Moments of homecoming among people with advanced dementia disease in a residential care facility

Design

This study took an ethnographic approach with an exploratory observational design based on participant observations of people with ADD. Ethnography provides the means to gain an understanding of how people experience their world. Ethnography has its roots in cultural anthropology and has expanded to include subtypes of ethnography with various theoretical orientations and aims (Creswell, 1998, pp. 58–59). Focused ethnography deals with a distinct issue, situation, or problem within a specific context (Cruz & Higginbottom, 2013; Roper & Shapira, 2000), in this case feeling at home and not feeling at home in a private residential care facility for people with ADD.

Participants and study setting

Nine residents living in a private not-for-profit residential care facility for people with ADD in a large town in Sweden were observed. The residents ranged in age from 74 to 90 years. The residential care facility is situated in a one-story house with an inner garden that is divided into two sections with eight residents in each. There is a communal dining area and TV room. Each resident rents a small, one-room apartment with a kitchenette and bathroom. The apartment was furnished with the residents’ own furniture and belongings and they wore private clothes. Some had especially cherished objects in their rooms or on their walkers, none of the female residents carried handbags. The residents had relatives who regularly visited them. During the study period, 24-hour staffing was provided and one registered nurse (RN) worked day shifts on weekdays. There was also an RN on call who was stationed locally and who was responsible for covering several units during the evenings, nights, and weekends and five enrolled nurses/nursing assistants (ENs/NAs) who covered the day shifts on weekdays. Four ENs/NAs were on duty during evenings and weekends. One EN/NA and the RN were on call and covered the night shifts. General practitioners were consulted regularly. The manager of the facility was responsible for 58 employees.

Data collection and interpretation

Data collection was performed by two of the authors (AN and B-MT), both were Professor Emerita with grey hair and wrinkled faces and one of them walking with a cane. It happened that a resident offered a researcher to take her seat as she seemed to believe the researcher needed it better. Another resident asked when the researchers had been admitted to the nursing home. Although the researchers introduced themselves as researchers and reminded residents of that, residents most often related to them as “one of us”, which facilitated friendly contact. A nurse said she thought the residents might think: “They are more ill then I am, as they think they are researchers”. These researchers spent time with the residents, they had coffee breaks together, looked at pictures, were present when residents talked to other people around them, watched TV together, and participated in devotionals. Sometimes one researcher met with one resident alone in her or his room, and other times observations were performed among a group of residents. Notations were made concerning the residents whose relatives had agreed to the resident being a subject for the study. The data collection concerned what it was like living as a resident with ADD in a nursing home. The length of the data collections varied from 10 minutes to 3 hours with each participant. Sometimes the two researchers observed together, and other times they made observations in different rooms. Data collection was performed on average once every third week over the course of two years. Field notes were always recorded immediately after the meeting with the participants, and when possible they were recorded during the observations and conversations. After each meeting with the participants, the two observers met and discussed their observations. The field notes were recorded in line with recommendations in Emerson, Fretz, and Shaw (2003), which means that they also included reflections from the observations and after the meeting.

For this paper, parts of the data, which are referred to as episodes, were selected for analysis of the residents’ actions and verbal and/or nonverbal expressions that could be seen as indicating feeling at home or not feeling at home. The residents might talk about feeling or not feeling at home or indicate these feelings nonverbally such as standing at the window sighing and appearing confused. In the first phase of the analysis, the field notes were read through while keeping the research question in focus. The episodes were interpreted against the background of the authors’ personal experiences and knowledge of previous research (see introduction), and all three authors discussed the content in order to come to an agreement about how to interpret feeling and not feeling at home.

Ethics

The relatives of the participants with ADD agreed to the person being the subject of data collection during an information meeting about the research project or during personal interviews about their own experiences of having their relative with ADD admitted to and cared for at the residential care facility where the study was performed. They were promised confidentiality and anonymous presentation in the findings. When starting conversations and observations, residents were asked for permission and their reactions were followed during the event. They mostly seemed to enjoy being recognized and if they, as rarely happened, appeared bothered, we finished the activity. The data collection was ended carefully and gradually so that residents would not feel abandoned. The study was approved by the ethics committee at Umeå University (No. 09-099).

Alternating between feeling at home and not feeling at home

Eight residents were sitting in the living room in a half circle. A priest talked, prayed, and sang. The residents took part in the singing, and some also took part in the praying. They seemed familiar with the proceedings. They sat relaxed and seemed to thrive; they seemed at home. When the devotional ended, however, some appeared as homeless as they had before the devotional; they for example paced about seemingly restless and anxious.

Ada told exciting stories from her experiences when she fled her native country during a war. Now she was happy about being in a country at peace. “I feel at home, I am safe in Sweden”, she said. However, she also expressed that she did not feel at home at the ward. She appeared lonely and lost. She pointed to the bed in the sparsely decorated room and said, “I slept there last night, but I do not live here, only temporarily. My daughter will arrange something outside, but I do not live here”. Ada seemed familiar with her environment and said that she owned much of the furniture in the living room. She said that she was the one who bought the piano. She was at home, and she lived and thrived at the ward. “How long have I lived here”, she asked, gesturing with her hands, “I do not know, but I live here now”. Ada had an item that had been important in her work life nicely wrapped in a box in her dresser drawer. She cherished it like a piece of jewellery, held it carefully, and rejoiced in it. When she was busy with her treasured possession, she seemed to feel at home, i.e. she appeared relaxed and smiled. She once sat watching TV in the common living room. When she was invited to have coffee in the kitchen, she stood up and turned off the TV. A researcher said, “You act like you did at home”. “I am at home, I live here”, she answered.

Burt did not feel at home at the ward and said he was waiting for a car that would take him home. He expressed that he was unhappy because he wished to do something important, but he had forgotten what it was. One time he had some paper and pencils and he poked with the pencil and folded and unfolded the paper, and at first he seemed content and at home with the activity. After a while, however, he became more and more heartbroken and his proud posture began to slouch and he wondered if the taxi would come soon and take him home. Some residents who said they did not feel at home at the ward seemed to feel at home in memories of their former home, they, e.g., expressed wellbeing when mentioning it. Burt said he did not feel at home in the residential home, but he liked to think about his spouse still living in their former shared home, the real home. When the spouse told him that she had sold the house and moved to an apartment, he became very sad. “Now, I have lost my real home”, he said.

One day Ann had a rather aggressive and tense”approach”, and did not seem to feel at home when she sat and watched care providers plant flowers in the garden. She gradually changed her attitude, and her posture became relaxed when she helped the care providers with the gardening. She smiled and seemed to be happy when she had a cup of coffee together with her neighbours in the kitchen after the gardening.

May complained about having lost her ability to feel at home. She said that she liked her private room very much and felt that the care providers were friendly and nice. Asked if she felt at home, however, she said that she could neither remember the feeling of being at home nor feel it. “I think it is my brain”, she said, “I can no longer feel at home. I cannot remember how it felt to feel at home”. When she spent a few hours at her previous home, she said that she did not feel at home there either. She had lost her ability to feel at home due to her brain damage, she explained. May never said that she felt at home at the ward, but she occasionally seemed to feel at home by appearing relaxed, content, and happy. These moments occurred, for example, when she shared nice pictures in her favourite book or talked about her adored and handsome husband. May said that she did not like how the care providers always asked her what she wanted and then followed through with her wishes. If they asked her what blouse she wished to wear and she said “the red one”, they dressed her in the red blouse. When asked what she would like them to do, she said that they should say what they thought was best so that she could argue with them. Their tendency to submit to her will make her feel uneasy. She was used to arguing and appeared to enjoy arguing about various matters with the researchers. She appeared to feel at home when she got a little opposition.

Priscilla was very happy in her room. She said she was at home. She said that she was busy purchasing food in the grocery store next door because she was cooking for her children and having tea with friends. However, she was surprised that strange people entered her room now and then, but they were very friendly and nice, and they made her bed and cleaned her room. They urged her to eat. They talked a lot and she said she had a feeling that they thought it was important to talk with her. This resident also showed pictures of her children and grandchildren and showed gifts they had brought her. She did not seem to feel it strange that the children she cooked for were married and had children of their own, but she appeared to feel at home living simultaneously in two worlds.

Waiting to go home to their real home

Some residents emphasized that they were waiting to go to their real terrestrial or heavenly home even though they sometimes seemed to be feeling at home at the ward. Camilla, who had been at the ward for several months, often stood looking out of the window in her room. “I am waiting for my sister. She will come and take me home”, she said. She said she had just arrived at the residential home and would soon leave. Sometimes she said that she had only stayed in the room one night and was about to leave. Tom was longing to die. He wanted something soporific so he could die, but the care providers did not help him. “I do not know how I got here”, he said, “I just want to die, this is terrible, horrible. I do not know how I ended up here, how I could be stuck in here”. Ruth said it was good to live at the ward. However, she longed for her real home, her home after death. Ruth proudly showed off the cherished things she had in her room, the most important of which was her record player. She said that because she loved to listen to gospels she wished to have the opportunity to do that while dying. She had records and hoped to get help turning the record player on. Betty, whose spouse was deceased, said that she was only living at the ward temporarily until she would meet her spouse again. She said, “This is no life, you’re only half a person and there is no life. You just stay here until you get to meet your darling again. I hope so”.

Methodological considerations

Aspects of trustworthiness in studies with a qualitative approach include credibility, dependability, conformability, transferability, and authenticity (cf. Elo et al., 2014). The credibility of our study was threatened in several ways. Most participants had ADD, and their verbal and nonverbal expressions were often difficult to interpret. These problems were addressed in various ways. Our ethnographic approach helped us to get close to the residents, and nearness is important when trying to get insights into the life-world of a person. Sometimes we followed the residents in their daily activities, i.e. we became immersed in the day-to-day lives of the participants (cf. Creswell, 1998). During the data collection, the residents’ reactions to contact with the researchers were observed. They seemed to like being the focus of attention. Perhaps our grey hair and wrinkled faces helped them to get close to the residents. Observations with two researchers present made it possible to discuss what could be interpreted as expressions of feeling at home and not feeling at home, which increased the credibility of this study.

Dependability was ensured in several ways. Field notes were written during the observations and were reflected on, sometimes during, but always after, the observations. We sometimes observed together and discussed our interpretations immediately afterward. Reflectivity is an important dimension in ethnography (Cruz & Higginbottom, 2013). We reflected on possible interpretations of what we had seen and heard after every observation, sometimes by ourselves and sometimes together if the other researcher that had participated in the observation. We believe that these reflections helped us to handle our preunderstanding and distance us from first impressions and thereby increase the reliability of our findings.

Conformability refers to the degree to which the findings can be confirmed or corroborated by others. The manuscript was discussed several times in the research team and in a seminar with other experts in dementia care and was found to be trustworthy.

In order to facilitate the transferability of our findings to other care facilities for people with dementia, we have described the characteristics of the participants in our study and also tried to give rich descriptions of the residential care facility and, to some degree, the staffing. The quotations presented in the findings can also increase the transferability, as they may help the reader to get a picture of the participant in our study.

Authenticity is an important component of establishing trustworthiness in qualitative research. We have addressed the authenticity criterion, or the rigor, in the research process by means of an accurate description of the whole research process from the data collection phase to writing the manuscript. Another aspect of authenticity is the relevance of the study in a societal perspective. ADD causes significant suffering, and gaining insight into the life-world of people with ADD can help their relatives and care providers to reduce their suffering.

Reflecting on getting out of a field study is important and could be done from various perspectives (Iversen, 2009). As we studied residents with ADD the most urgent concern was leaving in a way that would not make them feel abandoned. During the data collection we met the residents 10 minutes to 3 hours once every third week, thus it seems reasonable that they did not become dependent on our presence. They often welcomed us as visitors and expressed their gratitude to having interesting conversations with us.