A qualitative systematic review of experiences of persons with dementia regarding transition to long-term care

Abstract

Introduction

The current qualitative systematic review identified and examined critically the literature on how persons with dementia experience transitions to long-term care. Results are intended to help develop guidelines for future care and research.

Method

A search was conducted of OvidSP, SCOPUS, Web of Science, ProQuest, PsycINFO, CINAHL, AgeLine and Informit databases. In total, 4705 articles were reviewed (published 1954–2018). A textual narrative approach was used to synthesise the findings of the included articles.

Results

Seven articles met inclusion criteria (five using data collected from interviews with persons with dementia and two using reports from a proxy). Overall, the findings showed that transition to long-term care possesses varied meanings for persons with dementia, is often not the decision of the persons with dementia, and is a process throughout which social connections remain important.

Discussion

Accounts of the experiences of persons with dementia regarding transitions from community to long-term care show that they and their families should be supported: with respect to their individual contexts, to share the positives and negatives of the transition experiences, to make decisions together, and to maintain old and establish new social connections.

Keywords

admission communication dementia interaction long-term care qualitative residential care textual narrative synthesis transition

Introduction

Many persons with dementia face barriers to receiving care in their own homes. The increasingly popular ‘ageing-in-place’ model of care is thought to relieve pressures on hospitals and residential facilities, and is supported by the cultural belief in the Western world that remaining at home as one ages maintains independence and autonomy (Wiles, Leibing, Guberman, Reeve, & Allen, 2012). Yet, ageing-in-place is challenging for many persons with dementia, with concerns for safety, inadequate self-care, and heavy care load on informal care partners¹ among the perceived hurdles (Thoma-Lurken, Bleijlevens, Lexis, de Witte, & Hamers, 2018). In the face of these barriers, persons with dementia may require greater support as they age and seek to remain in their own homes (Stockwell-Smith, Moyle, & Kellett, 2019).

When provision of support in the home is no longer sufficient, many older adults transition from living at home to a long-term care (LTC) facility in order to access 24-hour professional assistance (Cepoiu-Martin, Tam-Tham, Patten, Maxwell, & Hogan, 2016; Toot, Swinson, Devine, Challis, & Orrell, 2017). Thus, although ageing-in-place often is seen as the ideal, multiple late life housing transitions are common or even inevitable, especially when a person has dementia. As such, there are urgent clinical and research imperatives to improve the quality of care provided to persons with dementia, and to consider how best to support persons with dementia across all stages of the care continuum, not only within formal care settings (i.e. in the home, hospital or residential LTC facility) but also in the ‘spaces between’ these settings (i.e. during moments of transition).

It is widely accepted that best outcomes are achieved when care for older adults is ‘person-centred’, where care is informed by knowledge and understanding of their unique needs and preferences (World Health Organization, 2017). However, providing person-centred care often becomes complicated when a person is living with dementia. The voices of older persons with dementia often are not represented in the literature due to perceived ‘vulnerability’ and the complexity and ethics of involving them in research (Carmody, Traynor, & Marchetti, 2015b). Fuelled by social stigma and stereotypes, persons with dementia often are assumed to be ‘unreliable narrators, unable to give a meaningful account of themselves or of their lived experience’ (Capstick et al., 2015, p. 10).

Recently, advocates and activists with dementia world-wide have spoken out about the negative impacts of this assumption (Bryden, 2016; Mitchell, 2018; Rohra, 2016; Swaffer, 2016). Specifically, they demand that the health and social care provided to persons with dementia be shaped by the accounts of persons with dementia themselves, akin to the popular mantra: ‘Nothing about us, without us.’

Therefore, attention to rich, first-hand accounts about how these transitions are experienced might provide important insights into understanding how best to support persons with dementia. In line with this perspective, the ‘Clinical Practice Guidelines and Principles of Care for People with Dementia’ (Guideline Adaptation Committee, 2016) cited as one priority area for further research:

Transitions in care (e.g. moving from services appropriate to the early stages of dementia to those for later stages; home to residential care). Little is known about the experience of the person with dementia, their carer(s) and families and how these transitions can best be supported. (p. 65)

Thus, the current review aims to address this priority area by synthesising the best available evidence exploring the experiences of persons with dementia regarding transition to LTC. Objectives of the review were to:

establish preliminary principles for support provided to persons with dementia and their families throughout transitions to LTC based on relevant literature; and

establish recommendations and priorities for future research efforts relating to care transitions.

Method

The current qualitative systematic review followed the ‘Preferred reporting items for systematic review and meta-analysis protocols’ framework (Moher et al., 2015) to ensure a robust search of the literature. Terms were altered as appropriate for reviewing qualitative² literature (e.g. ‘Risk of bias’ changed to ‘Appraising study quality’).

Eligibility criteria

Eligibility criteria were developed using the ‘SPIDER’ tool (Cooke, Smith, & Booth, 2012), a widely-adopted instrument for defining terms for qualitative studies. The components of the SPIDER tool comprise: sample (S), phenomenon of interest (Pi), design (D), evaluation (E) and research type (R).

Sample

Study participants were required to have dementia-related cognitive impairment. For this review, ‘dementia-related cognitive impairment’ refers to cognitive impairment arising from Alzheimer’s disease (AD), Lewy body disease, mixed dementia (i.e. AD plus vascular cognitive impairment), frontotemporal lobar degeneration (all variants) or dementia of unspecified type as diagnosed using the International Classification of Diseases (10th Edition; WHO, 1992). Studies in which participants presented with alternative causes of dementia or non-progressive cognitive or psychiatric impairments were excluded. Studies including both persons with and persons without dementia were included if results were reported separately for participants with dementia. Participants were not required to be English speakers.

Phenomenon of interest

The phenomenon of interest for this review is the permanent transition from home (i.e. in the community) to LTC. Studies using terms synonymous with ‘long term care’ (e.g. nursing homes, residential care, aged care homes, etc.) were included so long as they referred to group housing for older adults, with 24-hour on-site nursing and/or care staff. Studies reporting on multiple transitions for one person were included only if they were initially residing in the community and one of the transitions was a permanent move to LTC.

Design and evaluation

Studies were included if they adopted research methods such as interview, focus group, observation or other qualitative-related methods to explore outcomes in the form of participants’ views, experiences, opinions, attitudes and/or perceptions (or similar).

Research type

The review included qualitative studies only. Articles were not limited by date of publication. Peer-reviewed original research papers or published theses were eligible for review.

Search strategy

A comprehensive search was conducted on 7 March 2017 and updated on 5 September 2018. The following databases were searched: OvidSP databases (including Medline), SCOPUS, Web of Science, ProQuest (Health and Medicine), PsycINFO, CINAHL, AgeLine and Informit (Social Sciences and Health subsets only). We searched electronic databases using text words. Subject headings were searched as permitted within each database. The search was intended to retrieve articles addressing three main concepts: dementia AND long-term care AND transition (Table 1). Limits were set to include articles published in English language only. We conducted backward reference searching (searching reference lists) and forward reference searching (searching citation information) of all articles included in the final review.

Table 1.

Search grid.

	Concept
	Dementia	Long-term care	Transition
Subject headings (search as each database permits)	Dementia	homes for the agednursing homes skilled nursing facilitieslong-term careresidential care institutionslong term careelder carenursing home patientsaged care homesresidential and aged care	Patient admission
Text words	dementAlzheimer cognitiv* (decline* or impair* or deteriorat)memory (loss or decline or impair* or deteriorat*)senilesenility	geriatric (home* or facilit* or institution* or care) residential (home* or care or facilit)long-stay (facilit institution* or resident)long-term careLTClongterm carenursing home‘homes for the aged’nursing facilitLTCFRACFcare homerest home*aged care	transitionadmissionrelocationplacementresettl

Study records

Data management and selection process

Search results were collated using Endnote software, and duplicates were removed. Studies were selected for inclusion according to the SPIDER criteria defined above:

The first author (JAY) screened all citations by title and abstract. Any unclear decisions were discussed until all three authors (JAY, CL and JBO) agreed.

Full-text articles were reviewed in duplicate (by JAY and a second independent reviewer) according to the predetermined SPIDER criteria. Discrepancies were discussed until consensus was reached for all full-text articles (90% agreement initially, discrepancy for 3 of 31 articles).

Data collection process and data items

The first author (JAY) extracted all data. First, the aim(s), participant information, inquiry paradigm (as stated or indicated), methodology and method were extracted for each paper. Second, first-order constructs (direct quotes from participants) and second-order constructs (researchers’ interpretations, themes, insights, understandings, etc.) were extracted for each study (Hansen, Draborg, & Kristensen, 2011).

Appraising study quality

We used the Critical Appraisal Skills Programme (CASP) Qualitative Checklist (Critical Appraisal Skills Programme, 2017) as a framework for a critical narrative review of the quality of each study. This widely-used tool (e.g. Butler, Hall, & Copnell, 2016; Ho & Chiang, 2015) is comprised of 10 questions, addressing several key methodological and ethical aspects of research quality. Appraisal of study quality was not used to determine inclusion in this review, yet was used to inform recommendations to increase the quality of future research in this area.

Data synthesis

The first author conducted a textual narrative synthesis. Following the approach of Lucas, Baird, Arai, Law, and Roberts (2007), the studies first were sorted into methodologically or thematically homogenous groups. Next, narrative commentaries were constructed, describing the characteristics, context and findings of each paper. Finally, a narrative synthesis was constructed from comparison of and contrast between findings from papers within each subgroup.

Results

The initial search identified 11,313 citations, published between 1958 and 2018 (Figure 1). A small heterogenous group of papers met all eligibility criteria. Seven papers from five studies, published between the years of 1998 and 2013, were included: three grounded theory papers (from a single study), two ethnographies, one case study and one thematic analysis.

Figure 1.

PRISMA flow diagram.

The CASP Qualitative Checklist framed the consideration of the quality of each study (responses to questions 1–9 presented in Table 2). All seven papers clearly described the aims of their research, and a qualitative approach was deemed appropriate to meet all research aims. Consideration of the value of each individual study (question 10, ‘How valuable is the research?’) is embedded in the body of the results and discussion section of this paper.

Table 2.

Response to CASP Qualitative Checklist, questions 1–9.

		Self-report Subgroup (n=5)					Proxy-report subgroup (n=2)
		Aminzadeh et al. (2009)	Aminzadeh et al. (2010)	Aminzadeh et al. (2013)	Jaffe and Wellin (2008)	Thein et al. (2011)	Chatterji (1998)	Morgan et al. (2006)
1	Was there a clear statement of the aims of the research?	Y	Y	Y	Y	Y	Y	Y
2	Is a qualitative methodology appropriate?	Y	Y	Y	Y	Y	Y	Y
3	Was the research design appropriate to address the aims of the research?	Y	Y	Y	Y	?	N	N
4	Was the recruitment strategy appropriate to the aims of the research?	Y	Y	Y	Y	Y	Y	Y
5	Were the data collected in a way that addressed the research issue?	Y	Y	Y	Y	Y	N	N
6	Has the relationship between researcher and participants been adequately considered?	Y	Y	Y	Y	Y	Y	Y
7	Have ethical issues been taken into consideration?	Y	Y	Y	Y	Y	N	Y
8	Was the data analysis sufficiently rigorous?	N	N	N	Y	Y	N	Y
9	Is there a clear statement of findings?	Y	Y	Y	Y	Y	Y	Y

Note: CASP notation, Y: yes; N: no; ?: cannot tell.

CASP: Critical Appraisal Skills Programme.

When considering the collective value of this group of papers, we acknowledge the ongoing debate about the validity and value of qualitative synthesis:

… qualitative research is viewed to be as resistant to synthesis as are poems. Even assuming that qualitative research findings can and ought to be synthesized, the sheer diversity in the implementation and reporting of qualitative research poses challenges to synthesis. (Sandelowski & Barrosso, 2007, p. 7)

Thus, a textual narrative approach to synthesis was chosen for the current review. In adopting this approach, we aspired to preserve and to pay respect to the essential context and characteristics of each individual study. Narrative and tabular analysis of the included papers revealed two subgroups:

Self-report: Five studies presented understandings of the experiences of persons with dementia informed by interviews with persons with dementia (Table 3).

Proxy-report: Two studies presented understandings of the experiences of persons with dementia constructed through reports from other informants such as family and/or formal carer partners (Table 4).

Table 3.

Characteristics of included papers: Self-report.

Article; Country; Discipline	Participant(s)	Methodology	Data collection	Results
Aminzadeh et al. (2009)CanadaNursing	16 people with dementia, >65 years oldFamily caregivers	Grounded theory (Strauss & Corbin, 1998)	Interview with participants with dementia within two months prior to relocation	Four major themes identified. Relocation to LTC: 1. represented the ‘end of an era’2. symbolised inevitable age-related decline3. represented a change in lifestyle, becoming ‘more protected, dependent, structured and communal’ (p. 487) 4. presented a challenge to overcome
Aminzadeh et al. (2010) CanadaNursing	16 people with dementia, >65 years oldFamily caregivers	Grounded theory (Strauss & Corbin, 1998)	Interview with participants with dementia within two months prior to relocation	Three core themes identified:1. Home Sweet Home• ‘Home’ has ‘profound, multifaceted, and often interrelated meanings’ (p. 30) 2. Disruption of Sense of Hominess3. Home Support• Insufficient and not tailored to specific needs
Aminzadeh et al. (2013) CanadaNursing	16 people with dementia, >65 years oldFamily caregivers	Grounded theory (Strauss & Corbin, 1998)	Interview with participants with dementia at two and six months after relocation	Transition to LTC is a three-stage process: 1. Settle In• Meeting basic survival needs, creating a personal space, establishing routine and completing activities of daily living2. Fit In• Pursuing new relationships• Social integration3. Find Meaning In• Recreating a sense of home• ‘…reminiscing and longing for their lost homes’ (p. 233)
Jaffe and Wellin (2008) USASociology	A single resident with ‘mild’ dementia – ‘June Turner’	Ethnography	Interview with ‘June Turner’ and observation by researchers	A narrative of ‘June’: • awareness of cognitive impairment of fellow residents and subsequent distress• experience of stigma of dementia influencing housing decisions and care provision• ‘resistance and withdrawal’ (p. 128) fuelled by staff member assumptions of incompetence
Thein et al. (2011)UKPsychiatry	18 subjects (11 women, 7 men), >65 years old, diagnosis of dementia according to the ICD-10^a	Unspecified (thematic analysis approach to analysing interview data)	Pre- and post-move interviews with participants with dementia	Before the event (pre-move interview themes): • the realisation of own difficulties• hopes and fears about the home they were moving to• their role in preparation for the moveAfter the event (post-move interview themes): • acceptance of the situation• acceptance by others• the role of family• recall of negative experience

^aInternational Classification of Diseases (10th Edition; World Health Organisation (WHO), 1992).

Table 4.

Characteristics of included papers: Proxy-report.

Article	Participant(s)	Methodology	Data collection	Results
Chatterji (1998)NetherlandsSociology	Mr. Rijder (an older man with AD)Wife (Mrs. Rijder)Mr. and Mrs. Rijder’s sonThe author (ethnographer) Social workerNurseDoctorPsychologist	Ethnography	Document review (social worker’s report), observation (interactions), author reflections (pre-admission and post-admission history)	Narrative description of: • turbulent pathway to permanent LTC admission• use of deceit on admission• Mr. Rijder’s sense of abandonment• False teeth and clothing as symbols of loss of control and normalcy• Narrow construction of Mr. Rijder as ‘an AD patient’
Morgan et al. (2006) USASociology	Nellie (>85 years old, female, White, has dementia)Daughter (Annie) Case worker Social worker	Case study	Field notes and interviews with relatives and other professionals	Four key findings: 1. Importance of good person/environment fit2. Personal agency is challenged well before transition to residential care settings3. Constraint on agency emerges from several different sources4. Importance of temporal context and consideration of multi-party views

AD: Alzheimer’s disease.

Each subgroup is presented separately below, with individual study commentaries presented before an integrative synthesis.

Self-report subgroup

Aminzadeh and colleagues (2009, 2010, 2013)

Canadian-based researchers, Aminzadeh and colleagues published three papers (Aminzadeh, Dalziel, Molnar, & Garcia, 2009, 2010; Aminzadeh, Molnar, Dalziel, & Garcia, 2013) from a large study of ‘the meanings, decisions, contexts, processes, practices and quality of life outcomes of moving to a residential care facility’ (Aminzadeh et al., 2010, p. 30). Adopting Strauss and Corbin’s (1998) Grounded Theory approach, the researchers analysed and reported on interviews conducted with 16 persons with dementia. The first two of the three papers report on data from interviews within two months before the move, and the third reports on data from interviews at two and six months after the move. The authors assert that, despite evident ‘speech, language or communication difficulties’ (p. 488), all participants appeared to understand the interview questions and articulated their ‘feelings, perspectives and experiences’ (p. 489).

Aminzadeh et al. (2009) explored the symbolic meaning of ‘home’ and how the meaning changes in the context of imminent transition to residential care. For these participants, a move to residential care symbolised the ‘end of an era’, inevitable age-related decline, loss of independence to a place of ‘hospitality’ and ‘rest’, and a challenge that they felt they would be able to overcome (p. 490).

Aminzadeh et al. (2010) explored the meanings, functions and experiences of living at home. They found that 'home' could have multiple layers of meaning for persons with dementia (e.g. a ‘center of socialization’ (p. 30), a ‘repository of memories’ (p. 31) and a ‘locus of autonomy, control, choice and freedom’ (p. 31)), but that this meaning often changed when approaching a move to residential care.

Aminzadeh et al. (2013) identified adjustment needs and efforts of persons with dementia who had recently moved to residential care. Participants reported the need first to settle in, to complete activities of daily living. They expressed a desire to fit in socially, by both establishing new relationships and maintaining old ones. Finally, participants emphasised the need to find the meaning in the move, to establish a sense of self in a new environment. The authors suggest a sense of ‘comfort, connection and continuity associated with feeling at home’ is achieved only when all three needs are fulfilled (p. 234).

Jaffe and Wellin (2008)

US sociologists Jaffe and Wellin (2008) engaged in interviews with ‘June Turner’, a woman who had moved to a specialised residential care setting for persons living with dementia, termed ‘the Lake Home’. For almost two years, the researchers held weekly interviews with June. They observed her interactions and everyday activities, took field notes, accessed daily staff reports, and interviewed care staff and her legal guardian. The authors describe how June ‘was exceptionally lucid and candid with [them] in recounting her earlier life and her ongoing efforts to maintain autonomy and agency at Lake Home’ (p. 130). Jaffe and Wellin sought to present ‘a co-constructed narrative and interpretation’ (p. 129) of June’s experience of changes in her memory and functional abilities, and of her associated transition to residential care.

June’s narrative describes early ‘conflict, bargaining and negotiation’ (p. 131) between June and her attorney/legal guardian, ultimately leading to admission to the Lake Home. June struggles to maintain selfhood in the face of social isolation imposed by her new setting. June describes feelings of isolation, ‘When you can’t talk to people, it changes your life’ (p. 132). Jaffe and Wellin wrote of ‘June’s conscious, even passionate efforts to find a sense of place and friendship at Lake Home’ (p. 134). They identify barriers to June’s social engagement imposed by the variability in the cognitive abilities of co-residents and by the care providers’ negative assumptions about June’s cognitive status. The authors describe how these barriers contribute to June’s gradual decline and withdrawal from all social engagement.

Thein, D’Souza, and Sheehan (2011)

UK-based researchers, Thein et al. (2011) explored the subjective experiences of persons living with dementia as they moved to a care home. Eighteen participants with dementia were interviewed about their perceptions or experience of the move (once before the move and once after). Seven themes emerged from their analyses.

Before the event, participants described increasing awareness of their own difficulties. Many participants felt that their needs outweighed the support available to remain in their own home. They expressed hopes for company, safety and good care, as well as fears of losing independence and autonomy. Most participants also wanted to visit prospective homes. Participants emphasised the importance of their involvement in preparing for the move, particularly in critical decision-making. One 87-year-old woman described her exclusion from the decision-making process:

… I don’t like being pushed around and something decided for me. I like to be told what they are planning for… I mean if I had said I’m not going, what would they have done? I knew it was for my own benefit but it wasn’t discussed. (p. 14)

After the event, participants described the need to accept the situation and the desire to be accepted by others. They emphasised that new relationships and ongoing involvement from family helped them to ‘settle in’.

Synthesis: Self-report subgroup

The participants in these studies attributed varied and multiple meanings to their LTC transitions. A core finding reported in Aminzadeh et al.’s (2009) paper was that participants attributed multiple meanings to a transition (e.g. for one person with dementia, a transition may be both a positive and a negative experience), and that these meanings often varied from participant to participant (e.g. the meaning of transition often was different for each person). This finding was supported by Aminzadeh et al.’s (2010) discussion of changed meaning of home and Thein et al.’s (2011) discussion of the realisation that challenges to living at home meant that something needed to change.

In all five papers, the decision to move to LTC was the responsibility of someone other than the individual with dementia: family (Aminzadeh et al., 2009, 2010, 2013; Thein et al., 2011) or a legal guardian (Jaffe & Wellin, 2008). However, in two papers (Jaffe & Wellin, 2008; Thein et al., 2011), persons living with dementia reported a desire to be more involved in the decision-making process.

In three papers, persons living with dementia expressed a fear of losing independence and agency³ (Aminzadeh et al., 2009; Jaffe & Wellin, 2008; Thein et al., 2011). In two of these papers, participants described how such fears often conflicted with hopes of a positive experience: of hopes for safety (Thein et al., 2011) and for rest (Aminzadeh et al., 2009).

Across all five papers, participants emphasised the importance of social connection. Persons living with dementia desired close contact with family throughout the transition and desired new relationships with co-residents (Aminzadeh et al., 2013; Jaffe & Wellin, 2008; Thein et al., 2011). Participants identified barriers to social interaction imposed by personal factors such as hearing impairment (Thein et al., 2011) and environmental factors such as facility culture and co-resident cognitive impairment (Jaffe & Wellin, 2008).

Proxy-report subgroup

Chatterji (1998)

Sociologist Chatterji (1998) presents the transition of a man with AD, known as ‘Mr. Rijder’, to a Dutch ‘verpleeghuis’ (nursing home). Through document review, presentation of family and professional discourses surrounding his transition, and author reflections, this ethnography ‘seeks to describe the experiences of [Mr. Rijder] at the point of institutionalization…’ (p. 355).

Summarising the social worker’s case reports, Chatterji (1998) describes Mr. Rijder’s initial admission to the verpleeghuis as a temporary resident, with his stay both a trial of a new living arrangement and an opportunity for respite, enabling Mrs. Rijder to take a short trip away. The trial was deemed unsuccessful and ‘dramatic’ (p. 361) as Mr. Rijder once climbed onto the roof of the verpleeghuis. Chatterji (1998) describes the social worker’s pre-admission report, which reveals a tension in the care of Mr. Rijder, the implication that admission to permanent care represents a failure of the family, that it exposes the (poor) condition of the supportive family unit.

Chatterji (1998) then presents and interprets excerpts of dyadic and triadic interactions during the admission process. These interactions involve Mrs. Rijder, a social worker, the author (in her capacity as student social worker), Mr. Rijder’s son, a nurse and, occasionally, Mr. Rijder. Many interactions revolve around Mrs. Rijder’s deception of her husband, by bringing him to the verpleeghuis without informing him of her intention to admit him permanently, and around Mr. Rijder’s (negative) response to such deceit.

Chatterji (1998) concludes by presenting interactions among a doctor, nurse and social worker at a case conference. These interactions are said to reveal Mr. Rijder’s ‘file self’, reconstituting him ‘as a conclusion [of] “Senile Dementia Alzheimer’s Type”’ (p. 371). Set against the rich in-depth data presented earlier, this reconstitution reveals the ‘impersonality’ (p. 371) of the institutional setting.

Morgan, Eckert, Piggee, and Frankowski (2006)

Sociologist Morgan et al. (2006) described two women’s experiences of transition to a residential care facility in Maryland, USA. One woman had dementia (Nellie), whilst the other had primarily physical limitations and intact cognition (Rosalie). Thus, only data pertaining to Nellie are considered in this review.

Nellie experienced four housing transitions over the 10 years before the study: independent living, to assisted living, to dementia care unit and to her current residence in a 24-hour assisted living facility, ‘Valley Glen’. Nellie’s experiences were described by proxy. Reports from her daughter (Annie), her case manager and her social worker, as well as observational notes from researcher visits to Valley Glen were used to construct a representation of Nellie’s experiences. Nellie’s first-hand reports were not sought because she was deemed to have ‘no remaining language at the time of [the] research at Valley Glen’ (p. 127). The authors used a ‘collaborative coding methodology, based in the tradition of grounded theory’ (p. 125) to analyse the interview transcripts and field notes. In the context of Nellie’s changing needs over the course of her dementia, multiple (often abrupt) transitions were deemed necessary to maintain an ‘appropriate fit’ for her.

Mental health challenges as well as financial and familial constraints shaped Nellie’s early housing transitions. By comparison, the relative freedom she experienced when living in the home, facility policies and risk-reduction strategies at Valley Glen continue to constrain Nellie’s autonomy, by limiting her ‘choice, privacy, and personhood’ (p. 131). Finally, the authors stress the importance of considering the temporal context and multi-party views of an individual’s transition experiences. The authors emphasise the value of individual history to contextualise current experiences and events, such as care transitions.

Synthesis: Proxy-report subgroup

Both studies reported a loss of independence and agency for persons with dementia leading up to and subsequent to the transition. Chatterji (1998) and Morgan et al. (2006) portrayed the decision to move to LTC as a family-centred decision, predominantly resting on members of the family other than the person with dementia: Nellie and Mr. Rijder both were excluded from the decision-making process. Nellie was deemed unable to be involved in decision-making about her care, given her degree of cognitive impairment (as perceived by the researcher) at the time of the transition (Morgan et al., 2006). Mrs. Rijder’s deception of Mr. Rijder, leaving him in the verpleeghuis despite overt resistance and distress, is perhaps the most poignant representation of excluding an individual with dementia from the decision-making process (Chatterji, 1998) with clear negative consequences (i.e. dangerous approaches to exiting the LTC facility).

Discussion

The current review has illuminated some of the complexities of transitions to care, and the variability of experiences, as accounted by persons living with dementia (self-report subgroup) and/or their family, friends and/or care providers (proxy-report subgroup). There were evident similarities between these two groups. For example, both groups reported a loss of independence and agency (Aminzadeh et al., 2009; Morgan et al., 2006; Thein et al., 2011) and a lack of involvement in decision-making for persons with dementia (Chatterji, 1998; Thein et al., 2011). However, some of the themes discussed by persons with dementia were not addressed by proxy-reporters. This finding supports the assertion that first-hand accounts of persons with dementia add valuable depth and breadth to our understanding of how to design care that is truly person-centred, and that proxy-reports alone may be insufficient to meeting this aim.

Although varied in design and foci, all seven studies have common threads that have been synthesised here to inform the design of preliminary principles for supporting persons living with dementia throughout such transitions (Aim 1). Similarly, the characteristics of this body of research, the CASP ratings, the design of each study and value of its findings has informed our recommendations and priorities for future research efforts (Aim 2). Each of these aims is addressed in turn.

Aim 1: Preliminary principles for care during transitions to LTC

The first aim of the current review was to establish preliminary principles to guide support provided to persons living with dementia and to their families throughout transitions to LTC. The current review provides insight into the potential value of systematic and rigorous analysis of qualitative accounts for informing the design of sensitive and person-centred care. Five preliminary principles for care have been developed from these accounts:

Principle 1: Persons living with dementia and their families should be supported with respect to their unique, individual context

As stated earlier, these accounts emphasise the value of individual history to contextualise current experiences and events. Aligning with widely accepted person-centred care and broader ‘Personhood’ principles (Kitwood, 1997), the accounts indicated that persons living with dementia and their families are oriented to the multiple factors that can shape their experiences, such as: mental health, family finances, personal history and cultural background. It is important that persons and/or organisations providing support to persons living with dementia transitioning to LTC (e.g. clinicians, allied health practitioners and aged care service providers) remain cognizant of the potential impact of a variety of factors and shape their health and social care practices accordingly.

Principle 2: Both the positives and negatives of transitions to LTC should be acknowledged and validated for persons living with dementia and for their families

The accounts from the findings of the seven studies included in the current review demonstrate that transition to LTC can hold multiple meanings for persons living with dementia and for their families. Both persons living with dementia and their care partners have reported positive feelings of safety, relief, comfort and a hope for rest (Aminzadeh et al., 2009; Graneheim, Johansson, & Lindgren, 2014; Thein et al., 2011). They also reported negative feelings such as grief, loss of independence and autonomy for persons living with dementia (Aminzadeh et al., 2009; Chatterji, 1998; Thein et al., 2011) and a sense of ‘failure’, grief, shame and loss of the caregiver role for care partners (Afram, Verbeek, Bleijlevens, & Hamers, 2015; Chatterji, 1998; Graneheim et al., 2014). Thus, persons living with dementia and their families may require opportunities to discuss what these transitions mean for them, and for these meanings to be acknowledged and validated.

Principle 3: Input should be sought from persons living with dementia regarding decisions to transition to LTC. If the person lacks the capacity to make the decision independently, shared decision-making must be supported

Many persons living with dementia reported a desire to be more involved in decision-making processes (Chatterji, 1998; Thein et al., 2011). Simultaneously, prior research reports that care partners often feel solely responsible for the decision to move the individual with dementia to LTC (Afram et al., 2015; Cole, Samsi, & Manthorpe, 2018; Graneheim et al., 2014). Perhaps, increased input from persons living with dementia regarding decisions to transition to LTC is one way to decrease the ‘decision-making burden’, shame and guilt felt by care partners. The body of research included in the current review identifies that one way this might be achieved is by visiting prospective LTC facilities (Thein et al., 2011). Prior research shows that shared decision-making regarding housing may be achieved ‘in the moment’, through use of a healthcare professional facilitated decision aid (Lord, Livingston, Robertson, & Cooper, 2016) or early in the care continuum, through advanced care planning (Garvelink et al., 2018).

Principle 4: Persons living with dementia and their family and friends should be encouraged to maintain regular social contact throughout all stages of the transition

The accounts reveal that close social contact with family and friends before, during and after the transition to LTC is important for many persons living with dementia (Aminzadeh et al., 2013; Jaffe & Wellin, 2008; Thein et al., 2011). This finding aligns with prior research showing that many care partners also express a desire to maintain contact with their relative with dementia (Graneheim et al., 2014). Thus, persons living with dementia and their families must be supported to maintain social connection across all stages of the care continuum. LTC facilities may encourage frequent face-to-face interaction and ensure access to technologies to support ongoing connection (i.e. phones, internet, computer, etc.). These accounts also suggest that practices such as encouraging family members not to visit in the first days or weeks after admission to LTC can be distressing for persons living with dementia (as described by Chatterji, 1998) and may be revisited as a guiding principle of care.

Principle 5: Once in the LTC facility, persons living with dementia should receive support to integrate socially in the new setting

In addition to maintaining social connection with family and friends (Preliminary Principle 4), persons living with dementia reported a need for social integration and new connections with co-residents in the LTC setting. Barriers to social integration included variability in cognitive abilities in co-residents and staff negative assumptions regarding cognitive status. Thus, persons living with dementia may require support to establish new social connections with co-residents and care staff upon arrival to the LTC facility and into their time living there. This may, for example, be achieved through involvement in shared activities (Clark, Tamplin, & Baker, 2018), measures to improve the communicative abilities of persons with dementia (Morello, Lima, & Brandao, 2017; Swan et al., 2018) and/or training for communication partners (Conway & Chenery, 2016; O’Brien et al., 2018; Williams, Newman, & Hammar, 2018).

Aim 2: Recommendations and priorities for future research in care transitions.

The second aim of the current review was to establish recommendations and priorities for future research efforts on studying transitions to care. These were informed by the CASP checklist responses (Table 2) as well as a critical appraisal and interpretation of the scope of the body of literature described in this review.

Persons with dementia can share their perspectives and experiences

The current review demonstrates that some persons living with dementia can participate in research, and retain some ability to communicate their experiences, when supported to do so (CASP items 3 and 5: a number of studies adopted appropriate research design, and data were collected in a way that addressed the research issue). Prior research describes a number of ways that research participation can be supported. The current review shows that there are many lessons researchers and clinicians can learn from persons who are living with dementia; that they have important and valuable pieces of information to share; that their accounts reveal the inherent complexities of transitions. Therefore, future research in dementia care should look to rich, first-hand accounts from persons living with dementia to shape policy and to develop guidelines for clinical practice and care that are person-centred and sensitive to myriad needs of persons living with dementia.

Persons with dementia have seldom been asked to share their perspectives and experiences

The current review demonstrates that perspectives of persons living with dementia on transitions have seldom been sought, elicited or reported on in the scientific literature. In addition, this small body of literature is limited in the variability of participant characteristics and of methodological approaches.

Participants most often were in the mild-moderate stages of dementia, were from a western cultural background and all were over 65 years old. Therefore, the perspectives of persons with severe dementia symptoms, from different cultural backgrounds and/or with younger onset dementia are not represented in the literature to date. Similarly, the perspectives of persons with significant communication challenges are not represented herein. This is unsurprising given the cognitive and linguistic difficulties inherent to dementia are widely thought to influence an individual’s ability to engage in meaningful interactions for research purposes (Carmody, Traynor, & Marchetti, 2015a; Cridland, Phillipson, Brennan-Horley, & Swaffer, 2016). It is important that these voices be heard because their needs may differ from those persons who retain some ability to express verbally their wants, needs and preferences.

Furthermore, limited methodological approaches have been adopted in included studies, with a predominance of interview methods. CASP evaluation revealed: varied appropriateness of research design to meet research aims (CASP item 3), one study that did not address ethical considerations (CASP item 7; Chatterji, 1998) and variability in the rigour of data analysis (CASP item 8; Aminzadeh et al., 2009, 2010, 2013). Given the paucity of literature in this area, future research should seek to increase the quality of this body of literature research though transparent consideration of appropriateness of research design, demonstrations of analytical rigour and explicit discussion of ethical considerations.

To ensure authentic representations of persons with dementia, persons of diverse ages, cognitive abilities, communicative abilities and cultural backgrounds (i.e. culturally and linguistically diverse groups) must be supported to offer their perspectives and contribute to the conversation. Future research may, therefore, continue to develop novel and creative means to overcoming challenges to involving a variety of persons with dementia in research (e.g. see Di Lorito et al., 2017; Phillipson & Hammond, 2018; Tsekleves, Bingley, Lujan Escalante, & Gradinar, 2018). The development and adoption of such methods has the potential to respond to the clinical and ethical imperative to listen to the voices of persons with dementia.

A need to challenge use of proxy-reporting practices in (experience-based) dementia research

The current review identified two studies (Chatterji, 1998; Morgan et al., 2006) in which the experiences of persons living with dementia were represented by proxy reports. For researchers adopting this approach, the severity of cognitive impairment and participants’ communication challenges often were cited as reasons for not eliciting first-hand accounts directly from persons with dementia. Although they may have some insight into the experience of persons with dementia, the accounts from proxy reporters in the current review offer a different picture of the transition versus first-person accounts from persons living with dementia. The use of proxy-report and subsequent claim to knowledge regarding the experience of the individuals with dementia not only represent a clear privileging of the accounts of persons without dementia, but also fail to pay due respect to the realities of persons with dementia; whatever they may be (i.e. the research design and data collection method were not the most appropriate to address the research aims, CASP items 3 and 5). Thus, researchers should be prompted to question the validity of proxy-report, especially when cognitive changes may influence persons’ experiences of their world. As stated above, further development of creative means to ‘getting at’ the perspectives and experiences of persons with dementia is required.

A need to explore shared transition experiences

The current review highlights that the experiences of persons living with dementia and their families are closely intertwined and suggests that there may be some potential to improve the shared experience of these transitions. Only one study provides an initial insight into aspects of family interactions during this type of transition. Chatterji’s (1998) account reveals contrasting perspectives about the process of Mr. Rijder’s transition to the verpleeghuis, specifically as they ‘played out’ through conversation. From speech-language pathology and audiology perspectives (the authors’ disciplinary perspectives), it is imperative that future research explores how dementia-related interactional changes (Kindell, Keady, Sage, & Wilkinson, 2017; Nilsson, Ekström, & Majlesi, 2018) shape the shared transition experiences of persons living with dementia and their families. Future intervention research should continue to explore the: means for supported/shared decision-making with persons living with dementia, ways to improve LTC facility practices for admissions of persons living with dementia and ways to support new and existing social connections in the LTC setting.

Conclusion

The current qualitative systematic review demonstrates the value of exploring the experiences of persons living with dementia to inform care and to establish recommendations and priorities for future research. The current review shows that, throughout transitions from community to LTC, persons living with dementia and their families should be supported: with respect to their individual contexts, to share the positives and negatives of the transition experiences, to make decisions together and to maintain old and to establish new social connections. As sensitive and considerate researchers and health care service providers, it is our role to listen to and to read the accounts of persons living with dementia and to centre our practices around what they tell us. Such actions will act to improve support provided to persons living with dementia and their families in the community, in LTC settings, and in the transition between these two environments.

Footnotes

Acknowledgements

Many thanks to Anthea Bott for assisting with review of articles and to Dr. Carly Meyer for guidance throughout the review process. Many thanks to Raechel Damarell for her assistance in developing the initial search strategy. Many thanks to Professors Debbie Rudman and Anne Kinsella for comments on early writings that informed this review.

Declaration of Conflicting Interests

The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: This review is being completed in the context of the first author’s cotutelle PhD between Flinders University, South Australia and Western University, London, Canada.

Ethics approval

As the current systematic review reports on findings from published peer-reviewed articles only, ethics approval was not required.

Funding

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

Notes

Jessica A Young is a speech pathologist and current PhD candidate at Flinders University in South Australia and Western University in London, Canada. Her PhD research is exploring how people with dementia are involved in decision-making about their own care. Her work focuses on communication-related challenges common to persons with dementia diagnoses, and how these challenges may impact on decisions to transition to long-term care.

Christopher Lind is associate professor in Audiology at Flinders University in Australia. Christopher has practised, taught and researched in adult rehabilitation for 30 years. The focus of Christopher’s work is to understand the client experience in adult-onset communication difficulties and to provide situationally relevant intervention(s) that address clients’ functional needs arising as a result.

JB Orange is a professor in the School of Communication Sciences and Disorders at Western University at London Canada, and an Associate Scientist with Lawson Health Research Institute at London, Canada. He also is the Scientific Director of the Canadian Centre for Activity and Aging at Western University. Professor Orange’s peer-reviewed book chapter publications and funded research address language and cognitive-communication disorders of adults and older adults. His research has a special emphasis on discourse of individuals with various forms of dementia.

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