Experiences related to quality of life in people with dementia living in institutional settings

Abstract

Introduction

Within dementia care, there remains a general lack of coherence in evidence-based knowledge on issues of importance for subjective experiences of quality of life in people with dementia. The aim of the meta-aggregation was to investigate experiences related to quality of life in people with dementia living in institutional settings.

Method

A meta-aggregation inspired by the Joanna Briggs Institute was undertaken. A systematic search was conducted in four databases and additional studies were found in the reference lists of the included studies. Only studies in English, Danish, Swedish, and Norwegian were considered, with publication dates from 2007 to 2018.

Findings

Ten original qualitative studies were included. Using critical appraisal, methodological quality was assessed. We extracted five main categories: acceptance and adaptation; autonomy; personhood; social connectedness; and activities.

Conclusion

Significant findings for future occupational therapy in dementia care concerned the importance of coming to terms with the illness and life situation, while being able to experience feelings of autonomy, independence, and personhood. Meaningful social relationships and activities, individualized flexible routines and regulations, and adjusted physical environments with room for privacy were also prioritized in order to achieve high quality of life.

Keywords

Autonomy social connectedness meaningful activities subjective perspective occupational therapy

Introduction

Dementia is defined as ‘a syndrome in which there is deterioration in memory, thinking, behaviour, and the ability to perform everyday activities’ and is as such one of the major causes of disability and dependency among older people worldwide (World Health Organization, 2017). At a global level, around 50 million people have dementia. The total number of people with dementia is projected to reach 82 million in 2030 and 152 million in 2050 (World Health Organization, 2017). Dementia often involves symptoms such as declining cognition, emotional control, and social behaviour, and has become a matter of growing concern on a worldwide level (Higgs and Gilleard, 2016; Mitchell and Agnelli, 2015). Approximately 35,000 Danes have been diagnosed with dementia. However, the Danish Dementia Research Centre estimates that approximately 89,000 Danish people are currently living with dementia (Danish Dementia Research Centre, 2018). Today, 42% of residents in Danish institutional settings such as nursing homes are diagnosed with dementia. However, the total number may even be higher as not all residents living with dementia have been diagnosed (Danish Health Authority, 2016).

In line with the global demographic shift, especially in western countries, the percentage of older citizens in populations is rising, and it is to be expected that the number of people with dementia in need of sheltered housing will rise. Accordingly, local politicians and health services around the world are engaging in innovative processes to develop new housing facilities, for example dementia villages, in order to meet the expectations of up-to-date accommodation and participation in meaningful activities. Future expectations also generate demands for improvements in the form of, for example, updated health professional knowledge and competences within occupational therapy, in order to make use of these new living conditions and support the quality of the residents’ everyday lives (Ministry of Health, 2017). In the broad definition proposed by The World Health Organization, quality of life is defined as people’s perceptions of their position in life in the context of their particular culture and value systems and in relation to their personal goals, expectations, standards, and concerns (World Health Organization, 2019). Recent reviews within dementia research are in agreement that dementia-specific quality of life also reflects the subjective evaluation of a person’s life perspectives (Kwasky et al., 2010; O’Rourke et al., 2015). Therefore, perceived quality of life is highly subjective, multi-dimensional and a key concept in successful dementia care (Stewart-Archer et al., 2016). Although knowledge within the field of dementia care is growing, the Danish Health Authority stated in a national report from 2016 that there remains a general lack of coherence in evidence-based knowledge and the dissemination of content, quality, and outcomes of social and health services and approaches for people with dementia (Danish Health Authority, 2016). At the same time, the services are expected to be founded on the newest and best available evidence on what may contribute to wellbeing, quality of life, and dignity in the everyday life of the person with dementia (Ministry of Health, 2017). Thus, as the growing population of people with dementia requires support to achieve good quality of life, there is a need for further improvements and developments in occupational therapy and other healthcare interventions based on research into the subjective experiences of quality of life in people with dementia living in institutional settings.

Dementia affects each person in a different way. Among other things, affects can vary depending on the impact of the disease and the person’s personality before becoming ill. The differences entail wide variations in the care and support needed by the individual person with dementia, and the care and support given by formal and informal carers is often of crucial importance for the quality of the everyday lives of these people. Person-centred care has become synonymous with a high quality of care in dementia (Bosco et al., 2019). The theory of person-centred care, developed by Professor Thomas Kitwood (1937–1998), provided the groundwork for an approach to healthcare that makes use of interactive approaches and humanistic ethics more than medical interventions, aiming to support and strengthen the feeling of sustained personhood (Kitwood, 1997, 1998). In Kitwood’s theoretical approach it is repeatedly stressed that dementia varies from person to person and that the process of the disease is affected by the social and psychological environment surrounding the individual. Kitwood based his research mainly on persons with moderate to severe dementia living in institutional care. The understanding of how psychosocial environmental factors affect this group was mainly generated from the perspectives of close relatives and health professionals (Mitchell and Agnelli, 2015). In addition, in Kitwood’s theoretical framework, personhood is seen as a state endorsed by others and not a state maintained and shaped by people with dementia themselves (Tolhurst et al., 2017). Conceptual frameworks of client-centred occupational therapy and successive models of person-centred care have been developed among professionals aiming to expand on Kitwood’s framework emphasising the person’s active agency and dynamic interactions with the social environment. Despite these advances, people with dementia still report feeling like passive recipients (Bosco et al., 2019). These findings stress the importance of targeting factors that matter to people today; the concepts of quality of life and personhood need to include the person’s subjective experiences and perspectives to ensure the relevance and value of the person-centred dementia research and care offered.

In 2015, O’Rourke et al. undertook a systematic review and meta-synthesis of primary qualitative studies on factors that affect quality of life from the perspective of people with dementia. They based their article on 11 qualitative studies published from 1975 to 2012. The participants included 345 people with mild, moderate, and severe dementia living in long-term care or community-based settings in Europe, the United States of America (USA), Canada, Australia, and Japan. The study found that four factors, and the experience of connectedness or disconnectedness within each factor, influenced quality of life according to the participants. These factors, along with the concepts that represent connectedness and disconnectedness, were relationships, agency in life today, wellness perspective, and sense of place. Moreover, experiences of happiness or sadness were key outcomes of good and poor quality of life, respectively. The authors concluded that research where a conceptual foundation derived from the subjective perspectives of people with dementia is used may uncover innovative ways to support experiences of best possible quality of life (O’Rourke et al., 2015). As this systematic review embraces people with dementia in all stages and across settings, there is a need for an updated and more focused investigation of quality of life from a subjective perspective of people with dementia in need of sheltered living, to guide occupational therapists and other healthcare professionals in their daily practice.

Aim

The aim of the review was to investigate experiences related to quality of life in people with dementia living in institutional settings.

Methods

Systematic reviews of qualitative research may contribute to informing the implementation of evidence-based healthcare (Lockwood et al., 2015). The design of this meta-aggregation was inspired by the Joanna Briggs Institute methodology of meta-aggregation to allow for a systematic synthesis of qualitative evidence of the experiences related to quality of life in people with dementia living in institutional settings. Meta-aggregation creates syntheses from findings of existing studies, and even though the methods of meta-aggregation reflect the processes of a quantitative review, it maintains the characteristics of qualitative research traditions seeking deeper understandings (Hannes and Lockwood, 2011; Lockwood et al., 2015). Hence, the qualitative research findings comprise knowledge that may be expressed in concepts of meanings, experiences, and values, and thereby potentially improve the quality and relevance of healthcare practice, as meta-aggregation aims to generate generalizable statements in the form of recommendations to guide practitioners and policy makers (Lockwood et al., 2015).

Search strategy

A preliminary search was conducted in the autumn of 2017, using PubMed, CINAHL, and Google Scholar databases to identify the presence of existing meta-aggregations on the topic. No existing meta-aggregations of relevant qualitative studies were found. Therefore, a systematic search was conducted in PubMed, CINAHL, Embase, and PsycINFO based on the aim of this study. A representation of the search process can be found in Figure 1. Additional studies were located by scrutinizing the reference lists of included full-text studies.

Figure 1.

PRISMA flow diagram of search process. Adapted from Moher et al. (2009).

Inclusion criteria

The search strategy was structured using the following keywords:

Dementia, Alzheimer’s disease, residents with dementia;

Patient perspectives, subjective perspective;

Quality of life;

Long-term care, nursing home, care home, institutionalized.

Studies were viewed as eligible if they were qualitative studies on experiences related to quality of life in people with dementia (residents), living in institutional settings and published in peer-reviewed journals. Study populations had to be diagnosed with dementia and living in an institutional setting. Only English, Danish, Swedish, and Norwegian studies were considered, with publication dates from January 2007 to December 2018. Older studies were excluded because of changes in dementia care, along with development in understandings of and attitudes to dementia and people with dementia. Studies with unsupported results, such as unclear themes or lack of informant quotations, were excluded (Hannes and Lockwood, 2011; Lockwood et al., 2015).

Study selection

The study search identified 969 records through the database search. After duplicate removal, all 754 records were screened at title level for suitability by the first author (HKK), resulting in 548 records being excluded. Then, 206 records were screened, resulting in an additional 187 records being excluded, leaving 19 full-text articles to be assessed for eligibility. The two authors (HKK, HP) independently assessed all full-text articles in their entirety, matching them against the inclusion criteria. Any disagreement was resolved by consensus; this process resulted in the exclusion of nine records. The meta-aggregation thus included 10 original qualitative studies of experiences related to quality of life in people with dementia living in institutional settings (see Figure 1).

Quality appraisal

In the meta-aggregative approach, as outlined by the Joanna Briggs Institute, critical appraisal is considered an essential part of the systematic review process (JBI, 2017; Munn et al., 2014). Hence, in order to appraise the methodological quality of the included studies, we used the 10-item standardized JBI Critical Appraisal Checklist for Qualitative Research (Hannes et al., 2010; JBI, 2017) and the included discussion of critical appraisal criteria (Lockwood et al., 2015). Dependability for each study is determined through the responses to five criteria on a checklist (for example the congruity between the research methodology and the methods used to collect data). The two authors (HKK, HP) independently appraised each article and then met to discuss their individual appraisal. Any disagreement was resolved through consensus. The outcome of the appraisal process is summarized in the findings section in Table 1.

Table 1.

Data extraction and quality assessment of included studies.

#	Author, year; title	Objective/aim	Study design/methods	Sample/participation	Context	Findings	Authors’ conclusion and recommendations for practice	Quality assessment
1	Bollig, Gjengedal and Rosland, 2016; Nothing to complain about? Residents’ and relatives’ views on a “good life” and ethical challenges in nursinghomes.	To explore what patients and their relatives perceive as a ‘good life’, and ethical challenges in nursing home care including end-of-life care.	A qualitative design using semi-structured, in-depth interviews and focus-group interviews.	Twenty-five nursing home residents and 18 relatives.	Nine nursing homes in Norway.	The main ethical challenges were: (a) acceptance and adaptation; (b) wellbeing and a good life; (c) autonomy and self-determination; and (d) lack of resources.The relationship with the staff was of utmost importance and was experienced as both rewarding and problematic. None of the residents in the study mentioned ethical challenges connected to end-of-life care.	Residents and relatives experience ethical challenges, mostly connected to ‘everyday ethical issues’.Implications for practice: daily routines in nursing homes should be adapted to the challenges and should strive to meet the residents’ wishes as far as possible in order to strengthen their feeling of autonomy and dignity.	High
2	Cahill and Diaz-Ponce, 2011;‘I hate having nobody here. I’d like to know where they all are’: Can qualitative research detect differences in quality of life among nursing home residents with different levels of cognitive impairment?	To examine if differences or similarities exist in perceptions of quality of life (QoL) amongst nursing home residents with different levels of cognitive impairments (CI).	A qualitative exploratory/descriptive design. Face-to-face interviews using a simple 15-item semi-structured interview schedule.	Sixty-one people with mild to severe dementia.	Three nursing homes in Ireland.	Four key themes of QoL were identified: (1) social contact; (2) attachment; (3) pleasurable activities; and (4) affect.Whilst some similarities existed between the groups, results showed emerging differences, particularly between those with a mild and severe CI. In particular, the narratives of those with a severe CI reflected an absence of social contact, a quest for human contact, and a lack of awareness of structured pleasurable activities. A large majority also reported feelings of loneliness, isolation, and a search for home.	Findings support the increasing evidence of the similarities between people with mild and moderate CI. For people with severe CI, some important differences were noted, for example a quest for human contact and feelings of isolation and loneliness.The social inclusion of persons with dementia in nursing homes, particularly of those with severe dementia, needs more consideration.The findings add to the increasing evidence that people with CI, including those with advanced dementia, are able to communicate their views and what is important to them.	Moderate
3	Clare et al., 2008;The experience of living with dementia in residential care: An interpretative phenomenological analysis.	To explore the subjective experience of life with dementia in residential care from the perspective of the person with dementia and to understand the psychological impact of being in this situation.	An exploratory qualitative study. Unstructured conversations between researchers and people with dementia living in residential care homes. The number of conversations recorded with each participant ranged from 1 to 8, giving a total of 307 transcripts.	Eighty-one people with dementia.	10 residential care homes in England and Wales.	The experience of living with dementia in residential care was fundamentally one of experiencing difficult and distressing emotions relating to loss, isolation, uncertainty, fear, and a sense of worthlessness. Participants generally tried to cope by accepting and making the best of things and affirming their past sense of self and identity, but some also expressed frustration and anger.	Participants were able to describe aspects of their situation and their emotional response to it, grounded in a strong retained sense of self and identity. The participants’ experiences emphasize the importance of improving the living situation of people with dementia in residential care settings.	High
4	Harmer and Orrell, 2008;What is meaningful activity for people with dementia living in care homes? A comparison of the views of older people with dementia, staff and family carers.	To explore concepts of meaningful activity, as defined by older people with dementia living in care homes, staff and family carers.	A qualitative study using focus-group interviews.	17 residents, 15 staff, and eight family carers.	Three care homes in England.	Four activity themes emerged: reminiscence, family and social, musical, and individual.There were also two related themes – ‘lack of meaningful activity’ and ‘what makes activity meaningful’. Residents found meaning in activities that addressed their psychological and social needs, which related to the quality of the experience of an activity rather than specific types of activities. In contrast, staff and family carers viewed activities that maintained physical abilities as meaningful.	People with dementia, staff, and carers had differing views about what made activities meaningful. Organizational limitations and social beliefs limited the provision of meaningful activities for this population. The study also indicates areas for improving activity provision in care homes.	Moderate
5	Heggestad and Nortvedt, 2013;‘Like a prison without bars’: Dementia and experiences of dignity.	To investigate how life in Norwegian nursing homes may affect experiences of dignity among persons with dementia.	The study had a qualitative design and used a phenomenological and hermeneutic approach, based on participant observation and qualitative interviews.	15 persons with dementia.	Two nursing home units in Norway.	The residents feel that their freedom is restricted, and they describe feelings of homesickness. They also experience that they are not being seen and heard as individual autonomous persons. Lack of freedom, experiences of homesickness, and feelings of not being confirmed and respected as individual autonomous persons may be a threat to their personal dignity.	In order to protect and enforce the dignity of persons with dementia living in nursing homes, we should confirm them as whole and individual persons, and we should try to make the nursing homes less institutional and more home-like.	High
6	Milte et al., 2016; Quality in residential care from the perspective of people living with dementia: The importance of personhood.	To describe the meaning of quality residential care from the perspective of people with cognitive impairment and their family members.	Qualitative data collection via in-depth interviews and focus groups.	15 people with dementia or cognitive impairment and 26 family members.	Three residential aged care facilities in Australia.	The theme of supporting personhood was identified as the overarching concept to people with dementia and their family members, and as the foundation for quality care. For both groups, access to meaningful activities was identified as important to supporting personhood. Separate to this theme of personhood, family members also talked about the importance of a supportive physical environment in the care home, while for the people with dementia maintaining a connection with family was an important contributor to their experience of good quality residential care.	Supporting personhood was identified as a critical key concept underpinning quality residential aged care, from the perspective of both people with cognitive impairment and their family members.	Moderate
7	Mjørud et al., 2017;Living with dementia in a nursing home, as described by persons with dementia: A phenomenological hermeneutic study.	To investigate the personal experience of living in a nursing home over time from the perspective of the person with dementia and to learn what makes life better or worse in the nursing home.	A phenomenological, hermeneutic research design was applied using unstructured, face-to-face interviews and field observations.	12 persons with dementia. 10 women and two men.	Three nursing homes in Norway.	The analysis revealed four themes: ‘being in the nursing home is okay, but you must take things as they are’; ‘everything is gone’; ‘things that make it better and things that make it worse’; and ‘persons – for better or worse? Staff, family and co-residents’.	Persons with dementia are able to communicate their feelings and thoughts about their lives in the nursing home and can name several factors that impact their quality of life. They differentiate between members of the staff, and they prefer their primary nurse. They are content with life in general, but everyday life is boring and their sense of contentment is based on acceptance of certain facts of reality and their ability to adjust their expectations.	High
8	Moyle et al., 2015; Influencers on quality of life as reported by people living with dementia in long-term care: A descriptive exploratory approach.	To describe quality of life as reported by people living with dementia in long-term care in terms of the influencers of, as well as the strategies needed to improve, quality of life.	A descriptive, exploratory qualitative research design with a case study approach based on qualitative interviews.	Nine women and three men.	Four facilities in Australia.	Three themes emerged in relation to influences and strategies related to quality of life: (1) maintaining independence; (2) having something to do; and (3) the importance of social interaction.	The findings highlight the importance of understanding individual residents’ needs and consideration of the complexity of living in large group living situations, in particular concerning resident decision-making.	Moderate
9	Moyle et al., 2011; Factors influencing quality of life for people with dementia: A qualitative perspective.	To understand the factors that influence QoL for people living with dementia in long-term care (LTC), including an understanding of how they perceived they were valued.	A pragmatic, exploratory qualitative approach, situated in the interpretive paradigm based on semi-structured interviews.	32 older people with dementia.	Four facilities in Australia.	While these residents were either satisfied or dissatisfied with elements of their life, the factors influencing a positive QoL were related to their relationship with family and other people, and ‘things’, such as needing some control over their life and, more importantly, needing to contribute to their community. Participants reported feeling of little use and therefore of limited value to society.	This study proposes a need to understand how relationships might be maintained and strengthened following a move into LTC and highlights the importance of control and its influence on feeling valued.	High
10	Tak et al., 2015;Activity engagement: Perspectives from nursing home residents with dementia.	To describe types of current activity involvement and barriers to activities reported by nursing home residents with dementia.	A qualitative study utilizing a content analysis within an ethnographic framework and based in short, open-ended interviews and in-depth interviews.	37 residents with dementia.	Nursing homes in the USA.	The analysis showed that participants primarily depended on activities organized by their nursing homes. Few participants engaged in self-directed activities such as walking, visiting other residents and family members, and attending church services. Many residents felt they had limited opportunities and motivation for activities. They missed past hobbies greatly but could not continue them due to lack of accommodation and limitation in physical function. Environmental factors, along with a fixed activity schedule, further prevented them from engaging in activities.	Residents with dementia should be invited to participate in activity planning and have the necessary assistance and accommodation in order to engage in activities that matter to them. Based on the findings, a checklist for individualizing and evaluating activities for persons with dementia is detailed.	Moderate

Data extraction and synthesis

Data regarding study aim, design, methods, participants, context, findings, and authors’ conclusions and/or recommendations for practice were extracted independently by the two authors from the articles and were recorded using the data extraction tool designed for this review (see Table 1) (Lockwood et al., 2015). Data extraction and synthesis were accomplished in agreement with the four phases of meta-aggregation:

Gathering findings, themes, metaphors, and categories from all studies,

Aggregating findings based on similarity in meaning and placing them into relevant sub-categories,

Merging sub-categories into main categories,

Presenting results in a way that provides pragmatic lines of action (Hannes and Lockwood, 2011; Lockwood et al., 2015).

The two authors worked independently in the following way: the first author first extracted the synthesized findings. Then the second author critically reviewed the synthesized findings against the empirical data from the individual studies. In the following step, the authors discussed any possible differences and agreed on a final list of extracted findings. To ensure credibility and dependability, auditable trails were provided that enable the reader to understand how the synthesized findings were developed. Each synthesized finding, along with categories and sub-categories, is presented below.

Assessing the certainty of the synthesized findings

In order to establish confidence in the evidence produced in this meta-aggregation, a ranking of the final synthesized findings was developed based on the quality appraisal of each study and by use of the ConQual score. In collaboration, both authors developed a summary of findings including the major elements of the review and details of how the ConQual score was developed, presented in Table 2 (Munn et al., 2014).

Table 2.

ConQual summary of findings.

Synthesized findings	Dependability	Credibility	ConQual score	Comment
‘Acceptance and adaptation’ was extracted as a main category, with ‘acceptance and adaptation’ and ‘wellbeing and a good life’ as sub-categories across the included studies.	Three of the included studies were evaluated high and one study low.	Findings well accompanied by illustrations beyond reasonable doubt. High.	Moderate.	Four of the included studies (1, 3, 6, and 7) added to these findings.
‘Autonomy’ was extracted as another main category, with ‘autonomy and self-determination’, ‘restricted freedom’, and ‘independence’ as sub-categories across the included studies.	Five of the included studies were evaluated high and one study moderate.	Findings well accompanied by illustrations beyond reasonable doubt.High.	High.	Six of the included studies (1, 3, 6, 7, 8, and 9) added to these findings.
‘Personhood’ was extracted as a third main category, with ‘personhood’ and ‘worthlessness’ as sub-categories across the included studies.	Two of the included studies were evaluated high and one study low.	Findings well accompanied by illustrations beyond reasonable doubt.High.	Moderate.	Three of the included studies (1,3, and 6) added to these findings.
‘Social connectedness’ was extracted as the fourth main category, with ‘the importance of social relationships with family and other people’ and ‘loss and isolation’ as sub-categories across the included studies.	Two of the included studies were evaluated high, two moderate, and two low.	Findings well accompanied by illustrations beyond reasonable doubt.High.	Moderate.	Six of the included studies 2, 4, 6, 7, 8, and 9) added to these findings.
‘Activities’ was extracted as the fifth main category, with ‘activities entailing quality of life and wellbeing’, ‘dullness and boredom’, and ‘meaningful activities’ as sub-categories across the included studies.	One of the included studies was evaluated high, two moderate, and two low.	Findings well accompanied by illustrations beyond reasonable doubt.High.	Moderate.	Five of the included studies (2, 4, 6, 8, and 10) added to these findings.

The synthesized findings were assessed using the ConQual approach to determine their level of confidence, on a scale from high to very low based on the level of dependability and credibility of the primary studies from which the synthesized findings were extracted. Dependability of each study is established through assessments from the JBI Critical Appraisal Checklist for Qualitative Research (Hannes et al., 2010; JBI, 2017). The credibility of each study finding is established through determining the congruency between the study author’s interpretation and the accompanying data. The ConQual score is downgraded in consecutive order, from a starting point of high. The credibility of the synthesized findings is determined as high if the synthesized findings are unequivocal; as moderate if they are a mix of unequivocal/equivocal; as low if they are a mix of plausible/unsupported findings; and as very low if they are based on unsupported findings (see Table 2).

Findings

By using the set of critical appraisal questions proposed by Munn et al. (2014) to establish dependability, five studies were assessed as of high methodological quality (Bollig et al., 2016; Clare et al., 2008; Heggestad and Nortvedt, 2013; Mjørud et al., 2017; Moyle et al., 2011) and five studies as of moderate quality (Cahill and Diaz-Ponce, 2011; Harmer and Orrell, 2008; Milte et al., 2016; Moyle et al., 2015; Tak et al., 2015). The downgrading to moderate quality concerned a lack of explicit stated philosophical perspective and/or research methodology, lack of locating the researcher culturally or theoretically, and lack of discussion concerning the influence of the researcher on the research.

Study characteristics

The study characteristics of the 10 studies are summarized in Table 1. Of the 10 studies, six were conducted in nursing homes in Europe (for example Norway, Ireland, and the United Kingdom), three in Australia, and one in the USA. All studies included people with dementia, and three studies also included family members. Two hundred and thirty-nine people with dementia took part in the included studies. Five studies included a total of 104 participants with mild to severe dementia, but did not provide further information on how the participants distributed themselves across the severity of the disease (Bollig et al., 2016; Harmer and Orrell, 2008; Heggestad and Nortvedt, 2013; Milte et al., 2016; Moyle et al., 2011). Five other studies included 165 participants who were evaluated by the Mini-Mental State Examination (MMSE) or Clinical Dementia Rating Scale (CDR) to have moderate or severe dementia (Cahill and Diaz-Ponce, 2011; Harmer and Orrell, 2008; Mjørud et al., 2017; Moyle et al., 2015; Tak et al., 2015).

Data collection and analysis for most studies was based on interview data, described as semi-structured and focus-group interviews with thematic analysis or coding. Other methods were described as unstructured conversation, in-depth interviews, and observations.

Qualitative synthesis

We extracted five themes and 12 sub-themes across the 10 studies. The synthesis is shown in Table 3 below. In the following sections, key findings within each of the synthesized themes and sub-themes are presented.

Table 3.

Synthesized findings, categories, and meaning units.

Synthesised findings across the studies (themes and sub-themes)	Synthesised categories across the studies	Categories within studies	Meaning units (selected examples)
Acceptance and adaptation- Acceptance and adaptation- Wellbeing and a good lifeAutonomy- Autonomy and self-determination- Restricted freedom- IndependencePersonhood- Personhood- WorthlessnessSocial connectedness- Relationships with family and others- Loss and isolationActivities- Quality of life and wellbeing- Dullness and boredom- Meaningful activities	Accept and AdaptationPersonhoodAutonomy	Acceptance and adaptationWellbeing and a good lifeAutonomy and self-determinationLack of resources	‘I do what I am able to participate in life. You can participate in life and not just sit on your butt’‘You lose a big part of your freedom. For example, you cannot just take your bag and tell them that you will go shopping’
	Social connectednessActivities	Social contactAttachmentPleasurable activitiesAffect	‘I hate having nobody here … I’d like to know where they all are’‘I’ve nothing here, none of the things I want around me. I have no dog’
	AutonomyWorthlessnessAccept and adaptationPersonhood	Nothing’s right nowI’m alright, I’ll manageI still am somebodyIt drives me mad	‘It isn’t a very happy life’‘I’m thankful for what I can do’
	ActivitiesSocial connectedness	Reminiscence activitiesFamily and social activitiesMusical activitiesIndividual activitiesLack of meaningful activitiesWhat makes activities meaningful	‘I must admit I’m enjoying this conversation … it’s about old times and what you did’‘Sometimes time drags, especially when there’s nothing interesting to you as a person’
	Autonomy	To be seen and heardCaptivityHomesickness	‘I feel like a prisoner. I have no freedom’‘Everybody wants to stay in his or her home. I’m a grownup; I’m 93 years old’
	PersonhoodActivitiesSocial connectedness	Good quality care supports personhoodGood quality care maintains connection with family	‘No one likes to be sitting around with no say in what they doing’‘And a place that welcomes family in’
	Accept and adaptationAutonomySocial connectedness	Being in a nursing home is okay, but you must take things as they areEverything is goneThings that make it better and things that make it worsePersons – for better or worse? Staff, family and co-residents	‘I live here, I will be content here’ ‘I get the feeling I am just a brat she has to take care of’
	AutonomyActivitiesSocial connectedness	Quality of life as maintaining independenceHaving something to doThe importance of social interaction	‘Well you fit in, you have to fit in with their daily…, [and] each day is a different day for doing things’‘I don’t mind staying here. As long as there is somebody else around. I don’t want to be left in the building by myself’
	Social connectednessAutonomyWorthlessness	Family influences on quality of lifePeople influences on quality of lifeThings that influence quality of life	‘If my family walked in here that would be one of the happiest days of my life’‘We’re not allowed out of here in case we get lost’
	Activities	Self-directed activitiesLimited opportunities and motivation for activities	‘I play bingo, but I’m not crazy about that, but I do play just to mix and mingle’‘I wish we had something more interesting to do, at least once or twice a week ….We don’t have any excitement’

Acceptance and adaptation

‘Acceptance and adaptation’ was extracted as a main category, with ‘acceptance and adaptation’ and ‘wellbeing and a good life’ as sub-categories across the included studies.

Acceptance and adaptation

The residents spoke of processes of accepting their new life situations and seeing death as a part of life. However, these experiences of transition were troublesome and challenged their ability to preserve dignity (Bollig et al., 2016). Some residents focused on ways of coping with difficult situations in their everyday life and stressed their efforts at acceptance, involving coming to terms with getting older, valuing social relations and friendships, making the best of things, and trying to let go of worry and anxiety (Bollig et al., 2016; Cahill and Diaz-Ponce, 2011; Clare et al., 2008; Moyle et al., 2011). In the interviews, the residents often focused more on their current abilities than on what they could no longer do (Clare et al., 2008; Moyle et al., 2015). There was talk of how reflections on current abilities led to gratitude for the things they still could do and willpower to continue to be actively engaged in their everyday life, as well as maintaining hope for the future (Clare et al., 2008; Milte et al., 2016; Mjørud et al., 2017).

However, it was described that in some nursing homes the residents had to behave in certain ways and had to accept how things were done, for instance early bedtimes due to staff shortage (Bollig et al., 2016; Milte et al., 2016; Mjørud et al., 2017; Moyle et al., 2011). Not feeling at home and not regarding the nursing home as a real home led to feelings of missing their old homes (Cahill and Diaz-Ponce, 2011; Mjørud et al., 2017), and many respondents believed that living in the nursing home was temporary (Cahill and Diaz-Ponce, 2011). Some residents reported how they tried to make the best of their situation, accepting that they had to follow the routines set by staff at the nursing home, and they described how people, belongings, and activities could influence their life in the nursing home (Mjørud et al., 2017).

Wellbeing and a good life

As most of the residents were dependent on help for most of their daily activities, like dressing and bathing, the assurance that they would get support if they needed it gave them a feeling of safety (Mjørud et al., 2017; Tak et al., 2015). In addition, the presence of qualified health professionals gave them comfort, as they knew they would get help when or if they became ill (Mjørud et al., 2017). In most studies, it was stressed that participating in meaningful activities and maintaining the connection with family were seen as important factors to support wellbeing (Bollig et al., 2016; Cahill and Diaz-Ponce, 2011; Clare et al., 2008; Harmer and Orrell, 2008; Milte et al., 2016; Moyle et al., 2011, 2015).

Autonomy

‘Autonomy’ was extracted as another main category, with ‘autonomy and self-determination’, ‘restricted freedom’, and ‘independence’ as sub-categories across the included studies.

Autonomy and self-determination

The residents stated the importance of feeling respected, in particular by the healthcare professionals, in order to be able to practise self-determination (Bollig et al., 2016; Milte et al., 2016). When they experienced lack of having been consulted or informed, they felt unable to exercise control over their own life situation (Bollig et al., 2016; Clare et al., 2008; Heggestad and Nortvedt, 2013; Milte et al., 2016; Mjørud et al., 2017; Moyle et al., 2011, 2015).

Often, the residents were able to articulate that they wanted to make their own decisions in their everyday lives (Bollig et al., 2016; Moyle et al., 2011, 2015). Nevertheless, several of the participants described feelings of not having much to decide on and that they did not feel autonomous or self-determinant (Bollig et al., 2016; Clare et al., 2008; Heggestad and Nortvedt, 2013; Moyle et al., 2011, 2015).

Additionally, if they did not feel that they were offered opportunities to make decisions in their everyday lives, and when the staff did not seem to listen to them, they felt that they were not perceived as individual autonomous persons and experienced this as a challenge to their notion of sense of self and dignity (Bollig et al., 2016; Heggestad and Nortvedt, 2013; Mjørud et al., 2017; Moyle et al., 2011). Conversely, having control over daily routines provided a valued sense of normality and freedom (Milte et al., 2016).

Restricted freedom

Several residents spoke of feelings of captivity and complained that they felt confined and in need of more independence (Milte et al., 2016). Some felt a longing for freedom and used the expression ‘living in a prison’ as a metaphor associated with institutionalization and homesickness (Heggestad and Nortvedt, 2013; Milte et al., 2016). The residents related their experiences of captivity to being dependent on the staff to get outdoors and to do what they wanted in the nursing home (Heggestad and Nortvedt, 2013; Milte et al., 2016; Moyle et al., 2011).

Walking inside and outside of the facility on a daily basis was an important individual activity to several residents (Heggestad and Nortvedt, 2013; Milte et al., 2016; Moyle et al., 2011; Tak et al., 2015). Residents described the enjoyment they used to feel from partaking in outside activities (Moyle et al., 2011), and the disconnection to the outdoor environment created a state where these residents felt excluded from opportunities to continue meaningful activities that could enhance their quality of life (Heggestad and Nortvedt, 2013; Milte et al., 2016; Moyle et al., 2011; Tak et al., 2015).

Independence

Independence was an important element of quality of life for most residents. While some residents felt comfortable with the daily routines of the nursing homes, others spoke about the value of having as much independence, autonomy, and flexibility in their everyday life as possible. For instance, being able to go outside when they wished was particularly valued (Clare et al., 2008; Heggestad and Nortvedt, 2013; Milte et al., 2016; Moyle et al., 2015).

Personhood

‘Personhood’ was extracted as a third main category, with ‘personhood’ and ‘worthlessness’ as sub-categories across the included studies.

Personhood

Findings in the included studies showed that not being labelled as a diagnosis or a behaviour, but to be seen as a fellow human being and to be engaged in social interactions, were fundamental for wellbeing and maintaining the feeling of dignity (Bollig et al., 2016; Heggestad and Nortvedt, 2013; Milte et al., 2016). Moreover, having one’s own personal space and control over that space was associated with respect and was highly valued (Heggestad and Nortvedt, 2013; Milte et al., 2016). Having a private room, and being able to enjoy some privacy and having this privacy respected, also helped many residents to feel at home (Cahill and Diaz-Ponce, 2011; Mjørud et al., 2017). For these reasons, residents valued the ability to have everyday choices in relation to having their own ideas taken into account and respected by the staff (Moyle et al., 2015).

Residents felt that talking to and about their family maintained connections with important current and past relationships, as looking back over one’s life and reliving past events could be a pleasurable experience and to some degree compensate for current losses (Cahill and Diaz-Ponce, 2011; Clare et al., 2008; Harmer and Orrell, 2008; Milte et al., 2016; Mjørud et al., 2017; Moyle et al., 2011; Tak et al., 2015). Meaningful conversations with family members also helped the residents to recall previous memories that reminded them of their existence in the world outside the nursing home and connected them with their community (Cahill and Diaz-Ponce, 2011; Milte et al., 2016; Moyle et al., 2011). However, when some residents talked about their past lives they emphasized the losses of family and home and also spoke of the loss of their self (Heggestad and Nortvedt, 2013; Mjørud et al., 2017).

The notion and experiences of accomplishing something meaningful, feeling of use, and therefore feeling of value to society, were considered very important (Clare et al., 2008; Milte et al., 2016; Moyle et al., 2011). Being able to make contributions to everyday life in the nursing home, for instance by cleaning, making their bed, helping the staff, having chores, and assisting other residents, were examples of this (Bollig et al., 2016; Milte et al., 2016). The experience of being able to contribute to small domestic tasks gave the residents a sense of normality or a continuation of their everyday lives prior to living in the nursing home (Milte et al., 2016). Having the opportunity and being supported to contribute to these activities was identified as an important part of a positive residential care experience (Milte et al., 2016; Moyle et al., 2015).

Feelings of being useful could also be gained through contributing to family life. For example, by providing advice and sharing experiences, and through attending or being included in family events (Milte et al., 2016).

Worthlessness

Findings from residents with moderate and severe dementia in particular were in some studies characterized by sufferings dominated by feelings of distress, uncertainty, loss, isolation, loneliness, fear, and worthlessness (Cahill and Diaz-Ponce, 2011; Clare et al., 2008; Mjørud et al., 2017).

Feelings of worthlessness, being of little value, and disempowerment could be rooted in experiences of being unable to contribute in useful ways and of other residents or staff acting inappropriately or implying that the residents’ views were less significant than others (Bollig et al., 2016; Clare et al., 2008; Milte et al., 2016; Mjørud et al., 2017; Moyle et al., 2011).

Social connectedness

‘Social connectedness’ was extracted as the fourth main category, with ‘the importance of social relationships with family and other people’ and ‘loss and isolation’ as sub-categories across the included studies.

Relationships with family and other people

Friends and especially the families of residents were important sources of meaning, enjoyment, and support for residents, and regular visits by family members stood out as important to the residents’ everyday lives (Bollig et al., 2016; Cahill and Diaz-Ponce, 2011; Clare et al., 2008; Harmer and Orrell, 2008; Milte et al., 2016; Moyle et al., 2011, 2015). Maintaining these relationships was seen to support the wellbeing of the individual resident by providing acceptance, social support, and connections with their lives prior to dementia and living in nursing homes (Bollig et al., 2016; Cahill and Diaz-Ponce, 2011; Clare et al., 2008; Harmer and Orrell, 2008; Milte et al., 2016; Moyle et al., 2011, 2015).

People within the nursing homes were important sources of company for most participants (Cahill and Diaz-Ponce, 2011; Mjørud et al., 2017). The staff appeared to play a significant role in some residents’ lives; for example, when family and friends no longer came to visit, residents looked to the staff to fulfil their needs for social relationships (Cahill and Diaz-Ponce, 2011; Mjørud et al., 2017; Moyle et al., 2011). Having a particular friend within the nursing home could make a great deal of difference. Other residents were often considered friendly, even if they were not well known, and feeling accepted by others seemed vital, signifying the importance of positive social contact (Bollig et al., 2016; Cahill and Diaz-Ponce, 2011; Clare et al., 2008).

Loss and isolation

Some residents perceived their days to be long and lonely as they spent lengthy periods without companionship or opportunities to engage in relationships (Moyle et al., 2011). Among other things, several residents believed that they did not receive enough help from the staff and had too little social contact with the staff (Bollig et al., 2016; Moyle et al., 2011; Tak et al., 2015).

Particular residents with severe dementia expressed feelings of loneliness and of feeling lost. Occasionally, these states of minds entailed extreme feelings of being abandoned by family and friends, resulting in a quest for human contact (Cahill and Diaz-Ponce, 2011; Clare et al., 2008; Mjørud et al., 2017).

Activities

‘Activities’ was extracted as the fifth main category, with ‘activities entailing quality of life and wellbeing’, ‘dullness and boredom’, and ‘meaningful activities’ as sub-categories across the included studies.

Quality of life and wellbeing

For the majority of residents, having something to do was essential for experiencing quality of life. Hence, participating in activities and communicating with others were often described as dimensions of a good everyday life and wellbeing (Bollig et al., 2016; Cahill and Diaz-Ponce, 2011; Harmer and Orrell, 2008; Milte et al., 2016; Moyle et al., 2011, 2015; Tak et al., 2015). Many residents relied on staff assistance in order to engage in activities (Mjørud et al., 2017; Tak et al., 2015). Moreover, residents had different preferences and needs in relation to the surrounding environment, for example in regard to the lighting and noise levels in activity rooms (Tak et al., 2015).

While residents were keen to keep doing as many activities as they could, they also expressed the understanding that as their dementia progressed they would be unable to keep the current level of activity engagement (Clare et al., 2008; Milte et al., 2016). There was a sense of grief and sadness associated with this awareness, in addition to frustration as they identified symptoms of the dementia that impacted on their abilities, such as memory problems and lack of energy (Clare et al., 2008; Harmer and Orrell, 2008; Milte et al., 2016).

Dullness and boredom

Even though the nursing homes had activity plans, some residents experienced most of the activities as boring and described that the days were dull and monotonous, with little to do and poor quality interactions, and that they felt restricted by the environment (Bollig et al., 2016; Cahill and Diaz-Ponce, 2011; Clare et al., 2008; Harmer and Orrell, 2008; Mjørud et al., 2017; Moyle et al., 2011; Tak et al., 2015). There were indications that they would rather be elsewhere, which impacted on their mood (Harmer and Orrell, 2008).

Major barriers to getting involved in activities included limited activity choices and impairment in functioning, together with lack of time in the schedule, resources, and transportation (Tak et al., 2015).

Meaningful activities

Provision of meaningful activities was an important aspect of supporting personhood (Heggestad and Nortvedt, 2013). It was significant to the residents that they were able to participate in activities, but more importantly, that they were able to continue to be who they were by participating in activities that were meaningful to them (Harmer and Orrell, 2008; Heggestad and Nortvedt, 2013). For the activities to be meaningful, they should be tailored to the individual person’s interests and preferences, rather than activities that were offered more as a diversion with no individual relevance or context (Harmer and Orrell, 2008; Heggestad and Nortvedt, 2013). Main factors that made activities meaningful appeared to be based on the residents’ values and beliefs, and included reinforcing a sense of identity and sense of belonging by relating to their past roles, interests, and routines, or by providing opportunities to use their skills and brain, or to learn new skills and keep in touch with others (Bollig et al., 2016; Harmer and Orrell, 2008; Heggestad and Nortvedt, 2013). Other factors included feeling valued, being of use, being stimulated by interesting and enjoyable activities, and supporting the other residents to relax and pass the time (Harmer and Orrell, 2008; Heggestad and Nortvedt, 2013; Moyle et al., 2011; Tak et al., 2015).

Discussion and implications

This article presents a meta-aggregation of qualitative data from studies that have investigated experiences related to quality of life in people with dementia living in institutional settings. Five synthesized categories are described, showing that accept and adaptation, autonomy, personhood, social connectedness, and activities form key concepts of importance in the subjective experiences of quality of life, reflecting the participants’ evaluations of life perspectives and perceptions of a contextualized position in life.

The most significant findings concern the subjective experiences and perspectives on the importance of coming to terms with their illness and life situation, while being able to experience feelings of autonomy, independence, and personhood. The understanding of the world of experience from the perspective of people with dementia is deeply influenced by the theoretical work of Kitwood, but also more current explanatory models of experiencing the world with dementia, which highlight psychosocial aspects and approaches (Zweijsen et al., 2016). Our findings, based on subjective experiences, emphasize the importance of feeling respected and being seen as a fellow human being, in particular by healthcare professionals, in order to be able to practise self-determination. The ability to have everyday choices in relation to having their own ideas taken into account by the staff was highly valued by participants. Also, the notions and experiences of accomplishing something meaningful, feeling of use, and therefore being of value to society, were considered very important. Apart from feeling useful in the nursing home, this could also be achieved by contributing to family life and being included in family events. Positive relationships were important sources of meaning and enjoyment, along with connections to their life prior to dementia and living in nursing homes. Moreover, freedom to get around on one’s own and to have and be in control of one’s own personal space was associated with respect and was greatly appreciated. These findings are in line with other current studies in broader populations of people with dementia (Martyr et al., 2018; O’Rourke et al., 2015; Stewart-Archer et al., 2016), indicating that core values in personal perceptions of quality of life may be long-standing, even though adaptations to functioning, ageing and living conditions, and behaviour patterns may undergo changes due to the dementia.

The growing populations of people with dementia living in institutional settings who may require support to achieve high quality of life accentuate the importance of gaining a deeper insight into subjective perspectives. The main findings of this meta-aggregation are in agreement with O’Rourke et al. (2015), who also suggested that interactions between experiences of impairment, perceived needs, and support received, together with the ability to exercise agency, affect perceptions of quality of life. The findings indicate the importance of sustaining feelings of autonomy and independence, and personhood should therefore be of high priority in dementia care. Kitwood stated that inner senses of security and stability gradually vanish in people with dementia, leaving the environment to support a sense of personhood (Higgs and Gilleard, 2016; Kitwood, 1997). Kitwood made personhood central to his approach in dementia care and argued that it should be conceptualized broadly, while relationships and moral solidarity were included as foundational principles. In view of that, Higgs and Gilleard discussed Kitwood’s conceptualization together with other perceptions of personhood and related concepts, and argued that thinking about personhood depended on ideas of agency and autonomy, consciousness and memory, self-hood, and personal identity (Higgs and Gilleard, 2016). They acknowledged that people with dementia are objects of moral concern and at the same time also recognized that many people with dementia experience declined self-awareness, reflexivity, and narrative unity, impeding their ability to constitute metaphysical personhood, and that these deficits increase over time. Consequently, they argue that Kitwood’s approach failed to distinguish between maintaining a moral standing of persons with dementia and preserving their capabilities of performing personhood. As they saw Kitwood’s approach to place undue burdens of responsibility upon proxies and health professionals, Higgs and Gilleard advocated that dementia care requires no moral or metaphysical interpretations of the ‘personhood’ of residents, but can be grounded in recognition of common humanity and due care (Higgs and Gilleard, 2016).

Still, the findings concern people in vulnerable life situations and may be understood in the perspective of social justice, emphasizing that people with dementia are to be treated with respect and enabled to make choices and shared decision-making. In this context, occupational justice offers a special perspective underlining fair opportunities and resources to participate in occupations that support health and wellbeing, development, and inclusion. The knowledge on the dialectic relationship between these concepts drawn from the subjective experiences of people with dementia is of particular importance for occupational therapists, as all people have the right to participate and to be supported in participating to their full potential in desired and valued occupations (Du Toit et al., 2019; Hocking, 2017).

The knowledge derived on the concept of meaningful activities deepens the understanding of which activities may influence quality of life from the perspectives of residents, and how. In this meta-aggregation, activities were considered meaningful when based on individual values and beliefs and included reinforcement of a sense of identity and of belonging by relating to past roles, interests, and routines, or the possibility to learn new skills and keep in touch with others. These findings are in line with other studies, emphasizing the importance of engagement in activities that emerge and unfold in collaboration with others for residents in institutional settings (Du Toit et al., 2019; Harnett, 2010; Mondaca et al., 2018). The findings also showed that being engaged in activities was significant to residents when the activities created opportunities to feel valued and useful and when they were stimulating, interesting, and enjoyable. Individualized everyday activities, such as housekeeping and outdoor activities, are known to provide meaningful engagement during the day because they often reflect interests, lifestyles, and routines, which may reaffirm the person’s sense of self and promote feelings of connectedness and coherence (Edvardsson et al., 2014; Han et al., 2016). Moreover, taking part in everyday activities was seen to facilitate experiences of at-homeness, which this meta-aggregation also highlights as important for the quality of life of residents. Hence, in partnership with the person with dementia, occupational therapists can identify the person’s resources and facilitate strategies for modifying occupational forms of meaningful activities to optimize the resident’s participation (Du Toit et al., 2019). However, people with moderate to severe dementia may be dependent on their environment to be involved in these activities as they often lose the ability to initiate and engage in the activities themselves (Smit et al., 2016). To support health and wellbeing, a dynamic balance between doing, being, becoming, and belonging may be achieved through co-occupation that involves occupational engagement, requiring the participation of two or more people. People with dementia may benefit in shared doing because engagement in co-occupation helps to maintain the residents’ sense of agency. In agreement with the recent critical interpretive synthesis by Du Toit et al. (2019), this meta-aggregation reinforces the need for occupational therapists to gain a deeper insight into the perceptions of people with dementia on meaningful activities, and improve the possibilities to support engagement in everyday lives that maintains or improves quality of life of residents, along with supporting the residents’ senses of belonging and connectedness. Moreover, the findings point to the significance of paying attention to the residents’ notions of life stories and reflections on future life.

This meta-aggregation, which provides a deeper insight into quality of life from the perspectives of people with dementia living in institutional settings, may inspire and inform future research, interventions, and policy changes.

Limitations

Even though the review methods were designed to be as comprehensive as possible, database searches may still fail to identify all relevant studies as we were unable to extend the search to include articles written in languages other than English. This may have limited the scope of our findings. The included studies were published between 2008 and 2017, and conducted in nursing homes in Europe, the USA, and Australia, and thereby rooted in western institutionalized healthcare services. Therefore, the findings contribute updated and important knowledge on the residents’ subjective experiences and understandings of quality of life, with particular relevance for health professionals and relatives in these contexts.

The populations in the included studies were diagnosed with dementia and living in an institutional setting, and it is discussed that there may be considerable discrepancies between self-reported and proxy quality of life evaluations. Self-reported ratings are generally more positive than those provided by carers and proxies. Proxy quality of life ratings may overemphasize the person’s disability by focusing on direct consequences of dementia such as cognitive impairment, dependence, and communication problems, as well as including the proxy’s own emotions, feelings, and beliefs (Martyr et al., 2018; O’Rourke et al., 2015; Stewart-Archer et al., 2016), whereas self-reported accounts seem to reflect the person’s situated overall feelings of wellbeing based on subjective feelings and mood (Trigg et al., 2012).

In the literature search of this review, people diagnosed with dementia were the main focus. This may have excluded relevant information provided by people with other major cognitive disorders.

The small number of included articles demonstrates the limited availability of evidence, making the pooling and dissemination of the results all the more essential for guiding healthcare practice. It also provides evidence that further research is in demand.

Conclusion

Significant findings in this meta-aggregation concern the importance of coming to terms with the illness and life situation, while being able to experience feelings of autonomy, independence, and personhood, thus indicating the importance of these issues being of high priority in dementia care and rehabilitation. In addition to the value of empathic person-centred care and occupational therapy, the findings also point to the importance of meaningful social relationships and activities, individualized flexible routines and regulations, and adjusted physical environments with room for privacy, in order to achieve high quality of life for people with dementia living in institutionalized settings. Activities were considered meaningful when they were based on individual values and beliefs; when they reinforced a sense of identity and of belonging, relating to past roles, interests, and routines; or when they provided opportunities to learn new skills and keep in touch with others. Moreover, taking part in everyday activities was seen to facilitate experiences of at-homeness, which this meta-aggregation also accentuates as important for the quality of life of residents. However, people with moderate to severe dementia may be dependent on their environment to be involved in and facilitate these activities.

Key findings

Experiencing feelings of autonomy, independence, and personhood are of high priority.

Meaningful activities reinforce a sense of identity and belonging.

Taking part in everyday activities facilitates experiences of at-homeness.

What the study has added

Meaningful social relationships and activities, along with being able to experience feelings of autonomy, independence, and personhood, were all issues the residents considered of high priority in the subjective evaluations of life perspectives.

Footnotes

Research ethics

Ethics approval was not required for this study as the meta-aggregation is based on peer-reviewed published articles. Consent was not relevant or required.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and publication of this article.

Funding

The authors received no financial support for the research, authorship, and publication of this article.

Contributorship

Both authors researched literature and contributed to the analysis, interpretation, and discussion of the data. The first draft of the manuscript was written mainly by the first author. Both authors reviewed and edited the manuscript and approved the final version.

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Experiences related to quality of life in people with dementia living in institutional settings – A meta-aggregation

Abstract

Introduction

Method

Findings

Conclusion

Keywords

Introduction

Aim

Methods

Search strategy

Inclusion criteria

Study selection

Quality appraisal

Data extraction and synthesis

Assessing the certainty of the synthesized findings

Findings

Study characteristics

Qualitative synthesis

Acceptance and adaptation

Acceptance and adaptation

Wellbeing and a good life

Autonomy

Autonomy and self-determination

Restricted freedom

Independence

Personhood

Personhood

Worthlessness

Social connectedness

Relationships with family and other people

Loss and isolation

Activities

Quality of life and wellbeing

Dullness and boredom

Meaningful activities

Discussion and implications

Limitations

Conclusion

Key findings

What the study has added

Footnotes

Research ethics

Declaration of conflicting interests

Funding

Contributorship

References