Away from Home or Returned Home? What Iranian Participants with Dementia Experience while Living in a Culturally Profiled Nursing Home in Sweden

To understand the concept of "home", we first may need to know what a place and place-making are, and understanding a place can affect our perception since it has many meanings depending on the individual and the circumstances.

According to Relph (1976, p49)," place is center of action and intention", and the author writes:" To be inside a place is to belong to it and to identify with it." In comparison, Rowles (2017) emphasizes that place is physical and psychological and highlights that human beings' reaction to a place or even the shaping of the place essentially has to do with the person's accumulated experience of life.

Rowles &Watkins (2003, p 3) argue that life is a continuous process of transforming places into meaningful ones through human habitation and habituation. Habitation plays a vital role in shaping one's personal narrative and connection to a specific location, which is how a space can be gradually transformed into a place through social interaction and developing a sense of belonging. However, Rowles et al (2003) accentuate the pivotal role of personal encounters, engagements, familiarity with established patterns, and social connections in shaping one's perception of a place. In alignment with Larsen's insights from 2009, it becomes evident that our understanding and encounters within a specific location dictate our potential for engagement and initiative and leave an indelible imprint on our sense of self. Rowles (2013, p 11) states that space is essential, but place matters more because it expresses the essence of life.

Place Making

Rowles et al. (2003) discuss the idea of place-making and identify four essential elements: history, habit, heart, and hearth. They emphasize preserving historical significance through tangible objects like photographs or artifacts, which contribute to our sense of identity and connection to our personal and historical experiences. The authors also highlight the importance of habituation and daily routines in creating a meaningful place, as it shapes our personal story and connection to a specific location. The idea of home is seen as a personal space where people feel comfortable and find their identity. It is vital for emotional well-being and is connected to the need for ownership and belonging. The authors emphasized the significance of home as a central place in our lives. It is a place of safety and security and holds special meaning for some people. "For many people, the most intense expression of being in place is provided by the concept of" home" and the experiences of being at home." (Rowles, 2013, p 11).

Already ten years previously, Rowles & Watkins stated:" We suggest that being in place results from the repeated and cumulative process of making spaces into places." Having a place mixed with our personal pleasant and satisfying experiences makes the place feel" home". (2003, p 79)

For some immigrants, moving to a residential care facility may be the last move in a long chain of abandoned homes in various countries – sometimes having left under circumstances forcing them to do so rather than out of free choice (Kiwi et al., 2018). For these people, the sense of home and their actual home have been redefined repeatedly.

Although this is the case for a growing number of people because of global migration, little research has been conducted on how immigrants with dementia define and experience their “home.” As Madison (2006) notes, migration – mainly when made from choice – raises existential severe questions about inter alia the understanding of oneself, belonging, freedom, independence, loss, and home. He suggests that home may best be defined as the place where the individual and the environment “match” (2006, p 12) and that it may be understood better as a ‘person environment, interaction’ rather than as a “place.” Again, little research has been conducted about how this affects self-understanding, perceptions of their needs and the best way to help them feel at “home” as individuals and in the community.

Defining What " Home " Means

Defining what " home " means has not been an easy undertaking. Although the term is very familiar and central to our daily life, a general understanding revolves around and is strongly linked to safety and freedom. Zingmark et al. (1995) defined it as recognition, control, initiative, freedom, safety, privacy, and togetherness. In comparison, Oswald et al. (2006) identified the meaning of home, among others, as ‘emotional’, i.e., a bond involving the experiences of privacy, safety, pleasure, and stimulation. The authors emphasize that the individual's meaning of home is the result of the place-attachment process. Rowles and Chaudhury (2006, p 82) noted, ‘Attachment to a place for elders and how such attachment gets intimately linked to a preservation of a sense of personal identity’. Furthermore, home is the ‘fulcrum’ of the world for elders, and they ‘cognitively differentiate the physical environment into zones of decreasing intensity of involvement away from their homes’, i.e., emotional attachment’ (Rowles, 1984, p. 143). A similar statement is to be found by Frank (2005), home is a concept connected to human memory and emotion. As such, we all are connected psychologically to the home, where accumulated memories reside.

Possessions also shape and reinforce our sense of self in our home. Their residence is significant for many people as it represents their identity and personality (Rowles et al., 2015, p 319). As well as their identification of the concept of home, Rowles and Chaudhury reveal its somewhat sad – but undeniably true – “face”: ‘[…] the context of the home may provoke a range of emotional experiences […] [it] may evoke ambivalent or negative emotions; for example, when family abuse takes place in the privacy of home’ (2006, p 9). Surprisingly, not much is written about home as an unsafe place.

There are two central and fundamental views of the home. First, it is a place-based concept related to the physical environment, and second, a more abstract perspective sees it as a symbol representing family, belonging, love, security, and personal identity (Frank, 1999, 2005), each of which develops over time.

The Sense of Home

The sense of home for older adults is considered a vital resource. Despite their different and distinguished lifestyles, Oswald et al. (2006) emphasize that the sense of home becomes more relevant for older adults who spend most of their time at home.

Ahmadi Lewin (2001) emphasizes that “home” for older adult immigrants means an intense change, involving leaving their home country to live in a new one, which can have different physical and psychological impacts. Furthermore, despite the cognitive challenges that Alzheimer’s disease entails, an impression of home remains in the mind (Frank, 2005) beyond a physical place.

Even though the concept is complex, it can be understood on two primary levels: first, as a place-based concept related to the physical environment, and secondly, as a symbol representing family, belonging, love, security, and personal identity (Altman & Werner, 1985; Doyle, 1992; O’Bryant, 1982; Rubinstein, 1989; Sixsmith, 1986; Sixsmith & Sixsmith, 1991). The second level is more abstract and represents a sense of home (Bulos & Chaker, 1995; Frank, 1999), independent of an actual building or structure; instead, it develops in people over time.

Dementia and the Concept of Home

Despite the cognitive losses that dementia causes, people with dementia can comprehend the concept of home and convey what it means through personal expressions such as drawings and verbal definitions, thereby illustrating the poignancy connected to the term. As mentioned earlier, home is strongly connected with emotions. Therefore, it is crucial to understand the reasoning for someone with dementia to maintain a sense of home through statements such as “I want to go home.” This statement can be understood through three domains: automaticity, universality, and semiotics (Frank, 1999).

Nursing Home, Autonomy, and Independence

'An older adult's home might be a comforting, familiar place although it is becoming burdensome to maintain and unsafe (and therefore a source of anxiety)' (Rowles & Chaudhury, 2006, pp 23). To what extent one can be viewed as independent and the degree to which one can "reduce" or even "measure" autonomy and independence in a nursing home has not been addressed at any great length in the literature.

McColgan (2005) refers to Savishinsky (1991), regarding how nursing homes are curiously named because they offer little medical cures or much that can be said to be like home. Furthermore, they are usually public places, denying a true feeling of having a private life.

Nursing homes try to do something for their residents by recreating a feeling of home, but through surveillance and schedules, they unintentionally impede their progress in this regard. The nursing home provided for the residents in this study did not feel at home, made evident by their constant attempts to leave. Teatime was a way for many of them to escape their surroundings mentally and have a chance to reflect on home and the past with other residents (McColgan, 2005). A study by Paterniti (2003), gave examples of residents adapting nursing home schedules to meet their wants, for example, by constantly eating later than the assigned times, refusing to shower when told to do so, and attempting to do scheduled activities earlier than usual.

Culturally Profiled Nursing Home (CPNH)

According to the Swedish statute, a person with dementia should be placed at the center of any care and nursing intervention. For instance, individuals with significant issues may need 24-h care and medication, which can be offered at specialist dementia nursing homes. The National Guidelines recommend that social services should offer extraordinary accommodation/nursing homes adapted explicitly to people with dementia (The National Board of Health and Welfare (NBHW) 2018).

Anahita (the fictive name of the Culturally profiled nursing home states that: Anahita is a Persian facility for those of you who long for home in your elderly days. At Anahita, we need more than just speaking Persian. When you arrive at Anahita, we want to create a sense of being home in Iran'. We decorated with the help of furniture, carpets, smells, paintings, and other things reminding us of the homeland. There are smaller sitting groups for those drinking tea, and there are possibilities to smoke the water pipe. We have all the classic party (parlour) games, Persian TV, Persian radio, and Persian music. Here at Anahita, we show respect and consideration for the different views on gender existing in Persian culture. For older adults, it can be essential to be cared for by someone of the same sex. Family is important. When you move to Anahita, we are foremost a complement to your family. We will not take over. Your family will still be able to have responsibility.

The NBHW defines person-centered care: ‘When proving person-centered care, it is essential to consider the needs of people with a different cultural or linguistic background. Cultural considerations include, for example, giving the person the opportunity to practice their religion, eat culturally adapted foods, preserve, and maintain their cultural traditions, customs and gain access to staff who speak the same mother tongue, have cultural competence, and can provide security, increase well-being and a sense of home for the person with dementia (2018, p. 86).

In the culturally profiled nursing home (Anahita), all residents had their furnished room, a kitchen, a toilet, and a bathroom, and often family members would bring in reminders (family pictures, mats) from their previous homes. In addition to their own space, they would gather in the dining room to eat together, and in the absence of family members or friends, staff members would often be regarded as surrogates. The only item the older adult received from the nursing home was a bed.

Every resident had a member of staff as the contact person. The contact person reported to family members with the necessary, urgent status report or in case the resident required extra favourite hygiene items. If a family member wanted to drive the resident home for some occasion, the contact person was responsible for preparing him/her, packing the resident's bag, and so on. Sometimes communication did not work as both parties wished, but cooperation between them often went on without any challenges. If the resident's contact person were off duty that day, another staff member would assist the resident.

Residents had different kinds of activities. The activities depended on the ability and needs of the residents. Once or twice a week, they had sit gymnastics. Sit gymnastics was very popular, and many residents participated. Otherwise, when the weather was suitable, they went for a walk. There were individuals who, regardless of the weather, enjoyed going for a walk, especially those who were smokers. Once a week, they played bingo and liked it very much; almost everybody won something, such as hygiene items or chocolate. Residents had different kinds of activities. The activities depended on the ability and needs of the residents. Once or twice a week, they had sit- gymnastics. Sit gymnastics was very popular, and many residents participated. Otherwise, when the weather was suitable, they went for a walk. There were individuals who, regardless of the weather, enjoyed going for a walk, especially those who were smokers. Once a week, they played bingo and liked it very much; almost everybody won something, such as hygiene items or chocolate.

Celebrations, birthdays, and Mother’s- and Father’s Day were essential issues. All traditional and national celebrations were also considered to give the residents a feeling of home. The "concerns" and "sorrows" that relatives/family members had in common (their family member with dementia lived in the culturally profiled nursing home) made them come together, and they often sat and talked to each other about the advantages and disadvantages of the nursing home.

Prayer Room

A prayer room is a cultural consideration. According to NBHW, it is vital to consider needs related to people with different cultural or linguistic backgrounds. Cultural considerations include, for example, allowing the person to practice their religion (NBHW (2018). Most residents in this nursing home were of the Islamic faith, but several Christians were also. The culturally profiled nursing home had organized a prayer room for any resident who wished to perform daily prayers, but this room was never used for its intended purpose. There was no interest in having a prayer room. Not using the prayer room does not necessarily mean that a person lacks spirituality or a sense of meaning in his/her life.

Feeling at Home in the Nursing Home

Numerous scholars have investigated the factors influencing residents' feelings of being at home in nursing homes. Rijnaard et al. (2016) studied the various factors contributing to a sense of home among older adults. They identified two critical situations that support this process. First, a sense of home is fostered in a secure, comfortable, and predictable environment, with residents Fedel at ease and can genuinely be themselves. Second, they found that certain factors significantly impact this sense of home, including psychological, social, and the built environment within the nursing home.

Robinson et al. (2010) emphasizes the significance of having a sense of home, specifically through relational care. Relational care involves understanding the individual beyond their dementia and facilitating regular conversations between staff and family members. As Van Hoof et al (2015) stated, a person who values ​​independence, stability, the source of one's identity, freedom of choice and control, and memories ultimately establishes a sense of belonging associated with personal experiences and emotions.

Place integration refers to the ongoing process in which individuals engage with specific places in their real-life experiences. It involves the continuous effort people put into improving their relationship with these places, leading to a reconnection with the location and the formation of new significance in their lives. In essence, place integration highlights the meaningful and transformative connections individuals can establish with the places they encounter (Cutchin, 2005).

According to Marden et al. (2001), as dementia progresses, many people move into residential care facilities that often attempt to create a sense of home. Due to the different transitions, they have experienced (migration, coping with the onset of dementia, etc.), it is essential to establish their experiential perspectives and contemporary understanding of what home means. However, life values become rooted in day-to-day interactions, so this study aims to explore what Iranian participants with dementia experience while living in a culturally profiled residential home in Sweden.

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