Creating a meaningful everyday life: Perceptions of relatives of people with dementia and healthcare professionals in the context of a Danish dementia village

Abstract

Background

The world’s aging population contributes to an increase in people living with dementia, which is perceived as one of the main causes of disability and dependency for older people. The first dementia village in Denmark was established in 2015, with the intention of providing a safe and meaningful everyday life for people with dementia. The purpose of the study was to explore the way in which relatives of people with dementia and healthcare professionals create and maintain a meaningful everyday life for the residents in a Danish dementia village.

Methods

A methodology for user involvement in public service development and evaluation called ‘The BIKVA methodology’ was used followed by a thematic analysis. A purposive sample of 32 participants took part in the study.

Results

The analysis revealed one main theme, ‘Enabling a familiar and meaningful everyday life in the dementia village’, with three corresponding subthemes, reflecting the way in which relatives of people with dementia and healthcare professionals create and maintain a meaningful everyday life for the residents in a Danish dementia village.

Conclusion

The findings showed that relatives of people with dementia and healthcare professionals were committed to creating and maintaining a meaningful everyday life for the residents, but also revealed different understandings of when, where, and how this could be understood and best be achieved. Furthermore, people with advanced dementia may not be able to benefit from the activities and possibilities provided by the dementia village, since this required resources beyond what could be provided.

Keywords

dementia care facilities daily life family involvement collaboration

Background

The world’s aging population contributes to an increase in people living with dementia, which is perceived as one of the main causes of disability and dependency for older people (World Health Organization, 2017a). In Denmark, 87,000 people are living with dementia (National Dementia Knowledge Centre, 2017), and worldwide, this number is nearly 47 million, making dementia a significant concern to global health (World Health Organization, 2017b).

Dementia is a syndrome caused by different conditions, which result in abnormal loss of brain cells (World Health Organization, 2017a). Dementia is a condition that is progressive and associated with profound physical, psychosocial and existential consequences for the person with dementia and for his or her relatives; for instance, resulting in increased dependency and risk of isolation, particularly as the condition progresses (Farina et al., 2017; Myhre, Tonga, Ulstein, Høye, & Kvaal, 2018).

The Danish health authority has for several years focused on ways to enhance the quality of life for people with dementia and their relatives through a number of national health initiatives, with the Danish national action plan for dementia as the latest example, in which the importance of dementia-friendly communities is emphasized (Ministry of Health, 2016). A result of the Danish dementia initiative was the creation of the first Danish dementia village, which is a way of living that is linked to the global movement of Dementia Friendly Communities that originated in Japan (Miyamoto, George, & Whitehouse, 2011). The Danish dementia village, called ‘Bryghuset’, is a Danish version (i.e. based on Danish values and culture) of the Dutch Hogeweyk dementia village (Jenkins & Smythe, 2013; Weller, 2017). ‘Bryghuset’ was created to offer a safe and familiar way of living for people with dementia and where they could still feel part of the local community. The intention was thus to create a small community that provides people with dementia and their relatives the highest level of freedom, and to experience a meaningful everyday life while living with dementia. Although dementia villages are growing throughout the Western world, the idea of dementia villages has also been criticized, arguing that this type of living is dishonest and basically is a nursing home disguised to look like the ‘real world’, misleading the residents to believe that they are still living in the ‘real community’ (Larsen, 2017; Zwijsen, Niemeijer, & Hertogh, 2011).

According to clinical guidelines and national action plans for dementia in Denmark, care and interventions should be planned individually and based on knowledge about the individual’s personal story, interests and wishes, as well as based on respect for the person’s autonomy, values and integrity (Danish Health Authority, 2013; Ministry of Health, 2016). The Danish guidelines are in line with international recommendations identified in a systematic review, which included 12 international practice guidelines for dementia (Ngo & Holroyd-Leduc, 2015). It is well known that dementia is a condition that may pose a challenge to the person’s ability to participate in everyday life, and relatives are therefore crucial in this process due to their intimate knowledge of the values, interests and life stories of persons with dementia (Grøndahl, Persenius, Bååth, & Helgesen, 2017; Kellett, Moyle, McAllister, Kin, & Gallagher, 2010; Miller, Whitlatch, & Lyons, 2016; Mondaca, Josephsson, Katz, & Rosenberg, 2018). Everyday life can be understood as the life that people live every day including the activities they engage in (Bech-Jørgensen, 1994). Due to the progressive nature of dementia, people with dementia will increasingly experience difficulties with managing everyday life and will require a growing need of support from relatives and healthcare professionals (Farina et al., 2017; Wenborn, 2017). A significant amount of research has identified how relatives and healthcare professionals in care facilities may have different expectations and perceive their collaboration differently (Miller et al., 2016; Petriwskyj et al., 2014; Stephan, Möhler, Renom-Guiteras, & Meyer, 2015). The differences are primarily related to role distribution and treatment decisions in connection with daily care. However, limited research explores the way in which relatives and staff create and maintain a familiar and meaningful everyday life for people with dementia (Grøndahl et al., 2017; Kellett et al., 2010), especially in the context of a dementia village. This knowledge may contribute to enhance the overall quality of life for people with dementia in care facilities and their relatives. The purpose was to explore the way in which relatives of people with dementia and healthcare professionals create and maintain a meaningful everyday life for the residents in a Danish dementia village.

Methods

This qualitative project was part of a larger research project where the purpose was to explore how people with early stage dementia living at home, relatives of people with dementia living in a dementia village (from here on named ‘relatives’), healthcare professionals (from here on named ‘staff’) and volunteers reflect on creating and maintaining a familiar and meaningful everyday life at different stages of the illness trajectory. This study focused on collaboration between relatives and staff during the phase where the residents are living permanently in the dementia village and applied a modified version of a methodology for user involvement in public service development and evaluation, called the BIKVA methodology (Krogstrup, 2018; Krogstrup & Brix, 2019). The BIKVA methodology normally consists of four steps and primarily uses focus groups as the method for data collection. In this study, the BIKVA methodology was carried out in five steps and overall employed a combination of methods (see Figure 1).

Figure 1.

The five BIKVA steps in the study.

Setting and participants

The study took place in a Danish dementia village called ‘Bryghuset’, which means ‘the brewery’ in Danish. ‘Bryghuset’ was established in 2015 as the first of its kind in Denmark in the municipality of Svendborg. It is located in an already existing nursing home in an old building from 1899 that used to house a local brewery. ‘Bryghuset’ can house 125 residents who each have their own apartment. The apartments are divided into: 56 care homes for residents with advanced dementia; 43 residential homes for residents with moderate dementia; seven temporary guest homes; 19 apartments for younger people with mental and physical disabilities; and an activity centre for the residents and for senior citizens of the local municipality. The study was carried out among relatives to residents with advanced dementia living in care homes, and relatives of people with moderate dementia living in the residential homes (from here on named ‘residents’) and staff in a dementia village in Denmark. A purposive sample of 32 participants took part in the study (see Table 1). Different strategies were used to enrol the participants in the study: Information about the study was placed at various locations throughout the dementia village inviting relatives and staff to participate in the project. Participants were also approached directly by the first author, and finally as a result of snowball sampling, where relatives and staff members encouraged each other to participate (Patton, 2002a). The relatives consisted of three daughters, one son, two siblings, two spouses, one of whom was a widower to a former resident. The staff consisted of certified healthcare assistants and helpers with between 1 and 20 years of work experience with dementia. The staff had worked in the dementia village for varying lengths of time, some for many years and had experienced the transformation from a regular nursing home to a dementia village. The distribution of the participants was as follows: five relatives took part in step 2 of the study and eight in step 3. Six staff members took part in step 4. In the final step 28 participants took part in a workshop, consisting of relatives (n = 4), staff (n = 6) and healthcare managers from the dementia village (n = 3), volunteers (n = 5), representatives from user organizations (n = 4), employees working with or responsible for dementia in the local municipality (n = 5) and a representative from a healthcare education (n = 1).

Table 1.

Overview of participants (n = 32).

Participants	Focus-group with relatives (n=5)	Focus-group with staff (n=6)	Semi-structured interviews (n=8)	Photo interviews (n=8)	Workshop (n=28)
Relative A (RA): Sister to resident in care home	X		X	X	X
Relative B (RB): Daughter to resident in residential home	X		X	X
Relative C (RC): Son to resident in care home	X		X	X	X
Relative D (RD): Daughter to resident in residential home	X		X	X
Relative E (RE): Husband to resident in care home	X		X	X
Relative F (RF): Brother to resident in care home			X	X	X
Relative G (RG): Widower to a former resident in care home			X	X
Relative H (RH): Daughter to resident in residential home			X	X	X
Staff 1 (S1): Healthcare assistant		X			X
Staff 2 (S2): Healthcare helper		X			X
Staff 3 (S3): Healthcare helper		X			X
Staff 4 (S4): Healthcare assistant		X			X
Staff 5 (S5): Healthcare helper		X			X
Staff 6 (S6): Healthcare assistant		X			X
Healthcare manager					X
Healthcare manager					X
Healthcare manager					X
Volunteer 1					X
Volunteer 2					X
Volunteer 3					X
Volunteer 4					X
Volunteer 5					X
User organization 1					X
User organization 2					X
User organization 3					X
User organization 4					X
Municipality staff 1					X
Municipality staff 2					X
Municipality staff 3					X
Municipality staff 4					X
Municipality staff 5					X
Health education 1					X

Neither of the authors was involved in the daily care of the residents and had no relation to the dementia village prior to this project.

Pilot interview

A semi-structured interview and a photo-elicitation interview were piloted with one relative before initiating the rest of the individual interviews (step 3). As a result, the sequence of two questions of the semi-structured interview guide was changed to enable a more natural flow of the interview. The data from the pilot interviews were included in the study

Data collection

Data collection was conducted at the dementia village and in the relative’s homes. Different methods were used for data collection.

Participant observations (Patton, 2002b) were collected during 12 days over a period of two months to get a sense of the everyday life at the dementia village, for instance during mealtimes, family visits, music events, Easter celebrations and planned meetings between staff and relatives. Field-notes were recorded after each observation. Focus group interviews (Bloor, Frankland, Thomas, & Robson, 2001) were performed with relatives and staff respectively, using a semi-structured interview-guide with a few open-ended questions, for example in regard to communication, collaboration and everyday life. First author (HP) served as the moderator of the group discussion and the last author (LM) served as an observer and recorded non-verbal communication, as well as asking a few follow-up questions. The intention was to use the format of a group discussion to increase understandings of the topic. Semi-structured interviews (Kvale, 1996) were performed with relatives. The interviews were guided by a few open-ended questions that were informed by the focus-group interviews. After the interviews, relatives were asked to partake in photo-elicitation. Photo-elicitation is based on the idea of incorporating a photograph into a research interview (Harper, 2002) and was based on researcher and participant generated photographs. In regard to the latter, relatives were asked to take photos of things, places and situations that illustrated their understanding of collaboration and everyday life in connection with the dementia village. The relatives could take as many photographs as they wished and could take new and/or choose photographs they already possessed. Photo-elicitation (Harper, 2002; Rose, 2012) was carried out to facilitate additional reflections. During the photo-elicitation interviews relatives were asked to describe each photograph and to share thoughts and reflections and reasons for taking or choosing the photograph. The relatives were finally asked about photographs they wanted to take but did not, due to a restricted timeframe or simply because they forgot. The intention with the individual interviews was to gain a deeper understanding of the subject matter. The interviews ranged in length from 47 minutes to 1 hour and 42 minutes. The workshop was carried out to present preliminary results from the present study, as well as from two other studies that were part of the overall research project, with the intension of involving the participants in the research process and to facilitate additional reflections. The workshop lasted three hours and was held at an educational institution.

Data analysis

Data from stage 1–4, as well as the data from step 5 that was focused on the purpose of this study, were included for analysis in this study. The material for analysis thereby consisted of: 2 focus group interviews, 16 individual interviews, data from one group discussion from the workshop and 57 photographs.

Interviews were digitally recorded and transcribed verbatim. Transcripts were imported to NVivo software for data management and coding (QSR International, 2018). The interview transcripts (n = 18) were analysed thematically (Braun & Clarke, 2006; Pink, 2013; Rose, 2012). Photographs (n = 58) were not analysed beyond the transcripts.

Firstly, the text was read several times to get a sense of its overall meaning. The text was then read again while highlighting meaning units that conveyed different aspects of collaboration. The meaning units were then read again and divided into sub-themes. Then, meaning units within each sub-theme were read and viewed for similarities, differences and nuances, resulting in some of the sub-themes being combined and new ones added. This process was repeated several times, which resulted in one main theme with three corresponding sub-themes. In the final phase, the complete material was read again and the main theme and sub-themes were viewed in relation to the research purpose. To enhance trustworthiness, an audit trail of reflections and decisions was kept throughout the research process. Interpretation of the findings was presented and discussed with the participants during the workshop to enhance the overall understanding. The findings were also discussed with researchers at the Health Sciences Research Centre, University College Lillebaelt and among the co-authors.

Translation of participants’ quotes

After analysis of the interview transcripts, illustrative quotes were translated from Danish into English, following the recommendations of van Nes, Abma, Jonsson and Deg (2010). The initial translation was carried out by the first author, which then was checked by a professional translator. Quotes and their meaning were discussed among the authors after the translation and compared to the Danish original in order to preserve the intended meaning.

Ethics

The study complied with the Helsinki declaration (World Medical Association, 2013) and was registered with the Danish Data Protection Agency (Journal number: 2015–57-0016). Participants were provided oral and written information about the study and were informed that participation was voluntary, and that withdrawal was possible at any stage of the study. Oral and written consent was obtained. Data were handled with confidentiality and identifiable information was anonymized. If the participants provided recognizable images (e.g. faces), the written consent specified how these could be displayed, what they could be used for and for how long.

Findings

The analysis revealed one main theme, ‘Enabling a familiar and meaningful everyday life in the dementia village’ with three corresponding subthemes: (1) The everyday life is what matters, (2) The importance of still being part of the ‘real’ life outside and (3) Using the opportunities in the dementia village.

Relatives and staff both emphasized the importance of enabling and maintaining a meaningful everyday life for the residents, but could at times have different understandings of what a meaningful everyday life consisted of, for instance in regard to the choice of activities and the context where these best could be pursued. The main theme will be unfolded in the three subthemes in the following sections.

The everyday life is what matters

Relatives and staff described how they individually and collaboratively worked to enable a meaningful everyday life for the residents. For the relatives it was important to engage in familiar activities they used to share with the residents and that used to characterize their relationship based on their role as an adult child, a sibling or a spouse. This was described by a husband of a resident:

I think my wife missed the smell of food and the sense of the daily life that we used to share. I therefore organized a food-day every other week where we all make food together. We peel the potatoes and help in any way we can – both relatives and residents. Last Monday we made an omelette with tomatoes, potatoes and chives that I had planted on the balcony outside my wife’s apartment (RE – husband)

RE described how he and his wife used to enjoy making food together and the quote reflects how the familiar smells and preparation of food, for him, was closely linked to his understanding of everyday life with his wife. The way he had made it possible for the residents to grow their own vegetables also reflected a valued activity he and his wife used to share in their own garden, and also reflected the importance of still being able to contribute to the everyday life of his wife. This was also seen in the way RE every Sunday would drive his wife home to their house so they could continue to eat lunch together and take a walk around their garden the same way as they used to.

The staff also emphasized the importance of enabling a meaningful everyday life for the residents, but could at times have a different perspective of what this entailed, for instance in regard to the daily activities, as shared by a staff member:

The relatives have a lot of expectations in regards to what we can do. Sometimes we do start bigger activities, but not always because an activity can be many different things. The relatives often ask for more activities, but sometimes just being able to continue to walk to the dining table can be an activity in itself for the residents and this can be difficult for the relatives to understand; they prefer larger activities such as making a meal together or going for longer walks (S6 – healthcare helper)

The quote illustrates how the staff to a larger extent base their choice of activities on an assessment of the here-and-now condition of the residents and what they are able to handle, and how these choices may differ from the wishes and expectations of the relatives. However, relatives and staff also shared stories of how they would work together to organize larger activities, for example in connection with celebrations. A relative described how he and a staff member organized a Midsummer celebration together:

One year for Midsummer I was thinking that we should do something, because the last two years nothing had been arranged. So one from the staff and I organized a really nice evening with grilled hotdogs and potato salad. I also arranged a bonfire and one from the staff had printed the Midsummer hymn and brought songbooks so everyone could join in and sing together. It was a really nice evening. (RG – widower)

RG’s idea of celebrating Midsummer, which he organized in collaboration with a staff member, became a very positive experience, not only for him and his wife, but also for other residents, relatives and the staff, who he subsequently had received many positive responses from.

The importance of still being part of the ‘real’ life outside

Like RE, who would take his wife home each Sunday, several relatives felt that it was important for the residents to maintain a connection to the life outside the dementia village and they therefore prioritized to enable this, as described by RH who talked about how her trips outside with her mother enabled her mother to still contribute in a way that had always been important for her:

My sister and I enjoy taking our mother to the local museum where they have a really nice café in their garden. It has always been very important for my mother to contribute and pay for all of us when we go out together and it’s still imperative for her to do this. It has to do with old virtues. She gives me 20 kroner, which of course in no way covers the expenses, but I take the money because this is something that is important for her and has to do with contributing and still being aware of the importance of this. (RH – daugther)

The quote illustrates the importance for residents to have opportunities to still be able to contribute to the lives of others, in particular to people they felt close with and also how the relatives could enable and support this. Some of the relatives described how activities outside the dementia village in more ways provided this opportunity for the residents.

Another aspect of taking trips outside the dementia village was shared by RA when she emphasized the importance of continuing to take her sister to appointments in the local municipality:

I drive my sister to her hairdresser in town because it's such a good experience for her to get outside the dementia village, to the real life. I also take her to the dentist and doctor, because then she has to sit and wait in the waiting room with the other patients and feel that she is part of a normal daily life. (RA – sister)

Although some of these services were available and could be provided inside the dementia village, RA found it important that her sister experienced that she still was part of, what she and other relatives named, the ‘real life’ outside the dementia village and she believed this to be a healthy stimulation for her sister. Other examples were RD who would take her mother to an outdoor concert and RB who enjoyed taking her mother on walks to where her mother used to live and to places that they used to visit together (Figure 2):

My mother loves when we take a trip down to where the old ferry used to sail. There is a small beach where we use to spend a lot of time when we were children. Then we enjoy an ice-cream together while we sit on a bench and look at the ships that sail by and talk about the things that we see. This is something that we both really enjoy. (RB – daugther)

Figure 2.

Enjoying an ice cream on the beach.

RA and RB both expressed that they felt it was important for the residents to maintain a connection to former experiences and the life they had before they moved into the dementia village, for instance by visiting places that used to hold special meaning to the residents. However, the staff expressed a different perspective on this:

I think that the relatives’ need for the residents to maintain a life outside the dementia village may be linked to a lack of awareness of the current condition of the residents. It may not be the desire of the residents to go to a dentist outside the dementia village, and they may not be able handle this. They may enjoy it in the moment, but we sometimes see residents that are completely confused and restless after a trip outside the dementia village (S1 – healthcare assistant)

Several staff members emphasized that they were responsible for all the residents in the unit, and described that when a resident returned home in a state of confusion it could negatively impact the rest of the residents and the atmosphere in the entire unit.

Using the opportunities in the dementia village

Many of the relatives and staff had witnessed the transformation from a regular nursing home to a dementia village and all the changes this had resulted in, for instance the creation of a small ‘street’ with a shop, a kitchen, a hairdresser, a fitness room, a music library and a ‘man cave’, and they primarily experienced these changes as positive:

I think the development is fantastic. My mother enjoys to shop in the small store and the possibility to try on clothes and to be able to buy some chocolate or a piece of soap, is very important to her, because this is something she misses a lot, since she no longer can go out (of the dementia village) on her own (RD – daughter)

As Figure 3(a) to (d) shows, the shop is rather small, but provides different features, such as a kiosk where the residents can by fruit, chocolate and toiletries and a second-hand store with clothes and other knick-knacks. Although most relatives and staff were very positive in regard to the changes made in the dementia village, they also questioned whether the residents living in the care homes could benefit from these changes, as expressed by a relative in the following quotes:

At the end (of my wife’s life) the changes would not have mattered to my wife. Maybe to sit in the garden, but she would not have been able to use the fitness room or the shop. Earlier in her illness and when she first moved in, she would have enjoyed all the changes. I think the shop is great and the possibility to get a haircut or to get one’s nails and face done. My wife used lipstick until the day that she died. (RG – widower)

Figure 3.

A view of the ‘street’ (a) and the small shop (b-d) in the dementia village.

Something similar was expressed by a staff member (Figure 4):

The relatives are asking what their mother or sister are getting out of the nursing home being turned into a dementia village. They can see that our work hasn’t changed and we are not getting more time or staff. They see that their mother is just sitting in a chair without being able to go anywhere, so what is she getting out of the dementia village? (S4 – healthcare assistant)

Figure 4.

Watching the life outside.

According to S4, other relatives and staff members, the different opportunities for new activities primarily benefited residents with moderate dementia, since it could be difficult for residents with advanced dementia to use the different activities in the dementia village, because it required support beyond what was possible for the staff within the given resources, for example to take a resident for a walk in the garden. This was also documented during participant observation, where most of the everyday life of the residents with advanced dementia was observed to take place in the units. A consequence of this was also addressed by a relative:

Some of the residents who are able to walk around on their own have been down to feed the chickens, but my wife cannot and is therefore not able to join in on the conversations about the chickens. I think that it’s a dilemma that they create all these great things here, but there are so many people that are not able to use them because they are unable to walk on their own and there’s nobody to take them. (RE – husband)

Part of the dementia village is a large park with different features, such as a small lake with ducks, a caravan and a henhouse. The quote shows that as with the indoor facilities, it may likewise be difficult for several of the residents to use and enjoy the activities provided in the outside environment.

Discussion

‘Enabling a meaningful everyday life in the dementia village’ was the main theme that emerged from the empirical data, reflecting the way in which relatives of people with dementia and staff experienced the everyday life of the residents in the context of a Danish dementia village. The data showed that both groups were committed to creating a meaningful everyday life for the residents, but also revealed different understandings of what this entailed, for example in regard to when, where and how a meaningful everyday life could be understood and best be achieved.

According to Hasselkus, people derive meaning from their ability to make sense out of what they experience in everyday life situations (Hasselkus, 2011). An everyday life can be understood as the life people live every day, which is maintained, recreated and continued through a person’s ability to manage individual, interpersonal and societal everyday life conditions (Bech-Jørgensen, 1994). Moreover, meaning and culture are embedded in everyday life and understandings of what constitute a meaningful everyday life are thereby highly individual. The impairments resulting of the progression of dementia gradually impeded the residents’ ability to handle everyday life conditions and the ability to articulate their understanding of a meaningful everyday life. The residents therefore increasingly became dependent on others, such as relatives and staff, to manage these conditions, as well as to facilitate a meaningful everyday life (Farina et al., 2017; Yong & Price, 2014). This may pose a challenge and a potential quality problem, because how can meaningful everyday lives be enabled, if it is not known what this may entail for those in question? (Ramian et al., 2010). The idea of a dementia village is an attempt to meet these challenges, with its vision of creating an environment that allows the residents to stay autonomous and to continue a meaningful and familiar everyday life while living with dementia (Weller, 2017). However, the findings identified that this was not always the case for a large group of residents. Many of the new facilities and activities that had been established as part of the transformation from a regular nursing home to a dementia village, was situated and provided separate from the residents apartments/living areas, for instance, as part of the ‘street’ or in the outdoor garden/park. Although the dementia village was created to be a secure and safe environment for the residents to move around in, many of the residents were not able to seek out these areas and opportunities on their own. It was described as a dilemma by relatives and staff that a large group of the residents were not able to use the new facilities and activities without support from others, and they questioned how much the everyday life in fact had changed and improved for the residents as a result of the transformation.

An identified dilemma was also in regard to the expressed perspectives of the life inside the dementia village vs. the ‘real life’ outside the dementia village as articulated by some of the relatives, and how this in some cases could be perceived differently by the two groups. Other studies have found that relatives and staff may have different perspectives on ways to collaborate in regard to the everyday life of people with dementia (Aveyard & Davies, 2006; Mariani, Vernooij-Dassen, Koopmans, Engels, & Chattat, 2017; Miller et al., 2016; Petriwskyj et al., 2014; Stephan et al., 2015), but to our knowledge, none have looked at this from the viewpoint of a dementia village. For the relatives in this study, it was perceived important and a healthy stimulation for the residents to experience how they were still part of the ‘real life’ in the local community and thereby to have the opportunity to relate to societal everyday life conditions (Bech-Jørgensen, 1994). The staff had a different perspective, based on their experience that indicated that this type of stimulation could be counterproductive and result in increased confusion and anxiety for the individual resident, but could also negatively impact the everyday life for the rest of the residents in the units. Lilja and Josephsson (2017) found that when looking at studies reporting diverse perspectives between relatives of people with dementia and staff, a distinction can be made in respect to perspectives of participation, showing that relatives and/or people with dementia tend to focus on participation in regard to everyday life decisions, whereas the perspective of healthcare professionals is more inclined to focus on participation in respect to health benefits and independence (Farina et al., 2017; Mondaca et al., 2018). Similar findings were identified in this study, adding to the knowledge base by exploring perspectives on collaboration between relatives and staff in regard to everyday life in the context of a dementia village.

Studies have found that engaging in shared and previously meaningful activities may bring a sense of belonging and closeness between people with dementia and their caregivers (e.g. relatives and staff) (Hasselkus & Murray, 2007; Muir-Hunter & Montero-Odasso, 2017) and as an important dimension of person-centred care in nursing homes (Mondaca et al., 2018). Moreover, research has identified the possible benefit of using life stories as ways of getting to know the person with dementia in respect to previously meaningful activities and personal values (Grøndahl et al., 2017; Kindell, Burrow, Wilkinson, & Keady, 2014). Both relatives and staff were committed to creating meaningful moments for the residents, but had different ways to achieve these. The relatives based these moments on prior experiences, for instance in regard to engagement in activities they used to share with the residents or they would go to places they used visit together and thereby were familiar to the residents. The staff also based their choice of activities on knowledge about the residents’ earlier life, but to a larger extent took the residents’ current condition into account as part of a professional assessment of which activities and contexts the residents were able to handle and how this would affect them beyond the immediate moment. The findings indicate that a more systematic and collaborative way for relatives and staff of working together to create meaningful and joyful moments in the day-to-day life is needed, for instance through systematic use of life stories. The relatives are able to portray the person they know and love, and provide information about former meaningful activities of the residents and the staff are able to provide professional knowledge about ways to adapt these activities to the resident’s current condition as the illness progresses (Kellett et al., 2010; Wenborn, 2017).

The concept of Dementia villages has been criticized for primarily satisfying the needs of people without dementia, such as relatives and staff (Larsen, 2017; Smallbrugge, Zwijsen, Raymond, & Gerritsen, 2017), which the findings in this study to some degree support. When the study was completed the park and garden area of the dementia village was still under development. The development was carried out in collaboration with residents, relatives, staff and volunteers, to provide the park and garden with the possibilities for activities the users find meaningful, for example a playground for visiting children, birdhouses, a henhouse, a caravan with garden furniture, an outdoor fireplace, tables and benches, a flower and herb garden. The findings in this study support the need for creating environments that provide various possibilities of engagement in meaningful activities in the outdoor as well as indoor environment in order to enhance the overall quality of the lives of all the residents living in the dementia village. However, the findings also indicate that in order for residents with advanced dementia to take advantage and benefit from the possibilities provided in the dementia village, more staff and volunteers are needed.

Methodological considerations

There were both strengths and limitations to this study. The use of the BIKVA methodology was considered a strength because of its high level of user involvement in all stages of the research process. Also, the use of multiple methods such as focus group and individual interviews, participant observations and photo-elicitation proved to be a valuable way to elicit a deeper understanding of the views of both relatives’ and staff’s perceptions of their collaboration in the context of a dementia village.

The residents were not included in this study, which turned out to be a limitation. The reason for not including the residents was that this was beyond the scope of the study with its focus on the collaboration between relatives and staff. However, including the voices of the residents could most likely have provided valuable information about their perspectives on what a meaningful everyday life entails in the dementia village. This may be a suggestion for future research.

Conclusion

This study explored the way in which relatives of people with dementia and healthcare professionals create and maintain a meaningful everyday life for the residents in a Danish dementia village. The findings indicated that both groups were committed to create a meaningful everyday life for the residents, but also revealed different meanings of when, where and how a meaningful everyday life could be understood and best be achieved. The findings showed that people with advanced dementia were not able to take advantage and benefit from the activities and possibilities that were provided in the dementia village, since this required support beyond what could be provided.

The study provides valuable knowledge of how relatives of people with dementia and healthcare professionals create and maintain a meaningful everyday life in the context of a dementia village, which to our knowledge have not been explored earlier.

Footnotes

Acknowledgement

The authors would like to thank the participants who took part in this study.

Authors’ contribution

HP and LM designed the study. HP planned and carried out the data collection and analysis and wrote the manuscript. LM participated in data collection for the focus group interviews. HP and LM discussed the results and LM and LFP provided critical feedback to the final manuscript.

Declaration of conflicting interests

The author(s) declare that there are no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Hanne Peoples, MSc.OT, PhD, is a lecturer at UCL University College, Health Sciences Research Centre, Odense, Denmark.

Line Friis Pedersen, RN, Master of Science in Public Health, is a senior lecturer at UCL University College, Health Sciences Research Centre, Odense, Denmark.

Lene Moestrup, PhD, RN, Master in Health Science, is a senior lecturer at UCL University College, Health Sciences Research Centre, Odense, Denmark.

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