The Experience of Relations in Persons with Dementia: A Systematic Meta-Synthesis

Strauss [1] has stated that to each and every single person there is nothing general about life - life is in the details. From this perspective, lived experience and lived understanding of illness and context are important aspects of healthcare.

The psychosocial dimension often influences a person's health from an overall perspective. House et al. [2] showed that good, robust social relationships have as much of an impact on physical health and length of life as other lifestyle-related components. Crooks et al. [3] found that larger social networks have a protective influence on cognitive function among elderly women. Relationships will influence biological, psychological, and social mechanisms [4,5]. It is not only being involved in social relationships or the size of our network that counts but also how a person experiences the social relations that are of great importance. Individuals who experience positive support from their family and friends describe their life as more meaningful and valuable than others [6].

Several studies have described how dementia influences a person's experience of psychosocial aspects. In one meta-synthesis of dignity in dementia care, Tranvåg et al. [7] stated that worthiness and sense of self are particularly important for persons with dementia (PWD). Steeman et al. [8] reviewed qualitative studies of early-stage dementia and found that individuals living with dementia experience threatened feelings of security, autonomy and being a meaningful member of society. In the systematic review of qualitative studies by Strech et al. [9], social and content-dependent aspects were emphasized as important ethical issues in dementia care. In a qualitative study of the perspective of anxiety in dementia, Qazi et al. [10] stated that surroundings and relations to others are important aspects of the development of anxiety in this group. Furthermore, 2 qualitative studies on ethics by Heggestad et al. [11] and Tranvåg et al. [12] highlighted that a lack of freedom and the feeling of not being confirmed and respected as an autonomous person might threaten personal dignity in PWD; moreover, relational interactions will preserve dignity for the same group of persons.

Several single studies have explored perspectives of how lived relations are experienced by PWD, for example how PWD hold on to their roles in social relationships in which they experience being valuable to others [13], the importance of deep, long-term friendships that still remain [14], and how PWD adjust to their relational situation of feeling incompetent, but still loved [15]. Additionally, one study focused on how PWD feel useless and a burden to their family and therefore avoid sharing their thoughts and worries in order to protect the family and themselves [16]. Considering how important relationships with others are for health and well-being, the challenges faced by PWD, and the help and support PWD require, there is a need for a systematic review that synthesizes the knowledge on this particular perspective.

Lived relations with others are social and cultural phenomena that cannot be separated from the life-world perspective [17]. This meta-synthesis is guided by the theoretical frame of the Dutch philosopher Max van Manen [18], who stated that the grounding level of human existence has fundamental and thematic structures. The structures of the human life-world, as experienced in everyday situations and relations differ from human to human and during a day or a period. van Manen identified four fundamental existential themes of the life-world to describe and constitute the complexity of the life-world: (1) lived body, (2) lived space, (3) lived time, and (4) lived others.

According to the lived experience of the body, van Manen postulated the position of the body by describing human beings as living in the world with the body, and living and being in relation with others through the body [18]. The experience of lived space is described as the “felt space.” The experience of space is often pre-verbal, in contrast to mathematical space or the length, depth, or height dimensions of space. The experience of lived time covers the experience of perceived time as opposed to clock time or objective time. Lived time describes our temporal way of being in the world. The three dimensions of past, present, and future constitute the horizons of a temporal landscape.

According to the fourth existential describing lived relation to other persons, lived other, we share an “interpersonal space” with the people around us. When we meet other persons, we have the opportunity to develop a conversational relationship, which allows us to transcend ourselves. van Manen highlights that within the experience of others, human beings search for a sense of purpose in life, meaningfulness and grounds for living.

The existentials may be reflected upon separately, but they are interwoven and only as a whole will they constitute the life-world. van Manen claimed that a changed experience in one of the four life-world existentials would influence the others and therefore the experience of the life-world as a whole [18]. However, in this systematic meta-synthesis, we will emphasize the perspective of lived others.

The aim of this systematic meta-synthesis was to interpret and synthesize PWD's experiences of lived relations with others.

An interpretative qualitative meta-synthesis was conducted, inspired by the approaches and methods described by Paterson et al. [19] and Zimmer [20].

Literature Search and Selection

We conducted a systematic, computerized search of MEDLINE, Embase, CINAHL Complete, PsycINFO and AgeLine. The search strategy combined MeSH terms and text words for different types of dementia with different descriptions of experience. The combinations of search terms are shown in Table 1. Studies were restricted to peer-reviewed research articles, qualitative studies with best specificity, written in the English language and published between January 2004 and May 2016. The searches resulted in 1,309 articles, of which 131 were identified as eligible. A flow chart for the selection of articles is presented in Figure 1.

Two pairs of authors (E.K.G. and S.E./L.K.J. and S.E.) independently reviewed the titles, abstracts, and, in some cases, the full articles of all the identified studies to ensure that there were always 2 authors selecting the articles in terms of screening, eligibility and inclusion, according to the PRISMA standard of systematic reviews [21]. Disagreement was resolved by discussion, and, if necessary, by consulting one of the other authors. Studies were included if they met the following criteria: (1) sample of PWD only; (2) qualitative interview as a research method; (3) persons' with dementia voices should be explicit; and (4) describing experiences of lived relations with other persons. Studies were excluded according to the following criteria: (1) mixed sample or uncertainty due to dementia (i.e., probable or possible dementia), and (2) studies of a certain intervention.

One hundred and thirty-one full-text articles were read and reviewed according to the CASP criteria for qualitative studies (http://www.casp-uk.net/#|casp-tools-checklists/c18f8). The quality of all studies was assessed by pairs of authors (L.K.J. and E.K.G./L.H.F. and K.S./A.-S.H. and S.E.). Disagreement was resolved by discussion, and, if necessary, by consulting one of the other authors. The CASP appraisal tool includes the following 9 criteria: (1) clear statement of aims; (2) appropriate choice of method; (3) appropriate research design; (4) congruence between recruitment strategy, aims and research; (5) data collection method addresses the research issue; (6) relationship between researcher and participant was considered; (7) ethical issues were considered; (8) process of data analysis was sufficiently rigorous; and (9) clear statement of the findings. Each criterion was given an equal weight (i.e., 1 point) for a maximum score of 9 for each quality assessment per article. A score of 9 was considered high methodological quality, whereas 7-8 points was considered moderate quality; see Table 2. Only studies with moderate (13) and high quality (50) were included in this review. Five studies were excluded due to low quality (scores <7). This meta-synthesis is based on 63 articles.

The meta-synthesis includes interviews with 874 PWD. In 13 of the studies, the participants were living in nursing homes or other care facilities. In 55 of the studies, individual interviews with PWD were the main data collected. Eight studies performed interviews with dyads or pairs, and 4 studies performed focus group interviews. The included studies are presented in Table 3, along with the information described in the different papers (see Table 3).

The abstraction process was conducted according to the principles of interpretative synthesis [22] by focusing on the development of concepts based on the data from primary studies and further developing and specifying theories that integrated those concepts [23]. The analysis was inspired by the analytic approach of Graneheim and Lundman [24]. The analytic process comprised 5 steps:

In the first step, pairs of authors (L.K.J. and E.K.G./L.H.F. and K.S./A.-S.H. and S.E.) read and reread one-third of the papers each. The results from each paper describing lived relations for PWD were extracted as direct citations into a form created for further analysis: “meaning units,” according to Graneheim and Lundman [24].

Three of the authors (A.-S.H., E.K.G., and S.E.) conducted the further analysis of the descriptions of lived relations for PWD.

In the second step, meaning units were further condensed and labelled with codes to organize the material. The third step involved comparing codes, identifying similarities and differences, and structuring the codes into subcategories. The 8 subcategories identified through this process were ultimately gathered into 3 categories in the fourth step to describe the manifest meaning of the material (Table 4). In the fifth step, the comprehensive understanding phase, the categories were summarized and reflected upon to reach a presentation of the text as one overall, latent theme.

The analysis revealed three categories: (1) change in life; (2) change in relations; and (3) maintenance of meaningful aspects of life. The categories were further divided into subcategories, which described the extracted meaning from the selected areas highlighted in the included articles, see Table 4.

This category is differentiated into the following subcategories: (a) new roles and different social status, and (b) protecting roles and stabilizing life. The person's experience of living with dementia was characterized by challenges regarding their roles and social shifts. In addition, the process of adapting to these changes was essential. The adversity of the descriptions presented differs from a position wanting to stop the progression of the impairment to realizing the need for help, accepting the new roles and the changed status, and appreciating the protection and support from family and friends. For the PWD, the social environment and the network represent a stabilizing aspect and help them to avoid thoughts and worries about the possible progression of the disease.

New roles and different social status consist of the declining functional levels that affect the person's position in the family and relations with significant others. In terms of reconstructing roles and identity, the person's experiences of changes in life included the social environment, and the next of kin become more protective than before.

Protecting roles and stabilizing life describe what the person does to compensate for a lack of ability, such as the ability to communicate. The person is trying to normalize the situation and cover up the dementia. Some individuals are trying to spare close relatives from grief.

This category is separated into the subcategories: (a) being disconnected, (b) being dependent, (c) being a burden, and (d) being treated. All of these subcategories are incorporated into a state in the PWD. By using the verb ‘being', we have interpreted the statements given as an active presentation, as this is how the PWD describes the changes in relations. The presentation highlights how the person experiences himself/herself, based on the reflection from the surroundings.

Being disconnected represents the distance from social relations and known activities. The experience of withdrawal, discontinuity, isolation, restricted freedom, and homesickness (for those living in a nursing home) might be present. The distance could be understood as either wanting to be disconnected from others, or others disconnecting them. People around them might not be able to understand and thereby are not able to reach the PWD, or the PWD may feel like he/she is not being treated as a fellow human being and that their contact is restricted.

Being dependent is a consequence of the functional impairment in activities of daily living and reduced cognitive and social function for the PWD. The PWD might experience loss of adult competence at several levels. Family and friends must take on the function as caregiver when the PWD lacks the ability to continue with his/her daily activities.

Being a burden is expressed as the experience of family and friends struggling with them. PWD experience being a burden and being sensitive to the consequences for their caregivers.

The last subcategory, being treated in paternalistic ways, consists of how family, friends and healthcare personnel behave towards the PWD. Being treated describes care without choices and the ability to influence the action. The approach might be experienced as lack of autonomy, exclusion, betrayal, and a feeling of being treated like a child.

The third category revealed two subcategories: (a) supportive interactions and (b) being with peers. The studies emphasize that both old and new relationships play significant roles in maintaining important aspects of a meaningful life.

Descriptions of the supportive interactions incorporate maintenance in terms of adjusting to the situation and accepting the situation. Family and others might give practical and emotional support, and thereby play an essential role. We have selected a statement from one of the articles that puts into words the essence of the supportive interactions: “Family steer me with invisible wheels” [53]. In addition, friendships, family, and engagement in spiritual communities seem to be particularly important.

Being with peers represents the valuable and meaningful dwelling with others in the same situation. On one hand, the common situation for PWD is interpreted as being part of a group that is engaged in the same activities. Being with peers reduces the experience of isolation, shapes a feeling of being accepted as they are, and thereby supports their identity. On the other hand, the companionship in an institution might be difficult, and some individuals avoid specific patients and staff.

An overall synthesis of the categories generated from the included articles reveals the comprehensive understanding and the latent meaning expressed as: Living a meaningful life in relational changes. Most of the statements represented a type of relational change. However, the expression of the PWD always seems to incorporate their fulfilment of a meaningful life during the different stages of dementia. The three categories: (1) change in life; (2) change in relations; and (3) maintenance of meaningful aspects in life, all represent the process used by the PWD in terms of shaping their new living situation and their struggle for meaningful relationships in life, despite the dementia-related changes.

The aim of this systematic meta-synthesis was to interpret and synthesize PWD's experiences of lived relations with others. This study shows that relations with others such as family, friends, neighbours, and healthcare personnel are important in the lives of PWD in different ways. The included studies had different perspectives on how social relations might change for individuals with dementia and describe the vulnerable experience of being disconnected from others; being dependent on family, friends, and healthcare personnel; feeling like a burden to close relatives; and being a person who is treated in paternalistic ways. Some of the studies also emphasize the importance of social relationships and what others can do to meet and support the PWD. However, some studies describe that it is important for PWD to protect themselves and describe the efforts they make to stabilize their lives and maintain relationships. Some studies highlight that PWD seem to protect themselves by avoiding challenging social relations.

From the perspective of PWD, the life changes after receiving a diagnosis of dementia involve an altered social status and new social roles. Every person receiving the diagnosis of dementia has a life story, and relations are an essential part of that story. The person is a mother or father, daughter or son, friend, spouse, colleague, and part of a family, a network of friends, and a society, etc. Being in relationships with others is important to our identity and our experience of self. The experience of social relationships is a crucial factor in the quality of life [25]. Relationship with others might give us a sense of security; we feel that we belong to someone, and, in a particular setting, we mean something to other people and we have particular roles and tasks. Both van Manen [18] and Ricoeur [26] state that a person's life-world constitutes a dialectic between the past, present, and future. When a story is being told, the past will be brought into the present, and from that point of view, an individual will be looking into the future. From this perspective, the life-world does not only represent the “here and now.” The present perception of lived relation with others also has a connection to the past and future.

The phrase living a meaningful life in relational changes describes the essence of the PWD experience of lived relations with others. When close relations change, life will change. When life changes, close relations will change. When an individual has dementia, his/her life will be different in several ways. The present is characterized by uncertainty. A new situation has emerged, changing daily life in different ways. The future is “blurry”, and one does not know what to expect or count on, which is not exceptional for PWD. Others experiencing diseases with serious repercussions on their lives, for instance a severe stroke, might describe the same uncertainty about the future. What makes it particularly challenging for many PWD is that there will be parts of their lives that they no longer will remember. The continuity between past, present, and future, the “life line,” could be understood as a chain at risk of breaking. How social relations face the changes and adapt to them, can be essential for the PWD's experience. When PWD are no longer capable of maintaining important aspects to live a meaningful life, others might help them do so. Social relations might ‘patch up' the gaps by reminding the PWD and maintaining essential aspects from the past, thereby strengthening the chain. The perspective of the life story is an important aspect of a person-centred approach in dementia care by taking into account that the person has been and still is a part of a social context [27,28,29].

Dementia will change the cognitive capacity and often the physical capability and naturally lead to a decreased ability to perform activities and to participate in different ways. These changes in capabilities often cause changes in the way the surroundings relate to or count on the PWD. PWD might feel stigmatized [30 ]and are not able to distance themselves from the changes that are occurring. They live with and within the changes and might experience being different in their own and others' eyes. Living with dementia could be considered as a tremendous stress factor in life. The person struggles for a sense of coherence to cope with stress. According to Antonovsky, the sense of coherence consists of three elements: (1) comprehensibility, including predictability and understanding; (2) manageability, including skills and the ability to manage; and (3) meaningfulness, including a belief that things in life are interesting, worthwhile, and that there are good reasons and purposes for things to happen [25,31]. Additionally, Antonovsky emphasizes the element of meaningfulness as the most important aspect [25]. Our findings show that other persons have an essential impact on the experience of meaning for PWD. Therefore, the changes due to dementia, social relations, and the meaning of life are intertwined aspects. The findings are in accord with the theory of van Manen, highlighting that meaningfulness and the grounds for living are found within the experience of relations with others [18,31]. Both van Manen and Antonovsky underscore that meaningfulness in life may influence how a person addresses stress. Many PWD postpone telling others about their disease because of the stress and feelings they experience when they receive the diagnosis of dementia. However, one of the most recently published articles highlights the importance of openness and telling others about the diagnosis, which might give hope for a more transparent society [32].

Studies have shown that the numbers of social connections are less important than how the person experiences the quality of the relationships [6,33,34]. Therefore, one has to be aware of the fact that not every relation is a good relation. Good relationships could be a buffer against symptoms of anxiety and depression. Poor relationships might have the opposite effect. Relational meaningfulness might be a stabilizer, shaping continuity and protecting against expressions such as agitation [35]. Several studies emphasized the aspect of being with others with dementia, which could be an expression of equality, comfort or safety. When they are with others with dementia, PWD are not supposed to be more or perform more than they are capable of doing. PWD feel accepted as they are and are listened to and understood.

Family and healthcare personnel have to be aware of their important roles as supportive persons, enabling PWD to continue living a meaningful life. Understanding and accepting the cognitive changes in a family member or a friend suffering from dementia could be difficult and is a continuous process along with the progression of the disease. There is a need for information, education and counselling of family and friends, as well as health personnel. Emancipation and person centeredness should be the key concepts guiding the care provided to sustain the PWD's feelings of still being involved in their own life in the present and also in the future.

We have performed a systematic meta-synthesis with transparent descriptions of the selection process for the included articles. However, we acknowledge that a completed overview is not attainable, despite our approaches. The value of both individual reviewers and the use of pairs of researchers to evaluate the studies has to be accredited.

This systematic meta-synthesis shows that relations with others are important in the lives of PWD. The three categories revealed from the 63 articles, change in life, change in relations, and maintenance of meaningful aspects in life, are intertwined and essential for sustaining the lifeline for PWD. The comprehensive meaning is understood as the expression: Living a meaningful life in relational changes.

We thank university librarian Marit Gjone Sandsleth for providing essential help and advice on the computer-aided search, and Professor Emeritus Knut Engedal for his valuable comments on the preparation of the manuscript.

The authors declare that they have no conflicts of interest.