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Evaluation of Person-Centredness in Rehabilitation for People Living with Dementia Is Needed: A Review of the Literature

Evaluation of Person-Centredness in Rehabilitation for People Living with Dementia Is Needed: A... Hindawi Journal of Aging Research Volume 2019, Article ID 8510792, 9 pages https://doi.org/10.1155/2019/8510792 Review Article Evaluation of Person-Centredness in Rehabilitation for People Living with Dementia Is Needed: A Review of the Literature 1,2 2,3 2,4 Kate Allen Christensen , Karen-Margrethe Lund , and Jette Thuesen Department of Occupational erapy and Physiotherapy, Zealand University Hospital, Roskilde–Koege, Sygehusvej 10, 4000 Roskilde, Denmark Department of Public Health, J. B. Winsløwsvej 9A, University of Southern Denmark, 5000 Odense C, Denmark Department of Occupational erapy, University College Absalon, Parkvej 190, 4700 Næstved, Denmark Danish Knowledge Centre for Rehabilitation and Palliative Care (REHPA), Vestergade 17, 5800 Nyborg, Denmark Correspondence should be addressed to Kate Allen Christensen; katiechristensen@yahoo.com Received 30 November 2018; Revised 14 March 2019; Accepted 24 March 2019; Published 2 May 2019 Academic Editor: F. R. Ferraro Copyright © 2019 Kate Allen Christensen et al. )is is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Background. With an expected increase in the prevalence of dementia, change in care policies and healthcare systems worldwide is needed. Rehabilitation is increasingly recognised as contributing to dementia care. Rehabilitation subscribes to person- centredness, and thus, evaluations of person-centredness in rehabilitation for people living with dementia are relevant in or- der for healthcare professionals to know how best to practice person-centredness. Aim. )e aim of this study was to identify methods of evaluating person-centeredness in rehabilitation for people living with dementia. Materials and Methods. Review of the literature using the search terms dementia, person-centredness, and rehabilitation or occupational therapy. Databases searched included: CINAHL, PubMed, Embase, PsycINFO, OTseeker, and SveMed+. )e study included peer-reviewed articles from year 2000 to 2018 in Danish, English, Norwegian, or Swedish. Results. Only one academic article met the inclusion criteria. In that article, person-centred practice was evaluated using observation and interview as well as analytical frameworks from person- centred care and occupational therapy. Conclusion. Evaluations of person-centred practice in rehabilitation for people living with dementia in peer-reviewed literature are lacking. Evaluations are needed to identify effective strategies to pursue and uphold person-centred care. Given the dearth of research on evaluations of person-centredness in rehabilitation, this article included research in person-centred dementia care in the discussion, which potentially can inspire practice and research of rehabilitation for people living with dementia. To understand the complex nature of person-centredness, a variety of research methodologies of qualitative and quantitative characters are recommended for evaluations. Health Response to Dementia [8], and in Denmark, re- 1. Introduction habilitation is recommended in national clinical guidelines [9]. According to the World Health Organisation (WHO), 35.6 According to Linda Clare [5], a leading scholar in the field, million people across the world live with a dementia disease the rehabilitation philosophy is genuinely person-centred and [1]. Dementia is a clinical syndrome characterised by pro- reflects important values underpinning good dementia care. gressive cognitive decline that interferes with the ability to Clare associates person-centredness in dementia re- perform daily activities and live independently [1, 2]. )e habilitation to the theoretical works of Tom Kitwood [10]. In increase in the number of people living with dementia ne- dementia care, person-centredness includes supporting in- cessitates change in care policies and healthcare systems to dividual personhood and establishing meaningful relation- maintain acceptable standards of care and quality of life for ships, shared decision making, and personalised care and people living with dementia [3]. Rehabilitation is increasingly environments, using the person’s biography [10, 11]. recognised as contributing to dementia care [4–7]. Re- Person-centred rehabilitation for people living with habilitation appears as a core recommendation in the recent dementia involves working with people to achieve the goals that are important to them, acknowledging that each World Health Organisation Global Action Plan on the Public 2 Journal of Aging Research individual has a unique set of experiences, values, motiva- document [33], was used as structured guides to organise and tions, strengths, and needs [5]. Also, in generic rehabilitation conduct the review. literature, person-centredness has been described as a key principle and value [12, 13]. 3. Search Strategy Conceptually, person-centredness has much in common To generate the list of search terms, we undertook preliminary with the concept of client-centredness underpinning occu- searches in relevant scholarly databases to identify subject pational therapy [14, 15]. Person-centredness also overlaps headings and keywords, as recommended by Lund et al. [34]. with patient engagement in healthcare, comprising similar Articles from the preliminary searches, as well as experts in features such as shared decision making and individually the field of dementia and rehabilitation, further qualified the tailored interventions [16]. In this study, we use person- list of search terms. On the 14th of March 2017, the following centredness as an umbrella concept. Following Hughes and databases were searched using subject headings colleagues [17] we consider the idea of centredness to (e.g., CINAHL headings and MeSH) and keywords on the comprise issues related to respect for individuality, personal search terms dementia, person-centredness, and rehabilitation values and meaning, therapeutic alliance, social context and or occupational therapy: CINAHL via EBSCOhost, PubMed relationships, inclusive model of health and wellbeing, ex- via NCBI, Embase and PsycINFO via Ovid, OTseeker, and pert lay knowledge, shared responsibility, communication, SveMed+ (CINAHL and PubMed search strategies are de- autonomy, and the professional as a person. tailed in Appendix 1). Limitations included peer-reviewed Research on person-centredness is growing, showing articles published between 2000 and 2017 and in English, challenges and potentials in rehabilitation [18, 19], occu- Swedish, Norwegian, or Danish. Email alerts from the da- pational therapy [20], dementia care [21, 22], and healthcare tabases were received until 1st of November 2018. OTseeker in general [16, 23]. Barriers to a person-centred approach in and SveMed+ were re-searched on the 19th of November healthcare for people with dementia include some healthcare 2018, as these databases do not provide alert services. professionals doubting the capacity of people living with dementia to partake in decision making [24, 25]. Conversely, other researchers argue that people living with dementia 3.1. Inclusion Criteria want to be involved in making decisions about their own care, e.g., through individualised care plans [26, 27]. (i) Peer-reviewed articles in English, Danish, Norwe- As healthcare worldwide is advocating evidence-based gian, or Swedish published from 2000 to November practice to assure a sound knowledge base for interventions, 2018, as prominent authors in the fields of re- it is relevant to investigate and evaluate person-centred habilitation of people living with dementia initiated approaches. A review of the literature on people with de- research around 2000 [35]. mentia and family involvement in shared decision making (ii) Participants of all ages, with a diagnosis of dementia, showed that people with dementia were involved in decision including Alzheimer’s, Lewy body disease, vascular making to various degrees, but most were prematurely dementia, or frontotemporal dementia, as the most excluded from decision making [25]. A later meta-analysis common underlying pathologies of dementia [1, 2]. concluded that intensive person-centred care for people with (iii) Studies evaluating aspects of person-centredness: dementia improved their neuropsychiatric symptoms and quality of life in long-term care but that future research respect for individuality, personal values and meaning, therapeutic alliance, social context and should include how person-centred care is carried out in daily practice [28]. relationships, inclusive model of health and well- being, expert lay knowledge, shared responsibility, A recent review on person-centred care for individuals communication, autonomy, and the professional as with dementia argued the need for evaluating care practices a person [17]. to make appropriate changes to person-centred care [29]. Person-centeredness in rehabilitation might encompass (iv) Studies using all forms of methodological design to other elements than person-centeredness in other care evaluate person-centredness. We defined evaluation contexts [30]. Considering the focus of person-centredness as any method (e.g., interview, observation, and in rehabilitation as well as occupational therapy, we were questionnaire) that collected and documented in- curious to explore how person-centredness was evaluated in formation on person-centredness [18]. these fields of practices. (v) Settings of rehabilitation or occupational therapy, as )e aim of this study was to identify methods of eval- occupational therapy is often part of rehabilitation uating person-centeredness in rehabilitation for people and a recommended discipline for people living living with dementia. with dementia [36–38], and client-centred practice forms the basis of occupational therapy [15]. 2. Materials and Methods We used the principles presented by Gough et al. [31] to 3.2. Exclusion Criteria understand and guide reflections of the review of the liter- ature. )e matrix method [32], as well as the 27-item checklist (i) Study participants with a diagnosis of mild cogni- of PRISMA Statement Explanation and Elaboration tive impairment, Huntington’s disease, Creutzfeldt Journal of Aging Research 3 Jacobs, dementia associated with Parkinson’s, and memory support unit [45]. Qualitative methods of obser- AIDS or cognitive decline not diagnosed as dementia vations of people living with dementia and healthcare professionals were used, as well as interviews with healthcare (ii) Interventions focused on person-centredness in professionals and families [45]. Person-centredness was research or participatory design evaluated using analytical frameworks derived from person- (iii) Approaches aimed exclusively at the next of kin or centred care and occupational therapy [46, 47]. informal caregiver )e methodological design of phenomenology was ap- (iv) Study protocols and literature reviews propriate to address the aim of examining participants lived experience. Inclusion criteria were presented; however, it (v) Studies from nonwestern countries, to utilise knowledge from countries with which Denmark was not clear if some people chose not to take part in the study. Generally, transparency in data collection was pres- usually compares itself ent, with a topic guide for participant observation; however, a topic guide for the interviews lacked. Analysis showed 4. Study Selection rigour in generation of themes across cases. Ethics were Two authors searched and reviewed the literature (KML and considered, and consent forms were completed for all KAC). Both carried out the preliminary searches, identifying participants; however, there were no details on how research subject headings and keywords. One reviewer (KAC) did the was explained to participants. )ere was a clear statement of final search and exported the results to the EndNote ref- findings and discussion of the evidence and credibility of the erence system [39]. Duplicates were checked electronically findings (Table 1). and manually in Endnote by both reviewers. Articles were exported from Endnote to the screening and data extraction tool Covidence [40]. Each reviewer independently screened 5.2. Characteristics of the Included Article. Person-centred titles and abstracts in Covidence. )e inclusion and ex- practice was evaluated using observation and interview as clusion criteria guided the title and abstract screening. well as analytical frameworks from person-centred care Inspired by Garrard [32], a review matrix was created in and occupational therapy. )e result of the included article an Excel spreadsheet that contained our research questions. was that social therapeutic interactions can promote or Both reviewers read the articles included for full-text reading inhibit occupational engagement. )e social environment and each reviewer filled out the review matrix independently was analysed in terms of the role of staff in providing an and together discussed the inclusion, until consensus was environment that promoted volitional expressions and oc- reached [33]. A checklist from the Critical Appraisal Skills cupational engagement. )e focus was on healthcare pro- Programme (CASP) was used to assess the quality of final fessionals’ abilities to interact and communicate with people inclusion [41]. with dementia. )e study showed that people living with dementia maintained a desire to engage in everyday activ- 5. Results ities, but if healthcare professionals were unskilled in identifying or overruled clients’ efforts, the level of en- )e result of the search strategy is presented in a PRISMA gagement was lowered. Communication skills for promoting flow diagram in Figure 1 [42]. A total of 2150 articles were volitional expressions and occupational engagement in- identified, 1444 articles via databases and 706 articles via cluded aspects of recognition, validation, negotiating per- database alerts and re-searching. Titles and abstracts were sonal preferences, celebrating activities of enjoyment, screened by both reviewers on 2150 peer-reviewed articles. capitalising on remaining interests and strengths, and en- Full texts were read for further assessment of the eligibility of couraging and reinforcing engagement. Attention was given 25 articles, of which only one article met the criteria for to fluctuating abilities and elusive ways of expressing inclusion. Articles were mostly excluded, as evaluation of preferences. )e preferences of people living with dementia person-centredness was lacking or person-centredness was were typically indicated, not through verbal or behavioural evaluated in other settings than rehabilitation and occu- movement towards activities but rather through behaviours pational therapy. demonstrating resistance to participate. )erefore, fine- tuned observational skills and the use of observational as- sessments were important as well as abilities to reflect on the 5.1. Quality of the Included Article. )e quality of the study therapeutic use of self [45]. was assessed using a checklist for qualitative studies, from To provide a more person-centred social environment CASP [43]. As the result study referred to Raber et al. [44] the authors highlighted (1) a substantial need for education for methodological details, information from this study was with a focus on skills of communication and observation, included. )ere was a clear statement of the aim of the including reflection for both staff and family and (2) culture research, including goals, importance, and relevance. )e change in the facility [45]. aim was to present and discuss the potency of the social environment in promoting volition and engagement in people living with dementia, using two case studies, each 6. Discussion including two people with moderate dementia, two family members, and two healthcare professionals. )e setting was )e aim of this study was to identify methods of evaluating therapeutic activity sessions in occupational therapy in a person-centeredness in rehabilitation for people living with 4 Journal of Aging Research Records identified through database Additional records identified through searching (n = 1784) alerts (n = 700) (i) CINAHL (n = 789) (i) CINAHL (n = 511) (ii) Embase (n = 459) (ii) Embase (n = 5) (iii) Otseeker (n = 11) (iii) Pubmed (n = 99) (iv) PsycINFO (n = 116) (iv) PsycINFO (n = 85) (v) PubMed (n = 364) (vi) SveMed+ (n = 45) Records identified through re-search of databases (n = 6) (i) OTseeker (n = 2) Duplicates removed (ii) SveMed+ (n = 4) (i) Electronically (n = 253) (ii) Manually (n = 87) Records aer duplicates removed (n = 1444) Records excluded Records screened (n = 2125) (n = 2150) Full-text articles excluded, with reasons (n = 24) Full-text articles assessed for eligibility Wrong patient population (n = 25) (n = 3) Nonwestern country (n = 1) No evaluation of user involvement (n = 10) Evaluated person-centred practice in other settings than rehabilitation and occupational therapy (n = 10) Studies included as result (n = 1) Figure 1: PRISMA 2009 flow diagram. dementia. Considering the focus on person-centredness and focused on the social environment in terms of interaction, rehabilitation for people living with dementia, it was sur- communication, and observation. Following these findings, prising to find that only one study was found in a review of we will discuss the social environment, communication and the literature that evaluated person-centredness in re- interaction, and the use of observational skills in un- habilitation for people living with dementia. Moreover, the derstanding people living with dementia. We will suggest article did not explicitly address rehabilitation, but occu- potential ways to evaluate person-centred practice in re- pational therapy. habilitation based on literature from other fields of practices. Person-centredness includes among other components Finally, we will reflect on the concept of rehabilitation for social context and relationships [17]. )e included study people living with dementia. Identification Eligibility Screening Included Journal of Aging Research 5 Table 1: Methodological quality of the included article. Author, Aim Methods design Population setting Result Quality of study based on CASP year, country Strengths: Clear aim. Appropriate design. Transparent data Qualitative. 2 study cases: 2 PWD To discuss the collection and data analysis. Ethics Data collection: (moderate), 2 family potency of the Social therapeutic considered. Clear statement of interview and members, 2 staff. Teitelman social environment interactions can findings. Discussion of evidence observation Setting: )erapeutic et al. [45], in facilitating promote or inhibit and credibility of findings. Data analysis: Van activity sessions in 2010, USA occupational occupational Weaknesses: Unclear if some Manen’s occupational therapy engagement in engagement participants chose not to take part. phenomenological in a memory support PWD No topic guide for interviews. No analysis unit details on how research was explained to participants PWD � people with dementia; CASP � Critical Appraisal Skills Programme. 6.1. Social Environment. Teitelman, Raber, and Watts [45] understand a person’s motivation to engage in activities is focused on the significance of the social environment in especially important as illness progresses, where facilitation determining whether people with dementia engage in pre- of engagement in alternative everyday activities may be ferred occupations. A recent critical interpretive synthesis of necessary [61]. It is here relevant to consider that individual preferences might change over time and there is therefore a meaningful engagement and person-centred residential dementia care concluded similar findings, highlighting that risk that inaccurate assumptions about the preferences of people living with dementia can be made, if not first collaborative partnerships between staff, residents, family members, and significant others were critical in imple- reflecting or clarifying with the person themselves [48, 52]. menting person-centred care [48]. According to empirical Teitelman et al. [45] noted that communication was studies from other fields of practice, not only the social challenged by fluctuating abilities of people living with but also the organisational environment like policies, dementia to express their preferences and take part in shared leadership, routines, architecture, and shared accommoda- decision making. )is has also been observed in other tion can promote or restrict person-centred approaches studies [51, 52]. Using models like the Intentional Re- [49–51]. Inadequate staffing can result in task-oriented care lationship Model may make professionals aware of the instead of person-centred care, and participation of people therapeutic use of self and foster interpersonal encounters [45, 47]. living with dementia can be adjusted, primarily to suit in- stitutional objectives and secondly to fit the resident’s needs and wishes [52, 53]. St-Amant et al. [51] revealed how the 6.3. Use of Observation in Understanding People with Canadian homecare system based decisions related to Dementia. Teitelman et al. [45] described the need for moving into nursing homes on waiting lists and not on the observational skills in communication and in understanding expressed needs of people living with dementia. According the preferences of people living with dementia. )ey found to other studies, involvement of residents with dementia can that the preferences of people living with dementia were be enhanced if leaders are role models and provide often expressed through behaviours demonstrating a desire healthcare professionals with support, acknowledgement, not to participate. )is embodied way of communication is and feedback on their interactional abilities [49, 50]. Similar challenging for healthcare professionals to routinely identify challenges and potentials are raised in OT literature [54, 55] [62]. Drawing on the idea of embodied personhood, Kontos and in literature on healthcare in general [56]. and Naglie [62] advocated the communicative capacity of the body to connect people to each other, fostering sym- 6.2. Communication and Interaction. )e potential power pathetic care and improving person-centred dementia care. Especially when people with dementia show signs of severe dilemmas in communication and interaction described by Teitelman et al. [45] are supported in research from other cognitive impairment, healthcare professionals may better fields of practice and discussed as a barrier to person- achieve person-centred care when recognising that per- centredness [57, 58]. Studies describe care climates, where sonhood persists despite the presence of cognitive impair- healthcare professionals dehumanise people living with ment. )is is, for example, achieved when professionals dementia as people who do not know their own best interest observe and imagine how another person might feel in a [53, 57]. given situation, based on their own bodily experiences [62]. Similar to Teitelman et al. [45], other researches describe To further understand people living with dementia, it is a variety of ways to interact and communicate with people relevant to observe the person’s engagement in everyday activities [63, 64]. A literature review found that people living with dementia [57, 59]. Being fully present and using skills such as empathy, advocacy, and patience may influence living with dementia want to engage in meaningful activities to be connected with self, others, and the environment [61]. the ability and wishes of people living with dementia to participate [50, 60]. )e need for healthcare professionals to In a study of meanings and motives for engagement in self- 6 Journal of Aging Research [6]. Researchers describe a reluctance to use the terminology chosen occupation, it was found that selecting occupations might contribute to personal identity, experience of au- of rehabilitation with regard to multidisciplinary re- habilitative services for people with dementia, because of the tonomy, and increased wellbeing of people living with de- mentia [63]. Research has shown how everyday activities, progressive nature of the illness and distrust in people with like meal times, self-care, or music activities, can be altered dementias abilities to partake in actions like goalsetting. to become therapeutic interactions with high levels of en- Instead, terminologies like function-focused care, reable- gagement and decision making [52, 59]. ment, restorative care, or goal-oriented care are used [6, 69]. Furthermore, there is not yet consensus as to what re- habilitation for people with dementia entails [6]. 6.4. Need for Evaluation. As only one study was found in this Caregivers are often involved in a rehabilitation process review of the literature that evaluated person-centredness in and primary caregivers of people with dementia are essential rehabilitation, we argue that there is a need for further in the daily support [22, 36]. In this study, we focused on the research that evaluates person-centred approaches in re- person with dementia in respect of the person with the habilitation for people living with dementia. )is need is also illness and in line with the current paradigm of person- pertinent in person-centred dementia care in general [29]. centredness. In rehabilitation of people with dementia, it Although rehabilitation and occupational therapy subscribe may have been more appropriate to include evaluations of to person-centredness, it is not imperative that all healthcare proxy respondents. professionals working in rehabilitation or as occupational therapists practice person-centredness [54, 65]. Evaluations of person-centred practice are important, in order for 6.6. Strengths and Limitations. )is study has illustrated person-centredness to continue to be a guiding principle in the lack of research-based knowledge evaluating person- rehabilitation and occupational therapy [20]. centredness in rehabilitation for people living with demen- Future research in person-centred rehabilitation can tia. However, this study’s limitations must be considered learn from research in person-centred dementia care in when interpreting our result. Relevant articles may have been general. In their study, Teitelman and colleagues [45] used missed in the review of the literature, as we excluded literature observational methods as well as interviews with healthcare published prior to the year 2000, research published in other professionals and families. A combination of interview and languages than English, Norwegian, Swedish, and Danish, observational methods are widely used when evaluating and research from nonwestern countries. Furthermore, we person-centred care in dementia [50, 52], including the excluded grey literature which may hold valuable insights observation of interactions in daily activities [50, 52]. Ob- [32], especially in reviews on person-centred approaches [70]. servations can be guided by existing standardised assessment Although we were thorough in our identification of procedures like Dementia Care Mapping [60] or by quali- search terms, relevant synonyms for person-centredness tative methodology such as grounded theory [50, 53] or could have been missed due to heterogeneity of defini- ethnography [51, 57]. Edvardsson, Sandman, and Borell [49] tions and understandings of person-centred approaches used the Swedish version of person-centred care assessment [18, 56]. Furthermore, evaluation may have been defined too tool (PCAT) and the person-centred climate questionnaire narrowly. (PCQ) to measure perceived person-centredness of care and Initially, we viewed the addition of a third search block of environment from the perspectives of healthcare pro- rehabilitation or occupational therapy as a strength to fessionals. Perceived person-centredness of care could also systematically answer the research questions [32, 34]. In be evaluated by residents and family members [49]. hindsight, it may have been a major limitation, as in- Teitelman et al. [45] argued that traditional assessment terventions related to rehabilitation may be named by other and self-report for people with moderate dementia were not terms such as function-focused care [69], restorative care appropriate. Contrary, other researchers state that even [71], reablement [72], or habilitation [73]. people with dementia in advanced stages can participate in It may be a limitation that we did not change the research interviews and express their preferences [66, 67]. In occu- questions or inclusion criteria, when we learnt that only one pational therapy, critics argue that person-centredness, in article could be identified in the review of the literature. We terms of client-centredness, should include evaluations from however regarded it interesting and important to make the perspectives of the patients themselves [20]. Including explicit that when reviewing the literature, using these search the perspectives of people living with dementia in evalua- terms, literature on evaluations of person-centredness in tions of communication is likewise recommended in a recent rehabilitation for people living with dementia was lacking. review [68]. 7. Conclusion 6.5. Rehabilitation and People Living with Dementia. Rehabilitation with the guiding principle of person- Rehabilitation, with person-centredness as a guiding prin- centredness is recommended for people living with de- ciple, has been recommended to people living with dementia mentia in international health standards [8]. )e slim result for decades. )is study suggests that evaluations of person- of this search for evaluations of person-centredness in de- centredness in rehabilitation for people living with dementia mentia rehabilitation may be due to the lack of conceptual in peer-reviewed literature are lacking. Only one article consensus of rehabilitation for people living with dementia could be identified in a review of the literature that evaluated Journal of Aging Research 7 person-centredness in rehabilitation for people living with Abstract] OR Patient Focus[Title/Abstract] OR Patient Focused dementia, and the identified study was in the field of oc- [Title/Abstract] OR Person Centered[Title/Abstract] OR Person cupational therapy. )is gap in research is important be- Centred[Title/Abstract] OR Person Centeredness[Title/Ab- cause the evaluation and documentation of interactions stract] OR Person Centredness[Title/Abstract] OR Client between people living with dementia and healthcare pro- Centered[Title/Abstract] OR Client Centred[Title/Abstract] OR fessionals in rehabilitation are needed to identify effective Client Centeredness[Title/Abstract] OR Client Centredness strategies to pursue and uphold person-centred care. [Title/Abstract] OR Personalised[Title/Abstract] OR Personal- It was discussed whether a lack of consensus of re- ized[Title/Abstract] OR Individualised[Title/Abstract] OR In- habilitation for people living with dementia could account dividualized[Title/Abstract] OR Tailored[Title/Abstract] OR for the lack of identified literature. Given the dearth of Tailor Made[Title/Abstract] OR Tailormade[Title/Abstract] OR research in the area, this article included research in person- User Involvement[Title/Abstract] OR End User Involvement centred dementia care in the discussion, which potentially [Title/Abstract] OR User Participation[Title/Abstract] OR End can inspire practice and research of rehabilitation. To un- User Participation[Title/Abstract] OR Patient Participation [Title/Abstract] OR Patient Involvement[Title/Abstract] OR derstand the complex nature of person-centredness, a va- riety of research methodologies of qualitative and Patient Engagement[Title/Abstract] OR Citizen Involvement quantitative character are recommended for evaluations. [Title/Abstract] OR Citizen Participation[Title/Abstract] OR Consumer Participation[Title/Abstract] OR Consumer In- volvement[Title/Abstract] OR Shared Decision Making[Title/ Appendix Abstract] OR Shared Decision Makings[Title/Abstract] OR According to PRISMA guidelines [42], a full electronic Collaboration[Title/Abstract] OR Partnership[Title/Abstract] search strategy for at least one database, including date of OR Partnerships[Title/Abstract] OR Goal Setting[Title/Ab- search and limits used, must be presented. stract] OR Goal Settings[Title/Abstract] OR Goalsetting[Title/ We used the following search strategy, formulated in Abstract] OR Goalsettings[Title/Abstract])))) AND ((((((Oc- CINAHL and adapted it to all databases searched: Dementia cupational )erapy[Title/Abstract] OR Occupational )erapies ∗ ∗ ∗ [Title/Abstract] OR Rehabilitation[Title/Abstract] OR Re- OR Alzheimer OR Lewy Bod AND Patient Cent OR ∗ ∗ ∗ Patient-Cent OR Patient Focus OR Patient-Focus OR habilitations[Title/Abstract] OR Reablement[Title/Abstract] ∗ ∗ ∗ OR Re-ablement[Title/Abstract] OR Restorative Care[Title/ Person Cent OR Person-Cent OR Client Cent OR Client- Cent OR Personalised OR Personalised OR Individualised Abstract]))) OR rehabilitation center[MeSH Terms]) OR Re- OR Individualised OR Tailored OR Tailor-Made OR Tailor- habilitation[MeSH Terms]) OR Occupational )erapy[MeSH Made OR Tailormade OR User-Involvement OR User- Terms]) AND ((“2000/01/01”[PDat] : “3000/12/31”[PDat]) Involvement OR End User-Involvement OR End-User AND (Danish[lang] OR English[lang] OR Norwegian[lang] OR Involvement OR User-Participation OR User-Participation Swedish[lang])). OR End User-Participation OR End-User Participation OR Patient Participation OR Patient Involvement OR Pa- Disclosure tient Engagement OR Citizen Involvement OR Citizen Par- ticipation OR Consumer Participation OR Consumer )e study was done as part of employment and studies at the Involvement OR Shared Decision-Making∗ OR Shared De- Department of Occupational )erapy and Physiotherapy, cision-Making∗ OR Collaboration OR Partnership∗ OR Goal Zealand University Hospital, Roskilde–Koege, Sygehusvej Setting∗ OR Goal-Setting∗ OR Goalsetting∗ AND Occu- 10, 4000 Roskilde, Denmark; the Department of Public pational )erap∗ OR Rehabilitation∗ OR Reablement OR Re- Health, J.B. Winsløwsvej 9A, University of Southern Den- ablement OR Restorative Care. Limits: Peer reviewed AND mark, 5000 Odense C, Denmark; and the Danish Knowledge year 2000–14.03.2017 AND Danish OR English OR Nor- Centre for Rehabilitation and Palliative Care (REHPA), wegian OR Swedish. Vestergade 17, 5800 Nyborg, Denmark. 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Evaluation of Person-Centredness in Rehabilitation for People Living with Dementia Is Needed: A Review of the Literature

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Copyright © 2019 Kate Allen Christensen et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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10.1155/2019/8510792
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Hindawi Journal of Aging Research Volume 2019, Article ID 8510792, 9 pages https://doi.org/10.1155/2019/8510792 Review Article Evaluation of Person-Centredness in Rehabilitation for People Living with Dementia Is Needed: A Review of the Literature 1,2 2,3 2,4 Kate Allen Christensen , Karen-Margrethe Lund , and Jette Thuesen Department of Occupational erapy and Physiotherapy, Zealand University Hospital, Roskilde–Koege, Sygehusvej 10, 4000 Roskilde, Denmark Department of Public Health, J. B. Winsløwsvej 9A, University of Southern Denmark, 5000 Odense C, Denmark Department of Occupational erapy, University College Absalon, Parkvej 190, 4700 Næstved, Denmark Danish Knowledge Centre for Rehabilitation and Palliative Care (REHPA), Vestergade 17, 5800 Nyborg, Denmark Correspondence should be addressed to Kate Allen Christensen; katiechristensen@yahoo.com Received 30 November 2018; Revised 14 March 2019; Accepted 24 March 2019; Published 2 May 2019 Academic Editor: F. R. Ferraro Copyright © 2019 Kate Allen Christensen et al. )is is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Background. With an expected increase in the prevalence of dementia, change in care policies and healthcare systems worldwide is needed. Rehabilitation is increasingly recognised as contributing to dementia care. Rehabilitation subscribes to person- centredness, and thus, evaluations of person-centredness in rehabilitation for people living with dementia are relevant in or- der for healthcare professionals to know how best to practice person-centredness. Aim. )e aim of this study was to identify methods of evaluating person-centeredness in rehabilitation for people living with dementia. Materials and Methods. Review of the literature using the search terms dementia, person-centredness, and rehabilitation or occupational therapy. Databases searched included: CINAHL, PubMed, Embase, PsycINFO, OTseeker, and SveMed+. )e study included peer-reviewed articles from year 2000 to 2018 in Danish, English, Norwegian, or Swedish. Results. Only one academic article met the inclusion criteria. In that article, person-centred practice was evaluated using observation and interview as well as analytical frameworks from person- centred care and occupational therapy. Conclusion. Evaluations of person-centred practice in rehabilitation for people living with dementia in peer-reviewed literature are lacking. Evaluations are needed to identify effective strategies to pursue and uphold person-centred care. Given the dearth of research on evaluations of person-centredness in rehabilitation, this article included research in person-centred dementia care in the discussion, which potentially can inspire practice and research of rehabilitation for people living with dementia. To understand the complex nature of person-centredness, a variety of research methodologies of qualitative and quantitative characters are recommended for evaluations. Health Response to Dementia [8], and in Denmark, re- 1. Introduction habilitation is recommended in national clinical guidelines [9]. According to the World Health Organisation (WHO), 35.6 According to Linda Clare [5], a leading scholar in the field, million people across the world live with a dementia disease the rehabilitation philosophy is genuinely person-centred and [1]. Dementia is a clinical syndrome characterised by pro- reflects important values underpinning good dementia care. gressive cognitive decline that interferes with the ability to Clare associates person-centredness in dementia re- perform daily activities and live independently [1, 2]. )e habilitation to the theoretical works of Tom Kitwood [10]. In increase in the number of people living with dementia ne- dementia care, person-centredness includes supporting in- cessitates change in care policies and healthcare systems to dividual personhood and establishing meaningful relation- maintain acceptable standards of care and quality of life for ships, shared decision making, and personalised care and people living with dementia [3]. Rehabilitation is increasingly environments, using the person’s biography [10, 11]. recognised as contributing to dementia care [4–7]. Re- Person-centred rehabilitation for people living with habilitation appears as a core recommendation in the recent dementia involves working with people to achieve the goals that are important to them, acknowledging that each World Health Organisation Global Action Plan on the Public 2 Journal of Aging Research individual has a unique set of experiences, values, motiva- document [33], was used as structured guides to organise and tions, strengths, and needs [5]. Also, in generic rehabilitation conduct the review. literature, person-centredness has been described as a key principle and value [12, 13]. 3. Search Strategy Conceptually, person-centredness has much in common To generate the list of search terms, we undertook preliminary with the concept of client-centredness underpinning occu- searches in relevant scholarly databases to identify subject pational therapy [14, 15]. Person-centredness also overlaps headings and keywords, as recommended by Lund et al. [34]. with patient engagement in healthcare, comprising similar Articles from the preliminary searches, as well as experts in features such as shared decision making and individually the field of dementia and rehabilitation, further qualified the tailored interventions [16]. In this study, we use person- list of search terms. On the 14th of March 2017, the following centredness as an umbrella concept. Following Hughes and databases were searched using subject headings colleagues [17] we consider the idea of centredness to (e.g., CINAHL headings and MeSH) and keywords on the comprise issues related to respect for individuality, personal search terms dementia, person-centredness, and rehabilitation values and meaning, therapeutic alliance, social context and or occupational therapy: CINAHL via EBSCOhost, PubMed relationships, inclusive model of health and wellbeing, ex- via NCBI, Embase and PsycINFO via Ovid, OTseeker, and pert lay knowledge, shared responsibility, communication, SveMed+ (CINAHL and PubMed search strategies are de- autonomy, and the professional as a person. tailed in Appendix 1). Limitations included peer-reviewed Research on person-centredness is growing, showing articles published between 2000 and 2017 and in English, challenges and potentials in rehabilitation [18, 19], occu- Swedish, Norwegian, or Danish. Email alerts from the da- pational therapy [20], dementia care [21, 22], and healthcare tabases were received until 1st of November 2018. OTseeker in general [16, 23]. Barriers to a person-centred approach in and SveMed+ were re-searched on the 19th of November healthcare for people with dementia include some healthcare 2018, as these databases do not provide alert services. professionals doubting the capacity of people living with dementia to partake in decision making [24, 25]. Conversely, other researchers argue that people living with dementia 3.1. Inclusion Criteria want to be involved in making decisions about their own care, e.g., through individualised care plans [26, 27]. (i) Peer-reviewed articles in English, Danish, Norwe- As healthcare worldwide is advocating evidence-based gian, or Swedish published from 2000 to November practice to assure a sound knowledge base for interventions, 2018, as prominent authors in the fields of re- it is relevant to investigate and evaluate person-centred habilitation of people living with dementia initiated approaches. A review of the literature on people with de- research around 2000 [35]. mentia and family involvement in shared decision making (ii) Participants of all ages, with a diagnosis of dementia, showed that people with dementia were involved in decision including Alzheimer’s, Lewy body disease, vascular making to various degrees, but most were prematurely dementia, or frontotemporal dementia, as the most excluded from decision making [25]. A later meta-analysis common underlying pathologies of dementia [1, 2]. concluded that intensive person-centred care for people with (iii) Studies evaluating aspects of person-centredness: dementia improved their neuropsychiatric symptoms and quality of life in long-term care but that future research respect for individuality, personal values and meaning, therapeutic alliance, social context and should include how person-centred care is carried out in daily practice [28]. relationships, inclusive model of health and well- being, expert lay knowledge, shared responsibility, A recent review on person-centred care for individuals communication, autonomy, and the professional as with dementia argued the need for evaluating care practices a person [17]. to make appropriate changes to person-centred care [29]. Person-centeredness in rehabilitation might encompass (iv) Studies using all forms of methodological design to other elements than person-centeredness in other care evaluate person-centredness. We defined evaluation contexts [30]. Considering the focus of person-centredness as any method (e.g., interview, observation, and in rehabilitation as well as occupational therapy, we were questionnaire) that collected and documented in- curious to explore how person-centredness was evaluated in formation on person-centredness [18]. these fields of practices. (v) Settings of rehabilitation or occupational therapy, as )e aim of this study was to identify methods of eval- occupational therapy is often part of rehabilitation uating person-centeredness in rehabilitation for people and a recommended discipline for people living living with dementia. with dementia [36–38], and client-centred practice forms the basis of occupational therapy [15]. 2. Materials and Methods We used the principles presented by Gough et al. [31] to 3.2. Exclusion Criteria understand and guide reflections of the review of the liter- ature. )e matrix method [32], as well as the 27-item checklist (i) Study participants with a diagnosis of mild cogni- of PRISMA Statement Explanation and Elaboration tive impairment, Huntington’s disease, Creutzfeldt Journal of Aging Research 3 Jacobs, dementia associated with Parkinson’s, and memory support unit [45]. Qualitative methods of obser- AIDS or cognitive decline not diagnosed as dementia vations of people living with dementia and healthcare professionals were used, as well as interviews with healthcare (ii) Interventions focused on person-centredness in professionals and families [45]. Person-centredness was research or participatory design evaluated using analytical frameworks derived from person- (iii) Approaches aimed exclusively at the next of kin or centred care and occupational therapy [46, 47]. informal caregiver )e methodological design of phenomenology was ap- (iv) Study protocols and literature reviews propriate to address the aim of examining participants lived experience. Inclusion criteria were presented; however, it (v) Studies from nonwestern countries, to utilise knowledge from countries with which Denmark was not clear if some people chose not to take part in the study. Generally, transparency in data collection was pres- usually compares itself ent, with a topic guide for participant observation; however, a topic guide for the interviews lacked. Analysis showed 4. Study Selection rigour in generation of themes across cases. Ethics were Two authors searched and reviewed the literature (KML and considered, and consent forms were completed for all KAC). Both carried out the preliminary searches, identifying participants; however, there were no details on how research subject headings and keywords. One reviewer (KAC) did the was explained to participants. )ere was a clear statement of final search and exported the results to the EndNote ref- findings and discussion of the evidence and credibility of the erence system [39]. Duplicates were checked electronically findings (Table 1). and manually in Endnote by both reviewers. Articles were exported from Endnote to the screening and data extraction tool Covidence [40]. Each reviewer independently screened 5.2. Characteristics of the Included Article. Person-centred titles and abstracts in Covidence. )e inclusion and ex- practice was evaluated using observation and interview as clusion criteria guided the title and abstract screening. well as analytical frameworks from person-centred care Inspired by Garrard [32], a review matrix was created in and occupational therapy. )e result of the included article an Excel spreadsheet that contained our research questions. was that social therapeutic interactions can promote or Both reviewers read the articles included for full-text reading inhibit occupational engagement. )e social environment and each reviewer filled out the review matrix independently was analysed in terms of the role of staff in providing an and together discussed the inclusion, until consensus was environment that promoted volitional expressions and oc- reached [33]. A checklist from the Critical Appraisal Skills cupational engagement. )e focus was on healthcare pro- Programme (CASP) was used to assess the quality of final fessionals’ abilities to interact and communicate with people inclusion [41]. with dementia. )e study showed that people living with dementia maintained a desire to engage in everyday activ- 5. Results ities, but if healthcare professionals were unskilled in identifying or overruled clients’ efforts, the level of en- )e result of the search strategy is presented in a PRISMA gagement was lowered. Communication skills for promoting flow diagram in Figure 1 [42]. A total of 2150 articles were volitional expressions and occupational engagement in- identified, 1444 articles via databases and 706 articles via cluded aspects of recognition, validation, negotiating per- database alerts and re-searching. Titles and abstracts were sonal preferences, celebrating activities of enjoyment, screened by both reviewers on 2150 peer-reviewed articles. capitalising on remaining interests and strengths, and en- Full texts were read for further assessment of the eligibility of couraging and reinforcing engagement. Attention was given 25 articles, of which only one article met the criteria for to fluctuating abilities and elusive ways of expressing inclusion. Articles were mostly excluded, as evaluation of preferences. )e preferences of people living with dementia person-centredness was lacking or person-centredness was were typically indicated, not through verbal or behavioural evaluated in other settings than rehabilitation and occu- movement towards activities but rather through behaviours pational therapy. demonstrating resistance to participate. )erefore, fine- tuned observational skills and the use of observational as- sessments were important as well as abilities to reflect on the 5.1. Quality of the Included Article. )e quality of the study therapeutic use of self [45]. was assessed using a checklist for qualitative studies, from To provide a more person-centred social environment CASP [43]. As the result study referred to Raber et al. [44] the authors highlighted (1) a substantial need for education for methodological details, information from this study was with a focus on skills of communication and observation, included. )ere was a clear statement of the aim of the including reflection for both staff and family and (2) culture research, including goals, importance, and relevance. )e change in the facility [45]. aim was to present and discuss the potency of the social environment in promoting volition and engagement in people living with dementia, using two case studies, each 6. Discussion including two people with moderate dementia, two family members, and two healthcare professionals. )e setting was )e aim of this study was to identify methods of evaluating therapeutic activity sessions in occupational therapy in a person-centeredness in rehabilitation for people living with 4 Journal of Aging Research Records identified through database Additional records identified through searching (n = 1784) alerts (n = 700) (i) CINAHL (n = 789) (i) CINAHL (n = 511) (ii) Embase (n = 459) (ii) Embase (n = 5) (iii) Otseeker (n = 11) (iii) Pubmed (n = 99) (iv) PsycINFO (n = 116) (iv) PsycINFO (n = 85) (v) PubMed (n = 364) (vi) SveMed+ (n = 45) Records identified through re-search of databases (n = 6) (i) OTseeker (n = 2) Duplicates removed (ii) SveMed+ (n = 4) (i) Electronically (n = 253) (ii) Manually (n = 87) Records aer duplicates removed (n = 1444) Records excluded Records screened (n = 2125) (n = 2150) Full-text articles excluded, with reasons (n = 24) Full-text articles assessed for eligibility Wrong patient population (n = 25) (n = 3) Nonwestern country (n = 1) No evaluation of user involvement (n = 10) Evaluated person-centred practice in other settings than rehabilitation and occupational therapy (n = 10) Studies included as result (n = 1) Figure 1: PRISMA 2009 flow diagram. dementia. Considering the focus on person-centredness and focused on the social environment in terms of interaction, rehabilitation for people living with dementia, it was sur- communication, and observation. Following these findings, prising to find that only one study was found in a review of we will discuss the social environment, communication and the literature that evaluated person-centredness in re- interaction, and the use of observational skills in un- habilitation for people living with dementia. Moreover, the derstanding people living with dementia. We will suggest article did not explicitly address rehabilitation, but occu- potential ways to evaluate person-centred practice in re- pational therapy. habilitation based on literature from other fields of practices. Person-centredness includes among other components Finally, we will reflect on the concept of rehabilitation for social context and relationships [17]. )e included study people living with dementia. Identification Eligibility Screening Included Journal of Aging Research 5 Table 1: Methodological quality of the included article. Author, Aim Methods design Population setting Result Quality of study based on CASP year, country Strengths: Clear aim. Appropriate design. Transparent data Qualitative. 2 study cases: 2 PWD To discuss the collection and data analysis. Ethics Data collection: (moderate), 2 family potency of the Social therapeutic considered. Clear statement of interview and members, 2 staff. Teitelman social environment interactions can findings. Discussion of evidence observation Setting: )erapeutic et al. [45], in facilitating promote or inhibit and credibility of findings. Data analysis: Van activity sessions in 2010, USA occupational occupational Weaknesses: Unclear if some Manen’s occupational therapy engagement in engagement participants chose not to take part. phenomenological in a memory support PWD No topic guide for interviews. No analysis unit details on how research was explained to participants PWD � people with dementia; CASP � Critical Appraisal Skills Programme. 6.1. Social Environment. Teitelman, Raber, and Watts [45] understand a person’s motivation to engage in activities is focused on the significance of the social environment in especially important as illness progresses, where facilitation determining whether people with dementia engage in pre- of engagement in alternative everyday activities may be ferred occupations. A recent critical interpretive synthesis of necessary [61]. It is here relevant to consider that individual preferences might change over time and there is therefore a meaningful engagement and person-centred residential dementia care concluded similar findings, highlighting that risk that inaccurate assumptions about the preferences of people living with dementia can be made, if not first collaborative partnerships between staff, residents, family members, and significant others were critical in imple- reflecting or clarifying with the person themselves [48, 52]. menting person-centred care [48]. According to empirical Teitelman et al. [45] noted that communication was studies from other fields of practice, not only the social challenged by fluctuating abilities of people living with but also the organisational environment like policies, dementia to express their preferences and take part in shared leadership, routines, architecture, and shared accommoda- decision making. )is has also been observed in other tion can promote or restrict person-centred approaches studies [51, 52]. Using models like the Intentional Re- [49–51]. Inadequate staffing can result in task-oriented care lationship Model may make professionals aware of the instead of person-centred care, and participation of people therapeutic use of self and foster interpersonal encounters [45, 47]. living with dementia can be adjusted, primarily to suit in- stitutional objectives and secondly to fit the resident’s needs and wishes [52, 53]. St-Amant et al. [51] revealed how the 6.3. Use of Observation in Understanding People with Canadian homecare system based decisions related to Dementia. Teitelman et al. [45] described the need for moving into nursing homes on waiting lists and not on the observational skills in communication and in understanding expressed needs of people living with dementia. According the preferences of people living with dementia. )ey found to other studies, involvement of residents with dementia can that the preferences of people living with dementia were be enhanced if leaders are role models and provide often expressed through behaviours demonstrating a desire healthcare professionals with support, acknowledgement, not to participate. )is embodied way of communication is and feedback on their interactional abilities [49, 50]. Similar challenging for healthcare professionals to routinely identify challenges and potentials are raised in OT literature [54, 55] [62]. Drawing on the idea of embodied personhood, Kontos and in literature on healthcare in general [56]. and Naglie [62] advocated the communicative capacity of the body to connect people to each other, fostering sym- 6.2. Communication and Interaction. )e potential power pathetic care and improving person-centred dementia care. Especially when people with dementia show signs of severe dilemmas in communication and interaction described by Teitelman et al. [45] are supported in research from other cognitive impairment, healthcare professionals may better fields of practice and discussed as a barrier to person- achieve person-centred care when recognising that per- centredness [57, 58]. Studies describe care climates, where sonhood persists despite the presence of cognitive impair- healthcare professionals dehumanise people living with ment. )is is, for example, achieved when professionals dementia as people who do not know their own best interest observe and imagine how another person might feel in a [53, 57]. given situation, based on their own bodily experiences [62]. Similar to Teitelman et al. [45], other researches describe To further understand people living with dementia, it is a variety of ways to interact and communicate with people relevant to observe the person’s engagement in everyday activities [63, 64]. A literature review found that people living with dementia [57, 59]. Being fully present and using skills such as empathy, advocacy, and patience may influence living with dementia want to engage in meaningful activities to be connected with self, others, and the environment [61]. the ability and wishes of people living with dementia to participate [50, 60]. )e need for healthcare professionals to In a study of meanings and motives for engagement in self- 6 Journal of Aging Research [6]. Researchers describe a reluctance to use the terminology chosen occupation, it was found that selecting occupations might contribute to personal identity, experience of au- of rehabilitation with regard to multidisciplinary re- habilitative services for people with dementia, because of the tonomy, and increased wellbeing of people living with de- mentia [63]. Research has shown how everyday activities, progressive nature of the illness and distrust in people with like meal times, self-care, or music activities, can be altered dementias abilities to partake in actions like goalsetting. to become therapeutic interactions with high levels of en- Instead, terminologies like function-focused care, reable- gagement and decision making [52, 59]. ment, restorative care, or goal-oriented care are used [6, 69]. Furthermore, there is not yet consensus as to what re- habilitation for people with dementia entails [6]. 6.4. Need for Evaluation. As only one study was found in this Caregivers are often involved in a rehabilitation process review of the literature that evaluated person-centredness in and primary caregivers of people with dementia are essential rehabilitation, we argue that there is a need for further in the daily support [22, 36]. In this study, we focused on the research that evaluates person-centred approaches in re- person with dementia in respect of the person with the habilitation for people living with dementia. )is need is also illness and in line with the current paradigm of person- pertinent in person-centred dementia care in general [29]. centredness. In rehabilitation of people with dementia, it Although rehabilitation and occupational therapy subscribe may have been more appropriate to include evaluations of to person-centredness, it is not imperative that all healthcare proxy respondents. professionals working in rehabilitation or as occupational therapists practice person-centredness [54, 65]. Evaluations of person-centred practice are important, in order for 6.6. Strengths and Limitations. )is study has illustrated person-centredness to continue to be a guiding principle in the lack of research-based knowledge evaluating person- rehabilitation and occupational therapy [20]. centredness in rehabilitation for people living with demen- Future research in person-centred rehabilitation can tia. However, this study’s limitations must be considered learn from research in person-centred dementia care in when interpreting our result. Relevant articles may have been general. In their study, Teitelman and colleagues [45] used missed in the review of the literature, as we excluded literature observational methods as well as interviews with healthcare published prior to the year 2000, research published in other professionals and families. A combination of interview and languages than English, Norwegian, Swedish, and Danish, observational methods are widely used when evaluating and research from nonwestern countries. Furthermore, we person-centred care in dementia [50, 52], including the excluded grey literature which may hold valuable insights observation of interactions in daily activities [50, 52]. Ob- [32], especially in reviews on person-centred approaches [70]. servations can be guided by existing standardised assessment Although we were thorough in our identification of procedures like Dementia Care Mapping [60] or by quali- search terms, relevant synonyms for person-centredness tative methodology such as grounded theory [50, 53] or could have been missed due to heterogeneity of defini- ethnography [51, 57]. Edvardsson, Sandman, and Borell [49] tions and understandings of person-centred approaches used the Swedish version of person-centred care assessment [18, 56]. Furthermore, evaluation may have been defined too tool (PCAT) and the person-centred climate questionnaire narrowly. (PCQ) to measure perceived person-centredness of care and Initially, we viewed the addition of a third search block of environment from the perspectives of healthcare pro- rehabilitation or occupational therapy as a strength to fessionals. Perceived person-centredness of care could also systematically answer the research questions [32, 34]. In be evaluated by residents and family members [49]. hindsight, it may have been a major limitation, as in- Teitelman et al. [45] argued that traditional assessment terventions related to rehabilitation may be named by other and self-report for people with moderate dementia were not terms such as function-focused care [69], restorative care appropriate. Contrary, other researchers state that even [71], reablement [72], or habilitation [73]. people with dementia in advanced stages can participate in It may be a limitation that we did not change the research interviews and express their preferences [66, 67]. In occu- questions or inclusion criteria, when we learnt that only one pational therapy, critics argue that person-centredness, in article could be identified in the review of the literature. We terms of client-centredness, should include evaluations from however regarded it interesting and important to make the perspectives of the patients themselves [20]. Including explicit that when reviewing the literature, using these search the perspectives of people living with dementia in evalua- terms, literature on evaluations of person-centredness in tions of communication is likewise recommended in a recent rehabilitation for people living with dementia was lacking. review [68]. 7. Conclusion 6.5. Rehabilitation and People Living with Dementia. Rehabilitation with the guiding principle of person- Rehabilitation, with person-centredness as a guiding prin- centredness is recommended for people living with de- ciple, has been recommended to people living with dementia mentia in international health standards [8]. )e slim result for decades. )is study suggests that evaluations of person- of this search for evaluations of person-centredness in de- centredness in rehabilitation for people living with dementia mentia rehabilitation may be due to the lack of conceptual in peer-reviewed literature are lacking. Only one article consensus of rehabilitation for people living with dementia could be identified in a review of the literature that evaluated Journal of Aging Research 7 person-centredness in rehabilitation for people living with Abstract] OR Patient Focus[Title/Abstract] OR Patient Focused dementia, and the identified study was in the field of oc- [Title/Abstract] OR Person Centered[Title/Abstract] OR Person cupational therapy. )is gap in research is important be- Centred[Title/Abstract] OR Person Centeredness[Title/Ab- cause the evaluation and documentation of interactions stract] OR Person Centredness[Title/Abstract] OR Client between people living with dementia and healthcare pro- Centered[Title/Abstract] OR Client Centred[Title/Abstract] OR fessionals in rehabilitation are needed to identify effective Client Centeredness[Title/Abstract] OR Client Centredness strategies to pursue and uphold person-centred care. [Title/Abstract] OR Personalised[Title/Abstract] OR Personal- It was discussed whether a lack of consensus of re- ized[Title/Abstract] OR Individualised[Title/Abstract] OR In- habilitation for people living with dementia could account dividualized[Title/Abstract] OR Tailored[Title/Abstract] OR for the lack of identified literature. Given the dearth of Tailor Made[Title/Abstract] OR Tailormade[Title/Abstract] OR research in the area, this article included research in person- User Involvement[Title/Abstract] OR End User Involvement centred dementia care in the discussion, which potentially [Title/Abstract] OR User Participation[Title/Abstract] OR End can inspire practice and research of rehabilitation. To un- User Participation[Title/Abstract] OR Patient Participation [Title/Abstract] OR Patient Involvement[Title/Abstract] OR derstand the complex nature of person-centredness, a va- riety of research methodologies of qualitative and Patient Engagement[Title/Abstract] OR Citizen Involvement quantitative character are recommended for evaluations. [Title/Abstract] OR Citizen Participation[Title/Abstract] OR Consumer Participation[Title/Abstract] OR Consumer In- volvement[Title/Abstract] OR Shared Decision Making[Title/ Appendix Abstract] OR Shared Decision Makings[Title/Abstract] OR According to PRISMA guidelines [42], a full electronic Collaboration[Title/Abstract] OR Partnership[Title/Abstract] search strategy for at least one database, including date of OR Partnerships[Title/Abstract] OR Goal Setting[Title/Ab- search and limits used, must be presented. stract] OR Goal Settings[Title/Abstract] OR Goalsetting[Title/ We used the following search strategy, formulated in Abstract] OR Goalsettings[Title/Abstract])))) AND ((((((Oc- CINAHL and adapted it to all databases searched: Dementia cupational )erapy[Title/Abstract] OR Occupational )erapies ∗ ∗ ∗ [Title/Abstract] OR Rehabilitation[Title/Abstract] OR Re- OR Alzheimer OR Lewy Bod AND Patient Cent OR ∗ ∗ ∗ Patient-Cent OR Patient Focus OR Patient-Focus OR habilitations[Title/Abstract] OR Reablement[Title/Abstract] ∗ ∗ ∗ OR Re-ablement[Title/Abstract] OR Restorative Care[Title/ Person Cent OR Person-Cent OR Client Cent OR Client- Cent OR Personalised OR Personalised OR Individualised Abstract]))) OR rehabilitation center[MeSH Terms]) OR Re- OR Individualised OR Tailored OR Tailor-Made OR Tailor- habilitation[MeSH Terms]) OR Occupational )erapy[MeSH Made OR Tailormade OR User-Involvement OR User- Terms]) AND ((“2000/01/01”[PDat] : “3000/12/31”[PDat]) Involvement OR End User-Involvement OR End-User AND (Danish[lang] OR English[lang] OR Norwegian[lang] OR Involvement OR User-Participation OR User-Participation Swedish[lang])). OR End User-Participation OR End-User Participation OR Patient Participation OR Patient Involvement OR Pa- Disclosure tient Engagement OR Citizen Involvement OR Citizen Par- ticipation OR Consumer Participation OR Consumer )e study was done as part of employment and studies at the Involvement OR Shared Decision-Making∗ OR Shared De- Department of Occupational )erapy and Physiotherapy, cision-Making∗ OR Collaboration OR Partnership∗ OR Goal Zealand University Hospital, Roskilde–Koege, Sygehusvej Setting∗ OR Goal-Setting∗ OR Goalsetting∗ AND Occu- 10, 4000 Roskilde, Denmark; the Department of Public pational )erap∗ OR Rehabilitation∗ OR Reablement OR Re- Health, J.B. Winsløwsvej 9A, University of Southern Den- ablement OR Restorative Care. Limits: Peer reviewed AND mark, 5000 Odense C, Denmark; and the Danish Knowledge year 2000–14.03.2017 AND Danish OR English OR Nor- Centre for Rehabilitation and Palliative Care (REHPA), wegian OR Swedish. Vestergade 17, 5800 Nyborg, Denmark. 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Published: May 2, 2019

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