home is okay, but you must take things as they are
Many of the residents seemed to have a dissolved understanding of time, and they did not necessarily have an understanding of where they were or why they were in the nursing home. Nevertheless, most of them expressed contentedness about being in the nursing home: “…as long as you are not home, it cannot be better than this. (…) 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”.
(Betty)1
Hanna said, “…I am completely very good”
2
indicating that she was content in the NH.
Regarding why they were living in the NH, most of the PWD perceived it as necessary: “[I] need to be in the hospital…”.
(Mary) 2
They understood that they could no longer live at home alone; as Betty said, “It is just that you are not strong enough to live at a farm…and do everything that needs to be done”.
2
Although recognizing that they could not live in their own homes, several of the participants saw living in the NH as a temporary solution: “…it is alright to be here for an evening, a year or a year… so I will not…hurry it or something like that…but when…when… finished I want to go home to her (his wife)”.
(Peter) 1
And Mina said, “I think it is alright, but not all the time, no I don’t want that”.
1
Mary explained why: “[…because it is] a heavy burden [being here]”.
2
None of the residents regarded the NH as a real home. They missed their old homes and wished they could be there. Mina said, “Yes, I would rather be at home, but I probably couldn’t. I am so old (crying) that I couldn’t do anything anymore”.
1
She continues to see the NH not as a home, but during the second interview she says, “It is not home, but I go around dancing and enjoying myself. I do that because I must live my life…”.
2
They tried to make the best of the situation, accepting that they had to follow the routines in the NH: “You cannot sit…and [expect that] it should be like this this this…”.
(Betty) 1
Still, they found it difficult that the days were much alike, as Betty said, “…and it is difficult because it is much the same that recurs”.
2
And Mary said, “No…I…I don’t think it is…it is tempting to…to live… there…I think…it is…much…the same…same”.
1
They talked about adjustment of expectations. Betty explained, “If you can’t be home, you must be happy you are on your feet and can have your own room”.
2
Vera talked about how her expectations came true: “It is…you know how it is, in a nursing home”.
2
They described how they must accept how things are done, as Marta explained, “Yes, I think I like it here…but you cannot maybe…what should I say…pick and ask sort of.... You must take things as they are and just think, no, I must…”.
1
Everything is gone
Most of the residents talked about their past lives and described a feeling of having lost those times. They emphasized the loss of family and home, and some also described the loss of self.
The residents described that, after a long life of working and saving, everything was now gone. Marta said, “I have worked and made so many things and helped…. Gone”.
1
And Vera expressed: “All I have…saved through many years, bought and strived and worked for…it all have to go.. weird….”
1
.
The residents described a feeling of having lost interest in doing things: “I have lost the glow and all such sorts”,
(Vera) 2 and also their capabilities: “I can’t do anything anymore”.
(Nelly) 2
A few of the residents described losing themselves, like Mina who did not recognize herself: “I don’t know, but it is not me anyway. I like to do so much, and suddenly I am an old hag”.
1
Some described themselves as worthless, like Lisa, who struggled to speak and described herself as rubbish: “old…so… rubbish…”,
1
and Nelly, who said, “What can I do? Nothing”
1 and “I am good for nothing”.
2
Several of the residents, particularly those with severe dementia, expressed feelings of loneliness. Lisa said, “…I am…old…” and “I am so…lonely…”.
1
And Ella, struggling to speak, said she was lonely,“…especially during the evenings”.
1
Most of the residents missed people in their families. They expressed feelings of love, as Peter said, “I…love them”,
2
and longing, as Lisa said, “I miss my sister”.
1
Mary said, “My family… always in my thoughts”.
2
Four of the residents felt that their families had left them in the NH and didn’t visit them often enough, like Mary, who said, “…yes…so… I think that…always it is…my family…in my thoughts…and…both…and all…busy…I am…must be…busy busy…busy and happy that I am in neighboring country…”.
2
Things that make it better and things that make it worse
The residents described people, belongings, and activities that made life in the NH better or worse.
As they were dependent on help for most of the activities of daily living (ADL), like dressing and bathing, the assurance that they would get help gave them a feeling of safety: “I feel safe. Someone looks after you”.
(Anna)1
Peter said, “Yes, I do feel safe, there hasn’t been any frights”.
2
In addition, the presence of medical personnel if they fell or became ill gave them comfort. During the observations, it was observed that the presence of the primary nurse made most of the residents smile.
Creating a personal space in the NH by having their own rooms with their personal belongings emerged as important for making things better: “It’s to make it more homely”.
(Betty)1
Mary, who had many hats, said, “Yes…when it comes to hats…I do love…and I think…it is more…fun… fun…with hats”.
1
Betty kept a picture of her husband to feel less lonely: “It is sort of so you don’t feel so lonely…but that he is close”.
1
However, some of the residents described being scared of losing things. Peter, for example, said, “You can risk losing it…(.)…things happen slightly skewed and stuff…”.
2
Belongings were used for reminiscence, but the memories of what used to be caused both happy and sad thoughts. Some used happy memories for comfort in the present situation, like Betty: “I have decided to be very happy about what I had, very, very happy…and family and friends… because it is not coming back”.
2
Others became sad, like Vera: “It has been good…(…)…this I had never believed…never never never… no…that I would sit like this”.
2
During several of the interviews, staff entered the residents’ rooms without knocking. This violation of their private space was obviously something the residents did not like. As Marta said, “She is supposed to help us, and that there, that was simply rude”.
1
Even though all three nursing homes had activity plans, the residents experienced most of the activities as boring. Typical statements were: “Yes [it is boring]”
(Vera)1, (Mary)1
and “It is quiet like the grave here”
(Vera)2
and “I have no interest in anything here”.
(Anna)1
The observations confirmed the statements, as the residents slept through activities provided by the staff, typically quizzes or remembering proverbs. However, a few residents talked about music sessions they enjoyed, and this was also confirmed during the observations when the residents joined in singing. Peter wanted to attend church services when they were offered. No other participants mentioned activities provided by the NH that they wanted to attend.
However, several talked about past hobbies they missed, even if they did not necessarily think they could manage to do them: “…You have to accept the situation, so…to do [the hobby]…no…”.
(Betty) 2
Anna and Vera talked about activities they wanted to do that would make life better, like going outdoors or going to the shopping mall.
A few talked about being independent and that being able to dress, wash up, and tidy their room were important in order to feel content. Vera said, “I want to be independent and…”and “…I use my head…as long as it lasts”.
2
People – for better or worse? Staff, family, and co-residents
Not being alone was described as important, and Vera described how the staff would be there if she needed them: “Can go to them and talk about everything… then I feel safe…”.
1
Anna described how being together with other people made her feel:“… I felt safe you know, it is better to be together with others…”.
1
However, they also described how there are things they cannot talk about, as Peter said, “I will never discuss it with him”
1
and “It is limited, what you can talk about”.
(Peter) 2
The residents preferred to be helped by a few, familiar nurses, and especially the primary nurse, “yes, prefer her”.
(Bob)1
It was easy to see and understand that Bob preferred the primary nurse. During the first day of observation, she was the only one who approached him and talked to him. Peter said, “It is often new…the sorts…consultants…nurses…yes…. It is just like something has torn.... I think you can say he [the primary nurse] is the one I like the best”.
2
However, the residents described having to behave in certain ways and having to accept how things were done. Lisa said, “Yes, they are nice…but we must be nice too”
2
and “Yes and you have to be…I have to put up with…”.
(Lisa)2
Some residents described staff that did not meet or treat them in a way they approved. Marta described how she “got the feeling I am just a brat she has to take care of”
1
and how she felt about the staff: “I can’t tell her I think she behaves rude. You see, she feels very important now, but she is only here to help”.
1
Peter said this about his primary nurse, “His hands are so strong too…and he squeezes a bit too hard…he still got some of that…he wants…I understand he wants me to remember…(…) I don’t have to scream but he understands I think he is too hard-handed…”.
1
The residents experienced the staff as absent and that they often disappeared: “He runs off, you see”.
(Peter)1
When asked, “Is it easy to find the staff?”, Hanna, who had hardly any verbal language at all, replied, “No, it is not easy, absolutely not”.
2 The observations confirmed this, as the residents often sat alone in the living rooms or corridor.