Health Effects of the Relocation of Patients With Dementia: A Scoping Review to Inform Medical and Policy Decision-Making

Health Effects of the Relocation of Patients With Dementia: A Scoping Review to Inform Medical... Abstract Background and Objectives Research into the relocation (including international relocation) of people with dementia is increasingly important due to the aging population and latest developments in the international politics (including globalization and concerns over international migration). There is need for an overview of the health effects of relocation to facilitate and inform decision- and policy-making regarding these relocations. The aim of this literature review was to provide insight into the physical, psychological, and social consequences of varied types of relocations of older adults suffering from dementia. Research Design and Methods A scoping literature review with a systematic search was performed in PubMed, Web of Science, PsychInfo, JSTOR, and ScienceDirect. The articles dealing with subject of relocation of older adults from 1994 to 2017 were included and analyzed. Methodological quality assessment was performed for all articles. Results Final list included 13 articles. The effects of relocation were discussed in terms of mortality and morbidity. In most studies, the health effects of the relocation of older adults suffering from dementia were negative. A decline in physical, mental, behavioral, and functional well-being was reported. The most recurring effect was a higher level of stress, which is more problematic for patients with dementia. In general, unless it is carefully planned, it is best to avoid changing lives of people with dementia and it is recommended to actively work to reduce their exposure to stress. Discussion and Implications The outcomes of the study suggest definite evidence for the negative effects of relocation of the older adults. This research aims to be used as the support of the legal and medical decisions of relocation of patients with dementia. Dementia, Patient care, Relocation, Law, Policy, Health effects, Review Dementia is a neurodegenerative condition, and its prevalence is rising with the growing older adult population of today’s world. In 2015, the World Health Organization (WHO) estimated the number of people currently living with dementia to be approximately 47 million, an increase from 35.6 million in 2012, and it is expected that numbers will reach as high as 132 million in 2050 (World Health Organization, 2017; World Health Organization & Alzheimer’s Disease International, 2012). Dementia is a broad term uniting several pathologies of similar degenerative nature, of which Alzheimer’s disease is the most well-known. Although younger people can suffer from dementia, it is most common among older adults (Prince et al., 2013). The patients can present with physical, behavioral, and psychological symptoms that are highly diverse and can include wandering, inability to walk, physical aggression, sleeplessness, depression, hallucinations and delusions, and anxiety (Amano, Inuzuka, & Ogihara, 2009; World Health Organization & Alzheimer’s Disease International, 2012). This condition group is an important cause of mortality, annually accounting for 4.36% of all deaths globally (Institute for Health Metrics and Evaluation, 2016) with a median survival time from 3.3 to 11.7 years (Todd, Barr, Roberts, & Passmore, 2013). The symptom presentation and severity vary from person to person and are influenced by a wide range of biopsychosocial factors. The environment can have an important influence on the severity of symptoms (Day, Carreon, & Stump, 2000). As dementia is a degenerative disease, it eventually leads to a loss of ability to live independently (World Health Organization & Alzheimer’s Disease International, 2012), causing a need for relocation to institutions. Relocation has previously been broadly defined as a move from one environment to another (Castle, 2001). In the context of care for older adults, this can entail the following types of move: interinstitutional (between two institutions), intrainstitutional (within one institution), residential (from home to home), and residence to/from institution (Castle, 2001). For the purposes of the current review, relocation will be defined as a move of person with a dementia diagnosis from one physical environment to another, excluding changes in social environment, such as change of caretakers. Relocation of an ill individual is a complex process, which can lead to trauma, referred to as relocation stress: adverse health effects, such as dependency, confusion, anxiety, depression, and withdrawal, caused by (involuntary) relocations (Castle, 2001; Mallick & Whipple, 2000). The term was coined in the 1960s and has since served as a pertinent legal argument in cases regarding transfers (Keville, 1993). In today’s highly globalized society, where migration is ubiquitous and inevitable, this issue has now been actualized and given a new dimension: involuntary, international (or even intercontinental) transfers. This research originates from the specific case of a 68-year-old Surinamese migrant, currently living in the Netherlands in supported housing and suffering from dementia. Seeking shelter in the Netherlands allowed this individual to receive the vital care needed to dramatically improve their quality of life. In fact, this quality of life was in stark contrast to the conditions she faced in Suriname, which previously included homelessness, abuse, and neglect from family members. Due to peculiarities of the bureaucratic procedures regarding patient’s residence status in the Netherlands, there has been a request from the Dutch authorities to move this patient back to Suriname. The question of this individual’s relocation back to Suriname raised concerns with medical staff about the potential harm that would incur given the specific circumstances. This made a literature review of current evidence that could help the patient avoid deportation an imperative. To our knowledge, no similar review has been published in peer-reviewed literature. As cases such as the one described above are becoming more frequent in the world, due to a growing older adult population and a rise in migration worldwide, a review of existing literature was sorely needed. This could give a better understanding of the health effects of relocation of the older adults with dementia, facilitating and informing decision-making regarding these relocations. The review could serve as scientific evidence, supporting interventions and arguments in future cases where relocation may be suggested or prompted. The research question addressed in this study was as follows: What are the known health effects of relocation among older adults with dementia? The aim of this literature review was to provide insight into the physical, psychological, and social consequences of relocating older adults who are suffering from dementia. Methodology Search Strategy To collect and analyze relevant literature about the research topic, a systematic literature search was conducted in April 2017. The search focused on published articles describing relocation of vulnerable older adults, with special attention to articles focusing on people suffering from dementia. Each of the coauthors (F.V.M.R., J.C.E., L.M.D., J.O., E.S.) screened one of the databases: PubMed, Web of Science, PsychInfo, JSTOR, and ScienceDirect (Table 1). To ensure homogeneity, a joint search strategy was created and implemented by all coauthors. The key words for the search syntax were identified by means of brainstorming and by implementing a pearl-growing strategy. The key search terms included ‘Dementia’, ‘Relocation’, ‘Elderly’, and ‘Health effects’, and they were combined with synonyms and health outcome measures such as ‘Morbidity’ and ‘Mortality’. Due to the fact that the initial search including key words international displacement, international relocation and (im)migration has not yielded any relevant results, the decision was made to keep the search broad and not limit it to solely international relocation. The final search syntax was adapted per database, taking their peculiarities into account. This resulted in five different search syntaxes. Furthermore, the search was extended to the bibliographies of selected articles, which were scanned for relevant titles. Table 1. Strategy Search, per Database Database Mesh descriptors Web of Science ((Relocation trauma) OR (relocation stress) OR (relocation) OR (travel) OR (removal) OR (transition)) AND ((death) OR (mortality) OR (morbidity) OR (health consequences) OR (negative effects) OR (negative consequences) OR (health effects)) AND ((dementia) or (Alzheimer)) AND (elderly) JSTOR (dementia) AND ((transfer trauma) OR (relocation stress)) PsychInfo ((relocation stress) OR (transfer trauma)) AND ((delirium) OR (dementia)) AND ((negative health outcomes) OR (management negative health)) AND (elderly) PubMed ((dementia) OR (alzheimers)) AND ((relocation stress) OR (transfer trauma)) AND (elderly) ScienceDirect ((transfer) OR (relocation)) AND ((trauma) OR (stress)) AND ((dementia) OR (Alzheimer)) AND (geriatric) Database Mesh descriptors Web of Science ((Relocation trauma) OR (relocation stress) OR (relocation) OR (travel) OR (removal) OR (transition)) AND ((death) OR (mortality) OR (morbidity) OR (health consequences) OR (negative effects) OR (negative consequences) OR (health effects)) AND ((dementia) or (Alzheimer)) AND (elderly) JSTOR (dementia) AND ((transfer trauma) OR (relocation stress)) PsychInfo ((relocation stress) OR (transfer trauma)) AND ((delirium) OR (dementia)) AND ((negative health outcomes) OR (management negative health)) AND (elderly) PubMed ((dementia) OR (alzheimers)) AND ((relocation stress) OR (transfer trauma)) AND (elderly) ScienceDirect ((transfer) OR (relocation)) AND ((trauma) OR (stress)) AND ((dementia) OR (Alzheimer)) AND (geriatric) View Large Table 1. Strategy Search, per Database Database Mesh descriptors Web of Science ((Relocation trauma) OR (relocation stress) OR (relocation) OR (travel) OR (removal) OR (transition)) AND ((death) OR (mortality) OR (morbidity) OR (health consequences) OR (negative effects) OR (negative consequences) OR (health effects)) AND ((dementia) or (Alzheimer)) AND (elderly) JSTOR (dementia) AND ((transfer trauma) OR (relocation stress)) PsychInfo ((relocation stress) OR (transfer trauma)) AND ((delirium) OR (dementia)) AND ((negative health outcomes) OR (management negative health)) AND (elderly) PubMed ((dementia) OR (alzheimers)) AND ((relocation stress) OR (transfer trauma)) AND (elderly) ScienceDirect ((transfer) OR (relocation)) AND ((trauma) OR (stress)) AND ((dementia) OR (Alzheimer)) AND (geriatric) Database Mesh descriptors Web of Science ((Relocation trauma) OR (relocation stress) OR (relocation) OR (travel) OR (removal) OR (transition)) AND ((death) OR (mortality) OR (morbidity) OR (health consequences) OR (negative effects) OR (negative consequences) OR (health effects)) AND ((dementia) or (Alzheimer)) AND (elderly) JSTOR (dementia) AND ((transfer trauma) OR (relocation stress)) PsychInfo ((relocation stress) OR (transfer trauma)) AND ((delirium) OR (dementia)) AND ((negative health outcomes) OR (management negative health)) AND (elderly) PubMed ((dementia) OR (alzheimers)) AND ((relocation stress) OR (transfer trauma)) AND (elderly) ScienceDirect ((transfer) OR (relocation)) AND ((trauma) OR (stress)) AND ((dementia) OR (Alzheimer)) AND (geriatric) View Large Study Selection Studies were selected based on predetermined inclusion and exclusion criteria. Each article selected individually was discussed among all the authors and finally included in the review when consensus was found. Inclusion criteria are as follows: published in a peer-reviewed journal, written in English, French, and Dutch, the initial search was focused on articles between 2007 and 2017, but due to scarcity of published materials, the search was expanded to 1994 onwards, studies with a focus on the mental and/or physical health consequences relocation, and studies focused on long-term or permanent relocation in older adults. Exclusion criteria are as follows: gray literature, not written in English, French, or Dutch, outside the time scope, Studies focusing exclusively on short-term transitions, that is, to a hospital for acute care, those discussing transitions to palliative, and studies investigating only the relocation frequency in a particular population. Due to the scarcity of the data, there were no exclusions based on the utilized methodology (quantitative, qualitative, and review articles were screened and included if relevant). All the articles identified in the initial syntax search within each database were screened by the respective coauthor individually according to the abovementioned criteria. Same criteria applied at every stage of the screening process. Several steps were taken: First, the articles were screened using only the title and abstract information, followed by an assessment of the full texts. In the initial search, 8,623 articles were found, of which 98 articles were selected based on title and abstract. After assessing full texts according to the inclusion and exclusion criteria, 13 articles were included in the review. An overview of the selection process can be found in Figure 1. Figure 1. View largeDownload slide Flow chart of the selection process. Figure 1. View largeDownload slide Flow chart of the selection process. Quality Assessment The methodological quality of the selected articles was assessed independently by two assessors, using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields (Kmet, Lee, & Cook, 2004) for primary research articles and the International Narrative Systematic Assessment (INSA) tool (La Torre, Backhaus, & Alice, 2015) for literature reviews. Primary research articles were assigned a score between 0 and 1. Articles rated 0.8 and above were considered very good, 0.6–0.79 satisfactory, and 0.59 or below unsatisfactory (see Table 2). The narrative reviews were assigned a score between 0 and 7. Articles with a score of 5 or higher were considered good, whereas a score of less than 5 was deemed unsatisfactory (La Torre et al., 2015). After independent assessments, discrepancies between the assessments were discussed, and consensus reached. No studies were excluded based on quality scores. Table 2. Assessment Score Articles Article Score assessor 1 Score assessor 2 Score: Consensus Bellantonio et al. (2008) 0.71 0.78 0.64 Morgan and Stewart (1999) 0.9 0.85 0.8 Morse (2000) 0.3 0.35 0.3 Brown et al. (2012) 0.91 1.0 1.0 Orrell and Bebbington (1998) 0.82 0.90 0.82 McAuslane and Sperlinger (1994) 0.64 0.68 0.68 Mallick and Whipple (2000) 0.5 0.59 0.55 Mirotznik and Kamp (2000) 0.82 0.82 0.86 Falk et al. (2011) 0.88 0.83 0.83 Van den Block et al. (2015) 0.95 0.77 0.95 Walker et al. (2007) 0.8 0.9 0.8 Article Score assessor 1 Score assessor 2 Score: Consensus Bellantonio et al. (2008) 0.71 0.78 0.64 Morgan and Stewart (1999) 0.9 0.85 0.8 Morse (2000) 0.3 0.35 0.3 Brown et al. (2012) 0.91 1.0 1.0 Orrell and Bebbington (1998) 0.82 0.90 0.82 McAuslane and Sperlinger (1994) 0.64 0.68 0.68 Mallick and Whipple (2000) 0.5 0.59 0.55 Mirotznik and Kamp (2000) 0.82 0.82 0.86 Falk et al. (2011) 0.88 0.83 0.83 Van den Block et al. (2015) 0.95 0.77 0.95 Walker et al. (2007) 0.8 0.9 0.8 View Large Table 2. Assessment Score Articles Article Score assessor 1 Score assessor 2 Score: Consensus Bellantonio et al. (2008) 0.71 0.78 0.64 Morgan and Stewart (1999) 0.9 0.85 0.8 Morse (2000) 0.3 0.35 0.3 Brown et al. (2012) 0.91 1.0 1.0 Orrell and Bebbington (1998) 0.82 0.90 0.82 McAuslane and Sperlinger (1994) 0.64 0.68 0.68 Mallick and Whipple (2000) 0.5 0.59 0.55 Mirotznik and Kamp (2000) 0.82 0.82 0.86 Falk et al. (2011) 0.88 0.83 0.83 Van den Block et al. (2015) 0.95 0.77 0.95 Walker et al. (2007) 0.8 0.9 0.8 Article Score assessor 1 Score assessor 2 Score: Consensus Bellantonio et al. (2008) 0.71 0.78 0.64 Morgan and Stewart (1999) 0.9 0.85 0.8 Morse (2000) 0.3 0.35 0.3 Brown et al. (2012) 0.91 1.0 1.0 Orrell and Bebbington (1998) 0.82 0.90 0.82 McAuslane and Sperlinger (1994) 0.64 0.68 0.68 Mallick and Whipple (2000) 0.5 0.59 0.55 Mirotznik and Kamp (2000) 0.82 0.82 0.86 Falk et al. (2011) 0.88 0.83 0.83 Van den Block et al. (2015) 0.95 0.77 0.95 Walker et al. (2007) 0.8 0.9 0.8 View Large Data Extraction and Analysis To analyze the selected articles, an extraction table was made (see Supplementary Tables 1–3). The categories were “general information,” “introduction,” “sample,” “controls,” “methodology,” “results,” and “results text.” Each category consisted of multiple subquestions that provided more detailed information. The extraction table was completed by the individual coauthors and checked again by other coauthors. Results After rigorous examination of the full texts, 13 articles were included. General information about the articles can be found in Table 3. The studies varied in methodology: one randomized trial, one single case study, two cohort studies, two case–control studies, two cross-sectional studies, one pretest–post-test experimental comparison, one pretest–post-test mixed-method study, two literature reviews, and one international mortality follow-back study. More detailed methodological summaries of each article can be found in Supplementary Tables 1 and 2. The selected studies were published between 1994 and 2015, and most studies were conducted in Finland, America, United Kingdom, and international comparative studies between four European countries. The methodological quality was considered very good in seven of the articles (Brown et al., 2012; Falk, Wijk, & Persson, 2011; Mirotznik & Kamp, 2000; Morgan & Stewart, 1999; Orrell & Bebbington, 1998; Van den Block et al., 2015; Walker, Curry, & Hogstel, 2007), satisfactory in two of the articles (Bellantonio et al., 2008; McAuslane & Sperlinger, 1994), and unsatisfactory in four of the articles (Kao, Travis, & Acton, 2004; Mallick & Whipple, 2000; Morse, 2000; Verkade, van Meijel, Brink, Schmitz, & Peijnenburg, 2007). Table 3. General Study Characteristics Reference Intro Aim Type of relocation Target population 1 Bellantonio et al. (2008) To determine whether a multidisciplinary team intervention minimizes unanticipated transitions from assisted living for persons with dementia. Interinstitutional Older adults with dementia who relocated to assisted living 2 Brown et al. (2012) This study examined the effects of evacuation during Hurricane Gustav on residents who were cognitively impaired. Interinstitutional Cognitively impaired people in a nursing home facility who were exposed to relocation because of storm treat 3 Morgan and Stewart (1999) This article describes results of the qualitative component of a larger research project examining environment–behavior relationships in dementia care settings. Intrainstitutional People in contact with older adults with dementia 4 Orrell and Bebbington (1998) The purpose of this study was to investigate two hypotheses: (a) Life events in dementia will be associated with mild/moderate rather than severe cognitive impairment. (b) Life events will increase the risk of admission in dementia of mild/moderate cognitive impairment. Residence to institution Senile older patients suffering from dementia 5 McAuslane and Sperlinger (1994) This study aimed: (i) to evaluate changes in residents’ functioning and behavior resulting from the move and (ii) to assess the impact of the move on the nursing staff who were moving with the patients. Interinstitutional Older adults with dementia and their nursing staff 6 Mallick and Whipple (2000) To validate the presence of some defining characteristics of relocation stress syndrome in a group of long-term care residents relocated en masse to a new facility. Interinstitutional Older residents 7 Mirotznik and Kamp (2000) This study investigated whether cognitively impaired nursing home residents are at particular risk of experiencing harmful effects during a mass, intrainstitutional, interbuilding relocation. Intrainstitutional, interbuilding Long-term nursing home residents 8 Verkade et al. (2007) To study what is viewed as agitation in persons suffering from dementia, what causes have been found for this, and what psychosocial intervention strategies are available to nurses and caregivers. Not specified Persons suffering from dementia 9 Falk et al. (2011) The aim of this study was to examine the effects of that relocation on the resident quality of life, well-being, and perceived person-centeredness, as well as to describe their experiences in relation to the relocation. Interinstitutional Elderly institution residents 10 Van den Block et al. (2015) The objective of this study was to use existing nationwide representative networks of general practitioners in Belgium, the Netherlands, Spain, and Italy to investigate the places of care in the final 3 months of life, the frequency of transitions between care settings, and the most frequently occurring final transitions and the reasons for these transitions. Residence to institution, interinstitutional, intrainstitutional Individuals aged 18 or older 11 Morse (2000) Not specified Residence to institution One 84-year-old male 12 Walker et al. (2007) The aim of this study was to verify the nature and kind of distress associated with relocation stress syndrome, to validate diagnostic criteria for relocation stress syndrome among older adults residing in nursing homes and assisted-living facilities, and to determine whether relocation stress syndrome manifests differently among residents of one kind of facility versus another. Residence to institution Older adults in two rural counties in north central Texas 13 Kao et al. (2004) This article offers suggestions for interventions that can be generalized across diverse situations, including admissions from community-based sites and home care, and intrainstitutional and transinstitutional relocation. Residence to institution, interinstitutional, intrainstitutional N/A Reference Intro Aim Type of relocation Target population 1 Bellantonio et al. (2008) To determine whether a multidisciplinary team intervention minimizes unanticipated transitions from assisted living for persons with dementia. Interinstitutional Older adults with dementia who relocated to assisted living 2 Brown et al. (2012) This study examined the effects of evacuation during Hurricane Gustav on residents who were cognitively impaired. Interinstitutional Cognitively impaired people in a nursing home facility who were exposed to relocation because of storm treat 3 Morgan and Stewart (1999) This article describes results of the qualitative component of a larger research project examining environment–behavior relationships in dementia care settings. Intrainstitutional People in contact with older adults with dementia 4 Orrell and Bebbington (1998) The purpose of this study was to investigate two hypotheses: (a) Life events in dementia will be associated with mild/moderate rather than severe cognitive impairment. (b) Life events will increase the risk of admission in dementia of mild/moderate cognitive impairment. Residence to institution Senile older patients suffering from dementia 5 McAuslane and Sperlinger (1994) This study aimed: (i) to evaluate changes in residents’ functioning and behavior resulting from the move and (ii) to assess the impact of the move on the nursing staff who were moving with the patients. Interinstitutional Older adults with dementia and their nursing staff 6 Mallick and Whipple (2000) To validate the presence of some defining characteristics of relocation stress syndrome in a group of long-term care residents relocated en masse to a new facility. Interinstitutional Older residents 7 Mirotznik and Kamp (2000) This study investigated whether cognitively impaired nursing home residents are at particular risk of experiencing harmful effects during a mass, intrainstitutional, interbuilding relocation. Intrainstitutional, interbuilding Long-term nursing home residents 8 Verkade et al. (2007) To study what is viewed as agitation in persons suffering from dementia, what causes have been found for this, and what psychosocial intervention strategies are available to nurses and caregivers. Not specified Persons suffering from dementia 9 Falk et al. (2011) The aim of this study was to examine the effects of that relocation on the resident quality of life, well-being, and perceived person-centeredness, as well as to describe their experiences in relation to the relocation. Interinstitutional Elderly institution residents 10 Van den Block et al. (2015) The objective of this study was to use existing nationwide representative networks of general practitioners in Belgium, the Netherlands, Spain, and Italy to investigate the places of care in the final 3 months of life, the frequency of transitions between care settings, and the most frequently occurring final transitions and the reasons for these transitions. Residence to institution, interinstitutional, intrainstitutional Individuals aged 18 or older 11 Morse (2000) Not specified Residence to institution One 84-year-old male 12 Walker et al. (2007) The aim of this study was to verify the nature and kind of distress associated with relocation stress syndrome, to validate diagnostic criteria for relocation stress syndrome among older adults residing in nursing homes and assisted-living facilities, and to determine whether relocation stress syndrome manifests differently among residents of one kind of facility versus another. Residence to institution Older adults in two rural counties in north central Texas 13 Kao et al. (2004) This article offers suggestions for interventions that can be generalized across diverse situations, including admissions from community-based sites and home care, and intrainstitutional and transinstitutional relocation. Residence to institution, interinstitutional, intrainstitutional N/A Note: N/A, not applicable. View Large Table 3. General Study Characteristics Reference Intro Aim Type of relocation Target population 1 Bellantonio et al. (2008) To determine whether a multidisciplinary team intervention minimizes unanticipated transitions from assisted living for persons with dementia. Interinstitutional Older adults with dementia who relocated to assisted living 2 Brown et al. (2012) This study examined the effects of evacuation during Hurricane Gustav on residents who were cognitively impaired. Interinstitutional Cognitively impaired people in a nursing home facility who were exposed to relocation because of storm treat 3 Morgan and Stewart (1999) This article describes results of the qualitative component of a larger research project examining environment–behavior relationships in dementia care settings. Intrainstitutional People in contact with older adults with dementia 4 Orrell and Bebbington (1998) The purpose of this study was to investigate two hypotheses: (a) Life events in dementia will be associated with mild/moderate rather than severe cognitive impairment. (b) Life events will increase the risk of admission in dementia of mild/moderate cognitive impairment. Residence to institution Senile older patients suffering from dementia 5 McAuslane and Sperlinger (1994) This study aimed: (i) to evaluate changes in residents’ functioning and behavior resulting from the move and (ii) to assess the impact of the move on the nursing staff who were moving with the patients. Interinstitutional Older adults with dementia and their nursing staff 6 Mallick and Whipple (2000) To validate the presence of some defining characteristics of relocation stress syndrome in a group of long-term care residents relocated en masse to a new facility. Interinstitutional Older residents 7 Mirotznik and Kamp (2000) This study investigated whether cognitively impaired nursing home residents are at particular risk of experiencing harmful effects during a mass, intrainstitutional, interbuilding relocation. Intrainstitutional, interbuilding Long-term nursing home residents 8 Verkade et al. (2007) To study what is viewed as agitation in persons suffering from dementia, what causes have been found for this, and what psychosocial intervention strategies are available to nurses and caregivers. Not specified Persons suffering from dementia 9 Falk et al. (2011) The aim of this study was to examine the effects of that relocation on the resident quality of life, well-being, and perceived person-centeredness, as well as to describe their experiences in relation to the relocation. Interinstitutional Elderly institution residents 10 Van den Block et al. (2015) The objective of this study was to use existing nationwide representative networks of general practitioners in Belgium, the Netherlands, Spain, and Italy to investigate the places of care in the final 3 months of life, the frequency of transitions between care settings, and the most frequently occurring final transitions and the reasons for these transitions. Residence to institution, interinstitutional, intrainstitutional Individuals aged 18 or older 11 Morse (2000) Not specified Residence to institution One 84-year-old male 12 Walker et al. (2007) The aim of this study was to verify the nature and kind of distress associated with relocation stress syndrome, to validate diagnostic criteria for relocation stress syndrome among older adults residing in nursing homes and assisted-living facilities, and to determine whether relocation stress syndrome manifests differently among residents of one kind of facility versus another. Residence to institution Older adults in two rural counties in north central Texas 13 Kao et al. (2004) This article offers suggestions for interventions that can be generalized across diverse situations, including admissions from community-based sites and home care, and intrainstitutional and transinstitutional relocation. Residence to institution, interinstitutional, intrainstitutional N/A Reference Intro Aim Type of relocation Target population 1 Bellantonio et al. (2008) To determine whether a multidisciplinary team intervention minimizes unanticipated transitions from assisted living for persons with dementia. Interinstitutional Older adults with dementia who relocated to assisted living 2 Brown et al. (2012) This study examined the effects of evacuation during Hurricane Gustav on residents who were cognitively impaired. Interinstitutional Cognitively impaired people in a nursing home facility who were exposed to relocation because of storm treat 3 Morgan and Stewart (1999) This article describes results of the qualitative component of a larger research project examining environment–behavior relationships in dementia care settings. Intrainstitutional People in contact with older adults with dementia 4 Orrell and Bebbington (1998) The purpose of this study was to investigate two hypotheses: (a) Life events in dementia will be associated with mild/moderate rather than severe cognitive impairment. (b) Life events will increase the risk of admission in dementia of mild/moderate cognitive impairment. Residence to institution Senile older patients suffering from dementia 5 McAuslane and Sperlinger (1994) This study aimed: (i) to evaluate changes in residents’ functioning and behavior resulting from the move and (ii) to assess the impact of the move on the nursing staff who were moving with the patients. Interinstitutional Older adults with dementia and their nursing staff 6 Mallick and Whipple (2000) To validate the presence of some defining characteristics of relocation stress syndrome in a group of long-term care residents relocated en masse to a new facility. Interinstitutional Older residents 7 Mirotznik and Kamp (2000) This study investigated whether cognitively impaired nursing home residents are at particular risk of experiencing harmful effects during a mass, intrainstitutional, interbuilding relocation. Intrainstitutional, interbuilding Long-term nursing home residents 8 Verkade et al. (2007) To study what is viewed as agitation in persons suffering from dementia, what causes have been found for this, and what psychosocial intervention strategies are available to nurses and caregivers. Not specified Persons suffering from dementia 9 Falk et al. (2011) The aim of this study was to examine the effects of that relocation on the resident quality of life, well-being, and perceived person-centeredness, as well as to describe their experiences in relation to the relocation. Interinstitutional Elderly institution residents 10 Van den Block et al. (2015) The objective of this study was to use existing nationwide representative networks of general practitioners in Belgium, the Netherlands, Spain, and Italy to investigate the places of care in the final 3 months of life, the frequency of transitions between care settings, and the most frequently occurring final transitions and the reasons for these transitions. Residence to institution, interinstitutional, intrainstitutional Individuals aged 18 or older 11 Morse (2000) Not specified Residence to institution One 84-year-old male 12 Walker et al. (2007) The aim of this study was to verify the nature and kind of distress associated with relocation stress syndrome, to validate diagnostic criteria for relocation stress syndrome among older adults residing in nursing homes and assisted-living facilities, and to determine whether relocation stress syndrome manifests differently among residents of one kind of facility versus another. Residence to institution Older adults in two rural counties in north central Texas 13 Kao et al. (2004) This article offers suggestions for interventions that can be generalized across diverse situations, including admissions from community-based sites and home care, and intrainstitutional and transinstitutional relocation. Residence to institution, interinstitutional, intrainstitutional N/A Note: N/A, not applicable. View Large When synthesizing the results, certain common themes were found: increased mortality (four articles), negative physical effects of relocation (three articles), negative psychological and/or social effects of relocation (seven articles), and possible modifiers of the effects of relocation (three articles). For detailed result presentation, we refer to Supplementary Table 3. Mortality Four studies (Bellantonio et al., 2008; Brown et al., 2012; Falk et al., 2011; Van den Block et al., 2015) found an increased mortality among relocated individuals. A prospective cohort study by Brown and colleagues (2012) investigated the risks associated with interinstitutional relocation by examining records of 21,255 nursing home residents who resided within risk areas of being hit by Hurricane Gustav in the United States. Study showed that 5,036 of the residents relocated during the storm, had drastically higher mortality rates (218% higher than nonevacuated residents at 30 days and 158% higher at 90 days). In a pretest–post-test mixed-method study conducted by Falk and colleagues (2011) in Gothenburg, Sweden, 74 residents were interinstitutionally relocated and 81 residents that were not relocated served as an equivalent reference group. A tendency toward higher mortality was found among movers compared with non-movers (24% compared with 11%) also in this study. Bellantonio and colleagues (2008) built on the assumption that relocation has negative effects. They conducted a randomized trial, investigating whether a multidisciplinary intervention consisting of different health professionals’ examinations and treatment recommendations prerelocation could minimize the adverse effects. In the trial, 100 persons with dementia, who relocated from home to assisted-living facilities in Connecticut, were included, 48 of which were assigned the intervention. The study showed a trend toward decreased mortality and hospitalization within the intervention group. In addition, an international mortality follow-back study examining records from 4,791 individuals found that relocations (of any kind, including hopitalization) were highly prevalent during the last 3 months of life among residents in four European countries: Belgium, the Netherlands, Italy, and Spain (Van den Block et al., 2015). Important to note that this study excluded the data from those patients who died “suddenly and totally unexpectedly” in all participating countries and those who had died in specialist nursing homes in the Netherlands. However, one should be careful when interpreting the outcomes of the study as high relocation rates could be linked to the deteriorating health status of the patients. Another finding of the study was a suggestion that patients, residing at home, were most likely to experience one or multiple transitions in the last 3 months of their life. Morbidity Nine studies found that relocation could lead to negative effects on a physical, psychological, and/or social dimension in the patient’s life (Bellantonio et al., 2008; Brown et al., 2012; Falk et al., 2011; Kao et al., 2004; Mirotznik & Kamp, 2000; Morgan & Stewart, 1999; Morse, 2000; Orrell & Bebbington, 1998; Van den Block et al., 2015). Physical Effects Three of the studies found a decline in physical well-being related to relocation (Kao et al., 2004; Mirotznik & Kamp, 2000; Morse, 2000). Mirotznik and Kamp (2000) conducted a pretest–post-test experimental-comparison group design study among 788 facility residents in Brooklyn, New York, where they investigated whether cognitively impaired individuals were at special risk of experiencing harmful effects of interinstitutional and interbuilding relocation, finding it not to be moderated by cognitive status. They did, however, find that movers in general exhibited a greater physical decline than non-movers (looking at number of diagnosed diseases, number of conditions, signs and symptoms, and number of hospital admissions). Morse (2000) presented a single case of an older adult requiring a relocation into a nursing home, following physical decline. Despite the initial seemingly positive effects on physical health as the man was being treated for his physical decline, the man displayed concrete physical, as well as psychological and social, symptoms of relocation stress, for example, heart palpitations, anxiety, withdrawal vomiting, and anorexia nervosa. Psychological and/or Social Effects Relocation was also found to result in decreased psychological and social well-being in seven articles (Falk et al., 2011; Kao et al., 2004; Mirotznik & Kamp, 2000; Morgan & Stewart, 1999; Morse, 2000; Orrell & Bebbington, 1998; Verkade et al., 2007). Morgan and Stewart (1999) in their quasi-experimental, nonequivalent comparison group design with repeated measures of an intrainstitutional relocation, and Verkade and colleagues (2007), who conducted a qualitative literature review, presented results suggesting that environmental changes can cause agitated behavior or even trauma and that nonhomelike settings can cause anxiety. They showed the effects of relocation on perceived quality of life, degree of anxiety, psychosocial functioning, and tiredness. This is in line with a narrative literature review on residence to institution, interinstitutional, and intrainstitutional relocation by Kao and colleagues (2004), in which it was stated that “[…] ‘migrations’ across counties or states add stress and burden to an already disruptive event in the lives of older adults and their family members” (McAuley & Travis, as cited in Kao et al., 2004, p. 14). Orrell and Bebbington (1998) in a case–control comparison study of relocations from home to an institution further found that individuals with dementia may be particularly sensitive to the effects of psychosocial stress linked to major life events. This study offered a cautious support to the hypothesis that stressful life events are more common and have more powerful influence on cognitive state of patients with dementia with mild to moderate impairment by investigating the correlation between cognitive impairment (measured by, among others, Acute Deuteriation scale) and self-reported major life events. Mirotznik and Kamp (2000) found, in addition to the physical effects of relocation, that movers declined more psychosocially (judging by the measurements of cognitive status, functional capacity derived from the Minimum Data Set Plus [MDS1]: Cognitive Performance Scale and Sense of Initiative/Involvement) at long-term follow-up than non-movers. Modifiers The extent of participation and control that the individual has in the decision-making process was something frequently recurring as a modifying factor for adverse effects of relocation. Three studies implementing different study designs (narrative literature review, single case study, and cross-sectional, respectively; Kao et al., 2004; Morse, 2000; Walker et al., 2007) found this to be a strong determining factor for how the individual would cope with relocation. Limited participation in the decision-making process resulted in an individual being more prone to relocation stress syndrome, whereas a greater extent of autonomy in the process could minimize the adverse effects. In addition, whether relocation occurred en masse (staff and residents of, e.g., a unit moving together) and whether any preparations for the relocation had been undertaken were mentioned as possible outcome modifiers (Falk et al., 2011; Mallick & Whipple, 2000; McAuslane & Sperlinger, 1994; Mirotznik & Kamp, 2000). Studies With Different Outcomes Although the majority of the studies showed that relocation had negative effects on individuals, three of the studies (Mallick & Whipple, 2000; McAuslane & Sperlinger, 1994; Walker et al., 2007) presented moderately conflicting results. The case–control study by McAuslane and Sperlinger (1994) showed that less behavioral problems were present among 19 interinstitutional movers than among 17 non-movers, although the author argues that this might be due to the improved environment the new institution offered, as well as the move occurring en masse, minimizing disruption in the residents’ lives. Walker and colleagues (2007) conducted an interview study with eight nursing home residents and eight assisted-living facility residents, finding that relocation was not perceived as stressful among older adults relocating from home to two institutions in Texas. They concluded that incidence of relocation stress may be overestimated and relocation stress syndrome possibly is a superfluous diagnosis. Finally, Mallick and Whipple (2000) found no difference between the groups in their prospective cohort study of an interinstitutional relocation; however, they only examined effects on dependency, confusion, anxiety, depression, and withdrawal and stated that effects may be present on other characteristics of relocation stress syndrome. They also mentioned that the syndrome might not be applicable to group moves, but did not discard the possibility that it may be in individual cases. Discussion Dementia is a highly prevalent disease that forms an increasing problem worldwide. Within this review, the identified articles focused on relocation within nursing homes or from home to institutionalized care facilities and none of them discussed international relocations. As shown above, most studies found negative health effects of a relocation of older adults suffering from dementia. From the seven studies that were rated as “very good” in the assessment (Table 2), six reported an increase in morbidity and mortality after relocation (Brown et al., 2012; Falk et al., 2011; Mirotznik & Kamp, 2000; Morgan & Stewart, 1999; Orrell & Bebbington, 1998; Van den Block et al., 2015). Older adults who experienced a move showed physical and psychological decline and both mortality and morbidity rates increased. The seventh study by Walker and colleagues (2007) reported positive effects of a relocation to a facility that catered the needs of the patients. Furthermore, the relocatees were involved in the decision-making process, which lowered the stress experienced by the move. Four elements that determine the severity of the effects of relocation of older adults with dementia can be identified: the health of the patient, the patient involvement in the move, the similarities between the old and new situation, and continuity of care. They are divided into factors that may have negative impact on patients who are relocated and factors that could have a positive impact. Negative Impact The first determining factor of the severity of the effects of relocation on an individual with dementia is the pretransitional physical and mental well-being of the patient. Although all patients in a nursing home are at risk for the negative effects of a move, persons suffering from dementia can experience more suffering. Life events, such as relocations, have a bigger impact on them, leading to higher stress levels and possibly negative health outcomes (Brown et al., 2012; Orrell & Bebbington, 1998). As they often have difficulties verbalizing their needs and understanding changing situations, they are in need of an undisrupted daily schedule (Bellantonio et al., 2008; Brown et al., 2012; Williams et al., 2016), which a relocation to a new environment is likely to jeopardize. Although most studies underline the negative effects specifically for persons suffering from dementia, one study was found that stated that cognitive impairments did not result in “unusual risk for negative effects of relocation” but that the move caused physical degradation in all residents, no matter their cognitive well-being (Mirotznik & Kamp, 2000). The second factor that has a negative impact on patients with dementia who are relocated is abrupt changes in their schedule and continuation of care. As people suffering from dementia are in need of structured daily activities, continuous caregivers, and a fixed schedule, a disruption of this due to a relocation can be harmful (Brown et al., 2012; McAuslane & Sperlinger, 1994), which is also consistent with results from, for example, a study by Umegaki and colleagues (2016). The negative effects on the physical and mental well-being can be disastrous if the change is radical (Kao et al., 2004). Positive Impact The literature review shows that the extent to which patients are involved in the decision-making process of the relocation could have an influence on the impact of the relocation. When patients are involved in the decision-making process around the move, their self-reported quality of life increases and stress that results from the move is lowered (Fetherstonhaugh, Tarzia, & Nay, 2013; Kao et al., 2004; Morse, 2000; Walker et al., 2007). Furthermore, participation in a preparation program can increase the resilience of patients and lower its negative effects (Brown et al., 2012; Castle, 2001). Yet, although these studies point out an important factor, some uncertainty regarding this remains. First, there is a lack of evaluation and research on what kind of preparation programs are most beneficial. Second, due to the cognitive impairments of dementia, it is uncertain to what extent a patient can be prepared and be part of the decision-making process (Brown et al., 2012; Fetherstonhaugh et al., 2013). Another factor that could positively affect the effect of relocation is the similarity between the old and new situation. When patients are relocated together with their staff, furniture, and their roommates, this can positively influence the presentation of symptoms, for example, lower levels of stress (Mallick, & Whipple, 2000; McAuslane & Sperlinger, 1994). If patients need to be relocated, it is proven to be best if the new environment is mostly similar to their previous environment. The authors did, however, describe the studied move as the “best case scenario,” in which residents had been prepared for the relocation over a period of 6 months and were relocated en masse, together with the staff and their belongings (Mirotznik & Kamp, 2000). This underlines the importance of the environment, as supported by Day and colleagues (2000). A positive effect of relocation is, therefore, more likely if the environment of the patient moves along with him/her, resulting in less abrupt changes. Moreover, if there is an improvement from the previous situation and it is a permanent solution, this can also have positive effects on the health outcomes of the relocatees (McAuslane & Sperlinger, 1994; Verkade et al., 2007). In summary, the most positive outcome was found in a relocation where residents were moved from a hospital-based ward to a community-based ward, together with their staff, furniture, and other patients. In this case, there was a continuity of care and relationships, and the environment improved (McAuslane & Sperlinger, 1994; Mirotznik & Kamp, 2000). Most positive effects were found in relocations that were well-prepared, intended for long-term and with little disruption of daily activities for the older adults. The most negative effects came from temporary relocations where older adults had to experience a second move back to the first situation. The situation that is most dangerous for older adults suffering from dementia is a temporary involuntary move with a radical disruption from the continuity of care and the situation with which the patient is familiar, as in the case that initiated this literature review. This can result in relocation stress or trauma, which can lead to psychosocial symptoms and physical decline (Morse, 2000). In one study, this resulted in a 218% increase of mortality within 30 days of the move and a 158% increase in mortality after 90 days, compared with the control group (Brown et al., 2012). Conclusion Despite the fact that this review was initiated to support the case of an older adult facing international relocation, no literature specifically on the international relocation was identified. This shows a crucial gap in the existing literature, despite the fact that in 2015 there were 244 million international migrants in the world (10% more than in 2010; Triandafyllidou, 2018). Moreover, studies from different countries showed that migration is associated with higher risks of morbidity and mortality (Brussaard, van Erp-Baart, Brants, Hulshof, & Löwik, 2001; Jervelund et al., 2017). In most studies identified in this review, the health effects of any relocation of older adults suffering from dementia were negative. A decline in physical, mental, behavioral, and functional well-being was reported (Bellantonio et al., 2008; Falk et al., 2011; Mirotznik & Kamp, 2000; Morse, 2000; Walker et al., 2007). The most recurring effect was a higher level of stress, which is more problematic for patients with dementia (Orrell & Bebbington, 1998), as it has major effects on their physical and mental well-being. Older adults who were relocated, were diagnosed with more diseases, symptoms and hospital admissions than others with similar conditions who did not move (Mirotznik & Kamp, 2000). In general, unless it is carefully planned and with as little disruption from the previous situation as possible, it is best to avoid changing lives of people with dementia be it a move from one home for older adults to another or an international deportation. In addition, it was noted that stress can potentially be seen as a link between changes in the direct environment and adverse health effects; thus, it is recommended to actively work to reduce their exposure to stress. The relocation decision needs to carefully balance the possible positive and negative effects on patient’s physical and mental health and well-being. On the one hand, one needs to consider the direct medical needs of the patients. However, on the other hand, it needs to be clear that the medical needs are not the only ones patients have, as psychological well-being can also have a direct impact on health status. Moreover, at times, the medical and the social/psychological needs of the patient can be in conflict with one another. To make such a decision, responsible person(s) need to be in possession of the most up-to-date research findings. However, the relatively low number of identified articles seems to suggest a possible lack of awareness among the health professionals, policy-makers, and researchers. Supplementary Material Supplementary data are available at The Gerontologist online. Funding None reported. Conflict of Interest None reported. Acknowledgments We thank Gerrianne Smits from the Dokters van de Wereld and Gerd Beckers for initiating this research and using it to improve lives of the patients. F. V. M. Ryman and J. C. Erisman contributed equally to this study. References Amano , N. , Inuzuka , S. , & Ogihara , T . ( 2009 ). Behavioral and psychological symptoms of dementia and medical treatment . Psychogeriatrics , 9 , 45 – 49 . doi: 10.1111/j.1479-8301.2009.00284.x Google Scholar CrossRef Search ADS PubMed Bellantonio , S. , Kenny , A. M. , Fortinsky , R. H. , Kleppinger , A. , Robison , J. , Gruman , C. ,… Trella , P. M . ( 2008 ). 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Health Effects of the Relocation of Patients With Dementia: A Scoping Review to Inform Medical and Policy Decision-Making

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Abstract

Abstract Background and Objectives Research into the relocation (including international relocation) of people with dementia is increasingly important due to the aging population and latest developments in the international politics (including globalization and concerns over international migration). There is need for an overview of the health effects of relocation to facilitate and inform decision- and policy-making regarding these relocations. The aim of this literature review was to provide insight into the physical, psychological, and social consequences of varied types of relocations of older adults suffering from dementia. Research Design and Methods A scoping literature review with a systematic search was performed in PubMed, Web of Science, PsychInfo, JSTOR, and ScienceDirect. The articles dealing with subject of relocation of older adults from 1994 to 2017 were included and analyzed. Methodological quality assessment was performed for all articles. Results Final list included 13 articles. The effects of relocation were discussed in terms of mortality and morbidity. In most studies, the health effects of the relocation of older adults suffering from dementia were negative. A decline in physical, mental, behavioral, and functional well-being was reported. The most recurring effect was a higher level of stress, which is more problematic for patients with dementia. In general, unless it is carefully planned, it is best to avoid changing lives of people with dementia and it is recommended to actively work to reduce their exposure to stress. Discussion and Implications The outcomes of the study suggest definite evidence for the negative effects of relocation of the older adults. This research aims to be used as the support of the legal and medical decisions of relocation of patients with dementia. Dementia, Patient care, Relocation, Law, Policy, Health effects, Review Dementia is a neurodegenerative condition, and its prevalence is rising with the growing older adult population of today’s world. In 2015, the World Health Organization (WHO) estimated the number of people currently living with dementia to be approximately 47 million, an increase from 35.6 million in 2012, and it is expected that numbers will reach as high as 132 million in 2050 (World Health Organization, 2017; World Health Organization & Alzheimer’s Disease International, 2012). Dementia is a broad term uniting several pathologies of similar degenerative nature, of which Alzheimer’s disease is the most well-known. Although younger people can suffer from dementia, it is most common among older adults (Prince et al., 2013). The patients can present with physical, behavioral, and psychological symptoms that are highly diverse and can include wandering, inability to walk, physical aggression, sleeplessness, depression, hallucinations and delusions, and anxiety (Amano, Inuzuka, & Ogihara, 2009; World Health Organization & Alzheimer’s Disease International, 2012). This condition group is an important cause of mortality, annually accounting for 4.36% of all deaths globally (Institute for Health Metrics and Evaluation, 2016) with a median survival time from 3.3 to 11.7 years (Todd, Barr, Roberts, & Passmore, 2013). The symptom presentation and severity vary from person to person and are influenced by a wide range of biopsychosocial factors. The environment can have an important influence on the severity of symptoms (Day, Carreon, & Stump, 2000). As dementia is a degenerative disease, it eventually leads to a loss of ability to live independently (World Health Organization & Alzheimer’s Disease International, 2012), causing a need for relocation to institutions. Relocation has previously been broadly defined as a move from one environment to another (Castle, 2001). In the context of care for older adults, this can entail the following types of move: interinstitutional (between two institutions), intrainstitutional (within one institution), residential (from home to home), and residence to/from institution (Castle, 2001). For the purposes of the current review, relocation will be defined as a move of person with a dementia diagnosis from one physical environment to another, excluding changes in social environment, such as change of caretakers. Relocation of an ill individual is a complex process, which can lead to trauma, referred to as relocation stress: adverse health effects, such as dependency, confusion, anxiety, depression, and withdrawal, caused by (involuntary) relocations (Castle, 2001; Mallick & Whipple, 2000). The term was coined in the 1960s and has since served as a pertinent legal argument in cases regarding transfers (Keville, 1993). In today’s highly globalized society, where migration is ubiquitous and inevitable, this issue has now been actualized and given a new dimension: involuntary, international (or even intercontinental) transfers. This research originates from the specific case of a 68-year-old Surinamese migrant, currently living in the Netherlands in supported housing and suffering from dementia. Seeking shelter in the Netherlands allowed this individual to receive the vital care needed to dramatically improve their quality of life. In fact, this quality of life was in stark contrast to the conditions she faced in Suriname, which previously included homelessness, abuse, and neglect from family members. Due to peculiarities of the bureaucratic procedures regarding patient’s residence status in the Netherlands, there has been a request from the Dutch authorities to move this patient back to Suriname. The question of this individual’s relocation back to Suriname raised concerns with medical staff about the potential harm that would incur given the specific circumstances. This made a literature review of current evidence that could help the patient avoid deportation an imperative. To our knowledge, no similar review has been published in peer-reviewed literature. As cases such as the one described above are becoming more frequent in the world, due to a growing older adult population and a rise in migration worldwide, a review of existing literature was sorely needed. This could give a better understanding of the health effects of relocation of the older adults with dementia, facilitating and informing decision-making regarding these relocations. The review could serve as scientific evidence, supporting interventions and arguments in future cases where relocation may be suggested or prompted. The research question addressed in this study was as follows: What are the known health effects of relocation among older adults with dementia? The aim of this literature review was to provide insight into the physical, psychological, and social consequences of relocating older adults who are suffering from dementia. Methodology Search Strategy To collect and analyze relevant literature about the research topic, a systematic literature search was conducted in April 2017. The search focused on published articles describing relocation of vulnerable older adults, with special attention to articles focusing on people suffering from dementia. Each of the coauthors (F.V.M.R., J.C.E., L.M.D., J.O., E.S.) screened one of the databases: PubMed, Web of Science, PsychInfo, JSTOR, and ScienceDirect (Table 1). To ensure homogeneity, a joint search strategy was created and implemented by all coauthors. The key words for the search syntax were identified by means of brainstorming and by implementing a pearl-growing strategy. The key search terms included ‘Dementia’, ‘Relocation’, ‘Elderly’, and ‘Health effects’, and they were combined with synonyms and health outcome measures such as ‘Morbidity’ and ‘Mortality’. Due to the fact that the initial search including key words international displacement, international relocation and (im)migration has not yielded any relevant results, the decision was made to keep the search broad and not limit it to solely international relocation. The final search syntax was adapted per database, taking their peculiarities into account. This resulted in five different search syntaxes. Furthermore, the search was extended to the bibliographies of selected articles, which were scanned for relevant titles. Table 1. Strategy Search, per Database Database Mesh descriptors Web of Science ((Relocation trauma) OR (relocation stress) OR (relocation) OR (travel) OR (removal) OR (transition)) AND ((death) OR (mortality) OR (morbidity) OR (health consequences) OR (negative effects) OR (negative consequences) OR (health effects)) AND ((dementia) or (Alzheimer)) AND (elderly) JSTOR (dementia) AND ((transfer trauma) OR (relocation stress)) PsychInfo ((relocation stress) OR (transfer trauma)) AND ((delirium) OR (dementia)) AND ((negative health outcomes) OR (management negative health)) AND (elderly) PubMed ((dementia) OR (alzheimers)) AND ((relocation stress) OR (transfer trauma)) AND (elderly) ScienceDirect ((transfer) OR (relocation)) AND ((trauma) OR (stress)) AND ((dementia) OR (Alzheimer)) AND (geriatric) Database Mesh descriptors Web of Science ((Relocation trauma) OR (relocation stress) OR (relocation) OR (travel) OR (removal) OR (transition)) AND ((death) OR (mortality) OR (morbidity) OR (health consequences) OR (negative effects) OR (negative consequences) OR (health effects)) AND ((dementia) or (Alzheimer)) AND (elderly) JSTOR (dementia) AND ((transfer trauma) OR (relocation stress)) PsychInfo ((relocation stress) OR (transfer trauma)) AND ((delirium) OR (dementia)) AND ((negative health outcomes) OR (management negative health)) AND (elderly) PubMed ((dementia) OR (alzheimers)) AND ((relocation stress) OR (transfer trauma)) AND (elderly) ScienceDirect ((transfer) OR (relocation)) AND ((trauma) OR (stress)) AND ((dementia) OR (Alzheimer)) AND (geriatric) View Large Table 1. Strategy Search, per Database Database Mesh descriptors Web of Science ((Relocation trauma) OR (relocation stress) OR (relocation) OR (travel) OR (removal) OR (transition)) AND ((death) OR (mortality) OR (morbidity) OR (health consequences) OR (negative effects) OR (negative consequences) OR (health effects)) AND ((dementia) or (Alzheimer)) AND (elderly) JSTOR (dementia) AND ((transfer trauma) OR (relocation stress)) PsychInfo ((relocation stress) OR (transfer trauma)) AND ((delirium) OR (dementia)) AND ((negative health outcomes) OR (management negative health)) AND (elderly) PubMed ((dementia) OR (alzheimers)) AND ((relocation stress) OR (transfer trauma)) AND (elderly) ScienceDirect ((transfer) OR (relocation)) AND ((trauma) OR (stress)) AND ((dementia) OR (Alzheimer)) AND (geriatric) Database Mesh descriptors Web of Science ((Relocation trauma) OR (relocation stress) OR (relocation) OR (travel) OR (removal) OR (transition)) AND ((death) OR (mortality) OR (morbidity) OR (health consequences) OR (negative effects) OR (negative consequences) OR (health effects)) AND ((dementia) or (Alzheimer)) AND (elderly) JSTOR (dementia) AND ((transfer trauma) OR (relocation stress)) PsychInfo ((relocation stress) OR (transfer trauma)) AND ((delirium) OR (dementia)) AND ((negative health outcomes) OR (management negative health)) AND (elderly) PubMed ((dementia) OR (alzheimers)) AND ((relocation stress) OR (transfer trauma)) AND (elderly) ScienceDirect ((transfer) OR (relocation)) AND ((trauma) OR (stress)) AND ((dementia) OR (Alzheimer)) AND (geriatric) View Large Study Selection Studies were selected based on predetermined inclusion and exclusion criteria. Each article selected individually was discussed among all the authors and finally included in the review when consensus was found. Inclusion criteria are as follows: published in a peer-reviewed journal, written in English, French, and Dutch, the initial search was focused on articles between 2007 and 2017, but due to scarcity of published materials, the search was expanded to 1994 onwards, studies with a focus on the mental and/or physical health consequences relocation, and studies focused on long-term or permanent relocation in older adults. Exclusion criteria are as follows: gray literature, not written in English, French, or Dutch, outside the time scope, Studies focusing exclusively on short-term transitions, that is, to a hospital for acute care, those discussing transitions to palliative, and studies investigating only the relocation frequency in a particular population. Due to the scarcity of the data, there were no exclusions based on the utilized methodology (quantitative, qualitative, and review articles were screened and included if relevant). All the articles identified in the initial syntax search within each database were screened by the respective coauthor individually according to the abovementioned criteria. Same criteria applied at every stage of the screening process. Several steps were taken: First, the articles were screened using only the title and abstract information, followed by an assessment of the full texts. In the initial search, 8,623 articles were found, of which 98 articles were selected based on title and abstract. After assessing full texts according to the inclusion and exclusion criteria, 13 articles were included in the review. An overview of the selection process can be found in Figure 1. Figure 1. View largeDownload slide Flow chart of the selection process. Figure 1. View largeDownload slide Flow chart of the selection process. Quality Assessment The methodological quality of the selected articles was assessed independently by two assessors, using the Standard Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields (Kmet, Lee, & Cook, 2004) for primary research articles and the International Narrative Systematic Assessment (INSA) tool (La Torre, Backhaus, & Alice, 2015) for literature reviews. Primary research articles were assigned a score between 0 and 1. Articles rated 0.8 and above were considered very good, 0.6–0.79 satisfactory, and 0.59 or below unsatisfactory (see Table 2). The narrative reviews were assigned a score between 0 and 7. Articles with a score of 5 or higher were considered good, whereas a score of less than 5 was deemed unsatisfactory (La Torre et al., 2015). After independent assessments, discrepancies between the assessments were discussed, and consensus reached. No studies were excluded based on quality scores. Table 2. Assessment Score Articles Article Score assessor 1 Score assessor 2 Score: Consensus Bellantonio et al. (2008) 0.71 0.78 0.64 Morgan and Stewart (1999) 0.9 0.85 0.8 Morse (2000) 0.3 0.35 0.3 Brown et al. (2012) 0.91 1.0 1.0 Orrell and Bebbington (1998) 0.82 0.90 0.82 McAuslane and Sperlinger (1994) 0.64 0.68 0.68 Mallick and Whipple (2000) 0.5 0.59 0.55 Mirotznik and Kamp (2000) 0.82 0.82 0.86 Falk et al. (2011) 0.88 0.83 0.83 Van den Block et al. (2015) 0.95 0.77 0.95 Walker et al. (2007) 0.8 0.9 0.8 Article Score assessor 1 Score assessor 2 Score: Consensus Bellantonio et al. (2008) 0.71 0.78 0.64 Morgan and Stewart (1999) 0.9 0.85 0.8 Morse (2000) 0.3 0.35 0.3 Brown et al. (2012) 0.91 1.0 1.0 Orrell and Bebbington (1998) 0.82 0.90 0.82 McAuslane and Sperlinger (1994) 0.64 0.68 0.68 Mallick and Whipple (2000) 0.5 0.59 0.55 Mirotznik and Kamp (2000) 0.82 0.82 0.86 Falk et al. (2011) 0.88 0.83 0.83 Van den Block et al. (2015) 0.95 0.77 0.95 Walker et al. (2007) 0.8 0.9 0.8 View Large Table 2. Assessment Score Articles Article Score assessor 1 Score assessor 2 Score: Consensus Bellantonio et al. (2008) 0.71 0.78 0.64 Morgan and Stewart (1999) 0.9 0.85 0.8 Morse (2000) 0.3 0.35 0.3 Brown et al. (2012) 0.91 1.0 1.0 Orrell and Bebbington (1998) 0.82 0.90 0.82 McAuslane and Sperlinger (1994) 0.64 0.68 0.68 Mallick and Whipple (2000) 0.5 0.59 0.55 Mirotznik and Kamp (2000) 0.82 0.82 0.86 Falk et al. (2011) 0.88 0.83 0.83 Van den Block et al. (2015) 0.95 0.77 0.95 Walker et al. (2007) 0.8 0.9 0.8 Article Score assessor 1 Score assessor 2 Score: Consensus Bellantonio et al. (2008) 0.71 0.78 0.64 Morgan and Stewart (1999) 0.9 0.85 0.8 Morse (2000) 0.3 0.35 0.3 Brown et al. (2012) 0.91 1.0 1.0 Orrell and Bebbington (1998) 0.82 0.90 0.82 McAuslane and Sperlinger (1994) 0.64 0.68 0.68 Mallick and Whipple (2000) 0.5 0.59 0.55 Mirotznik and Kamp (2000) 0.82 0.82 0.86 Falk et al. (2011) 0.88 0.83 0.83 Van den Block et al. (2015) 0.95 0.77 0.95 Walker et al. (2007) 0.8 0.9 0.8 View Large Data Extraction and Analysis To analyze the selected articles, an extraction table was made (see Supplementary Tables 1–3). The categories were “general information,” “introduction,” “sample,” “controls,” “methodology,” “results,” and “results text.” Each category consisted of multiple subquestions that provided more detailed information. The extraction table was completed by the individual coauthors and checked again by other coauthors. Results After rigorous examination of the full texts, 13 articles were included. General information about the articles can be found in Table 3. The studies varied in methodology: one randomized trial, one single case study, two cohort studies, two case–control studies, two cross-sectional studies, one pretest–post-test experimental comparison, one pretest–post-test mixed-method study, two literature reviews, and one international mortality follow-back study. More detailed methodological summaries of each article can be found in Supplementary Tables 1 and 2. The selected studies were published between 1994 and 2015, and most studies were conducted in Finland, America, United Kingdom, and international comparative studies between four European countries. The methodological quality was considered very good in seven of the articles (Brown et al., 2012; Falk, Wijk, & Persson, 2011; Mirotznik & Kamp, 2000; Morgan & Stewart, 1999; Orrell & Bebbington, 1998; Van den Block et al., 2015; Walker, Curry, & Hogstel, 2007), satisfactory in two of the articles (Bellantonio et al., 2008; McAuslane & Sperlinger, 1994), and unsatisfactory in four of the articles (Kao, Travis, & Acton, 2004; Mallick & Whipple, 2000; Morse, 2000; Verkade, van Meijel, Brink, Schmitz, & Peijnenburg, 2007). Table 3. General Study Characteristics Reference Intro Aim Type of relocation Target population 1 Bellantonio et al. (2008) To determine whether a multidisciplinary team intervention minimizes unanticipated transitions from assisted living for persons with dementia. Interinstitutional Older adults with dementia who relocated to assisted living 2 Brown et al. (2012) This study examined the effects of evacuation during Hurricane Gustav on residents who were cognitively impaired. Interinstitutional Cognitively impaired people in a nursing home facility who were exposed to relocation because of storm treat 3 Morgan and Stewart (1999) This article describes results of the qualitative component of a larger research project examining environment–behavior relationships in dementia care settings. Intrainstitutional People in contact with older adults with dementia 4 Orrell and Bebbington (1998) The purpose of this study was to investigate two hypotheses: (a) Life events in dementia will be associated with mild/moderate rather than severe cognitive impairment. (b) Life events will increase the risk of admission in dementia of mild/moderate cognitive impairment. Residence to institution Senile older patients suffering from dementia 5 McAuslane and Sperlinger (1994) This study aimed: (i) to evaluate changes in residents’ functioning and behavior resulting from the move and (ii) to assess the impact of the move on the nursing staff who were moving with the patients. Interinstitutional Older adults with dementia and their nursing staff 6 Mallick and Whipple (2000) To validate the presence of some defining characteristics of relocation stress syndrome in a group of long-term care residents relocated en masse to a new facility. Interinstitutional Older residents 7 Mirotznik and Kamp (2000) This study investigated whether cognitively impaired nursing home residents are at particular risk of experiencing harmful effects during a mass, intrainstitutional, interbuilding relocation. Intrainstitutional, interbuilding Long-term nursing home residents 8 Verkade et al. (2007) To study what is viewed as agitation in persons suffering from dementia, what causes have been found for this, and what psychosocial intervention strategies are available to nurses and caregivers. Not specified Persons suffering from dementia 9 Falk et al. (2011) The aim of this study was to examine the effects of that relocation on the resident quality of life, well-being, and perceived person-centeredness, as well as to describe their experiences in relation to the relocation. Interinstitutional Elderly institution residents 10 Van den Block et al. (2015) The objective of this study was to use existing nationwide representative networks of general practitioners in Belgium, the Netherlands, Spain, and Italy to investigate the places of care in the final 3 months of life, the frequency of transitions between care settings, and the most frequently occurring final transitions and the reasons for these transitions. Residence to institution, interinstitutional, intrainstitutional Individuals aged 18 or older 11 Morse (2000) Not specified Residence to institution One 84-year-old male 12 Walker et al. (2007) The aim of this study was to verify the nature and kind of distress associated with relocation stress syndrome, to validate diagnostic criteria for relocation stress syndrome among older adults residing in nursing homes and assisted-living facilities, and to determine whether relocation stress syndrome manifests differently among residents of one kind of facility versus another. Residence to institution Older adults in two rural counties in north central Texas 13 Kao et al. (2004) This article offers suggestions for interventions that can be generalized across diverse situations, including admissions from community-based sites and home care, and intrainstitutional and transinstitutional relocation. Residence to institution, interinstitutional, intrainstitutional N/A Reference Intro Aim Type of relocation Target population 1 Bellantonio et al. (2008) To determine whether a multidisciplinary team intervention minimizes unanticipated transitions from assisted living for persons with dementia. Interinstitutional Older adults with dementia who relocated to assisted living 2 Brown et al. (2012) This study examined the effects of evacuation during Hurricane Gustav on residents who were cognitively impaired. Interinstitutional Cognitively impaired people in a nursing home facility who were exposed to relocation because of storm treat 3 Morgan and Stewart (1999) This article describes results of the qualitative component of a larger research project examining environment–behavior relationships in dementia care settings. Intrainstitutional People in contact with older adults with dementia 4 Orrell and Bebbington (1998) The purpose of this study was to investigate two hypotheses: (a) Life events in dementia will be associated with mild/moderate rather than severe cognitive impairment. (b) Life events will increase the risk of admission in dementia of mild/moderate cognitive impairment. Residence to institution Senile older patients suffering from dementia 5 McAuslane and Sperlinger (1994) This study aimed: (i) to evaluate changes in residents’ functioning and behavior resulting from the move and (ii) to assess the impact of the move on the nursing staff who were moving with the patients. Interinstitutional Older adults with dementia and their nursing staff 6 Mallick and Whipple (2000) To validate the presence of some defining characteristics of relocation stress syndrome in a group of long-term care residents relocated en masse to a new facility. Interinstitutional Older residents 7 Mirotznik and Kamp (2000) This study investigated whether cognitively impaired nursing home residents are at particular risk of experiencing harmful effects during a mass, intrainstitutional, interbuilding relocation. Intrainstitutional, interbuilding Long-term nursing home residents 8 Verkade et al. (2007) To study what is viewed as agitation in persons suffering from dementia, what causes have been found for this, and what psychosocial intervention strategies are available to nurses and caregivers. Not specified Persons suffering from dementia 9 Falk et al. (2011) The aim of this study was to examine the effects of that relocation on the resident quality of life, well-being, and perceived person-centeredness, as well as to describe their experiences in relation to the relocation. Interinstitutional Elderly institution residents 10 Van den Block et al. (2015) The objective of this study was to use existing nationwide representative networks of general practitioners in Belgium, the Netherlands, Spain, and Italy to investigate the places of care in the final 3 months of life, the frequency of transitions between care settings, and the most frequently occurring final transitions and the reasons for these transitions. Residence to institution, interinstitutional, intrainstitutional Individuals aged 18 or older 11 Morse (2000) Not specified Residence to institution One 84-year-old male 12 Walker et al. (2007) The aim of this study was to verify the nature and kind of distress associated with relocation stress syndrome, to validate diagnostic criteria for relocation stress syndrome among older adults residing in nursing homes and assisted-living facilities, and to determine whether relocation stress syndrome manifests differently among residents of one kind of facility versus another. Residence to institution Older adults in two rural counties in north central Texas 13 Kao et al. (2004) This article offers suggestions for interventions that can be generalized across diverse situations, including admissions from community-based sites and home care, and intrainstitutional and transinstitutional relocation. Residence to institution, interinstitutional, intrainstitutional N/A Note: N/A, not applicable. View Large Table 3. General Study Characteristics Reference Intro Aim Type of relocation Target population 1 Bellantonio et al. (2008) To determine whether a multidisciplinary team intervention minimizes unanticipated transitions from assisted living for persons with dementia. Interinstitutional Older adults with dementia who relocated to assisted living 2 Brown et al. (2012) This study examined the effects of evacuation during Hurricane Gustav on residents who were cognitively impaired. Interinstitutional Cognitively impaired people in a nursing home facility who were exposed to relocation because of storm treat 3 Morgan and Stewart (1999) This article describes results of the qualitative component of a larger research project examining environment–behavior relationships in dementia care settings. Intrainstitutional People in contact with older adults with dementia 4 Orrell and Bebbington (1998) The purpose of this study was to investigate two hypotheses: (a) Life events in dementia will be associated with mild/moderate rather than severe cognitive impairment. (b) Life events will increase the risk of admission in dementia of mild/moderate cognitive impairment. Residence to institution Senile older patients suffering from dementia 5 McAuslane and Sperlinger (1994) This study aimed: (i) to evaluate changes in residents’ functioning and behavior resulting from the move and (ii) to assess the impact of the move on the nursing staff who were moving with the patients. Interinstitutional Older adults with dementia and their nursing staff 6 Mallick and Whipple (2000) To validate the presence of some defining characteristics of relocation stress syndrome in a group of long-term care residents relocated en masse to a new facility. Interinstitutional Older residents 7 Mirotznik and Kamp (2000) This study investigated whether cognitively impaired nursing home residents are at particular risk of experiencing harmful effects during a mass, intrainstitutional, interbuilding relocation. Intrainstitutional, interbuilding Long-term nursing home residents 8 Verkade et al. (2007) To study what is viewed as agitation in persons suffering from dementia, what causes have been found for this, and what psychosocial intervention strategies are available to nurses and caregivers. Not specified Persons suffering from dementia 9 Falk et al. (2011) The aim of this study was to examine the effects of that relocation on the resident quality of life, well-being, and perceived person-centeredness, as well as to describe their experiences in relation to the relocation. Interinstitutional Elderly institution residents 10 Van den Block et al. (2015) The objective of this study was to use existing nationwide representative networks of general practitioners in Belgium, the Netherlands, Spain, and Italy to investigate the places of care in the final 3 months of life, the frequency of transitions between care settings, and the most frequently occurring final transitions and the reasons for these transitions. Residence to institution, interinstitutional, intrainstitutional Individuals aged 18 or older 11 Morse (2000) Not specified Residence to institution One 84-year-old male 12 Walker et al. (2007) The aim of this study was to verify the nature and kind of distress associated with relocation stress syndrome, to validate diagnostic criteria for relocation stress syndrome among older adults residing in nursing homes and assisted-living facilities, and to determine whether relocation stress syndrome manifests differently among residents of one kind of facility versus another. Residence to institution Older adults in two rural counties in north central Texas 13 Kao et al. (2004) This article offers suggestions for interventions that can be generalized across diverse situations, including admissions from community-based sites and home care, and intrainstitutional and transinstitutional relocation. Residence to institution, interinstitutional, intrainstitutional N/A Reference Intro Aim Type of relocation Target population 1 Bellantonio et al. (2008) To determine whether a multidisciplinary team intervention minimizes unanticipated transitions from assisted living for persons with dementia. Interinstitutional Older adults with dementia who relocated to assisted living 2 Brown et al. (2012) This study examined the effects of evacuation during Hurricane Gustav on residents who were cognitively impaired. Interinstitutional Cognitively impaired people in a nursing home facility who were exposed to relocation because of storm treat 3 Morgan and Stewart (1999) This article describes results of the qualitative component of a larger research project examining environment–behavior relationships in dementia care settings. Intrainstitutional People in contact with older adults with dementia 4 Orrell and Bebbington (1998) The purpose of this study was to investigate two hypotheses: (a) Life events in dementia will be associated with mild/moderate rather than severe cognitive impairment. (b) Life events will increase the risk of admission in dementia of mild/moderate cognitive impairment. Residence to institution Senile older patients suffering from dementia 5 McAuslane and Sperlinger (1994) This study aimed: (i) to evaluate changes in residents’ functioning and behavior resulting from the move and (ii) to assess the impact of the move on the nursing staff who were moving with the patients. Interinstitutional Older adults with dementia and their nursing staff 6 Mallick and Whipple (2000) To validate the presence of some defining characteristics of relocation stress syndrome in a group of long-term care residents relocated en masse to a new facility. Interinstitutional Older residents 7 Mirotznik and Kamp (2000) This study investigated whether cognitively impaired nursing home residents are at particular risk of experiencing harmful effects during a mass, intrainstitutional, interbuilding relocation. Intrainstitutional, interbuilding Long-term nursing home residents 8 Verkade et al. (2007) To study what is viewed as agitation in persons suffering from dementia, what causes have been found for this, and what psychosocial intervention strategies are available to nurses and caregivers. Not specified Persons suffering from dementia 9 Falk et al. (2011) The aim of this study was to examine the effects of that relocation on the resident quality of life, well-being, and perceived person-centeredness, as well as to describe their experiences in relation to the relocation. Interinstitutional Elderly institution residents 10 Van den Block et al. (2015) The objective of this study was to use existing nationwide representative networks of general practitioners in Belgium, the Netherlands, Spain, and Italy to investigate the places of care in the final 3 months of life, the frequency of transitions between care settings, and the most frequently occurring final transitions and the reasons for these transitions. Residence to institution, interinstitutional, intrainstitutional Individuals aged 18 or older 11 Morse (2000) Not specified Residence to institution One 84-year-old male 12 Walker et al. (2007) The aim of this study was to verify the nature and kind of distress associated with relocation stress syndrome, to validate diagnostic criteria for relocation stress syndrome among older adults residing in nursing homes and assisted-living facilities, and to determine whether relocation stress syndrome manifests differently among residents of one kind of facility versus another. Residence to institution Older adults in two rural counties in north central Texas 13 Kao et al. (2004) This article offers suggestions for interventions that can be generalized across diverse situations, including admissions from community-based sites and home care, and intrainstitutional and transinstitutional relocation. Residence to institution, interinstitutional, intrainstitutional N/A Note: N/A, not applicable. View Large When synthesizing the results, certain common themes were found: increased mortality (four articles), negative physical effects of relocation (three articles), negative psychological and/or social effects of relocation (seven articles), and possible modifiers of the effects of relocation (three articles). For detailed result presentation, we refer to Supplementary Table 3. Mortality Four studies (Bellantonio et al., 2008; Brown et al., 2012; Falk et al., 2011; Van den Block et al., 2015) found an increased mortality among relocated individuals. A prospective cohort study by Brown and colleagues (2012) investigated the risks associated with interinstitutional relocation by examining records of 21,255 nursing home residents who resided within risk areas of being hit by Hurricane Gustav in the United States. Study showed that 5,036 of the residents relocated during the storm, had drastically higher mortality rates (218% higher than nonevacuated residents at 30 days and 158% higher at 90 days). In a pretest–post-test mixed-method study conducted by Falk and colleagues (2011) in Gothenburg, Sweden, 74 residents were interinstitutionally relocated and 81 residents that were not relocated served as an equivalent reference group. A tendency toward higher mortality was found among movers compared with non-movers (24% compared with 11%) also in this study. Bellantonio and colleagues (2008) built on the assumption that relocation has negative effects. They conducted a randomized trial, investigating whether a multidisciplinary intervention consisting of different health professionals’ examinations and treatment recommendations prerelocation could minimize the adverse effects. In the trial, 100 persons with dementia, who relocated from home to assisted-living facilities in Connecticut, were included, 48 of which were assigned the intervention. The study showed a trend toward decreased mortality and hospitalization within the intervention group. In addition, an international mortality follow-back study examining records from 4,791 individuals found that relocations (of any kind, including hopitalization) were highly prevalent during the last 3 months of life among residents in four European countries: Belgium, the Netherlands, Italy, and Spain (Van den Block et al., 2015). Important to note that this study excluded the data from those patients who died “suddenly and totally unexpectedly” in all participating countries and those who had died in specialist nursing homes in the Netherlands. However, one should be careful when interpreting the outcomes of the study as high relocation rates could be linked to the deteriorating health status of the patients. Another finding of the study was a suggestion that patients, residing at home, were most likely to experience one or multiple transitions in the last 3 months of their life. Morbidity Nine studies found that relocation could lead to negative effects on a physical, psychological, and/or social dimension in the patient’s life (Bellantonio et al., 2008; Brown et al., 2012; Falk et al., 2011; Kao et al., 2004; Mirotznik & Kamp, 2000; Morgan & Stewart, 1999; Morse, 2000; Orrell & Bebbington, 1998; Van den Block et al., 2015). Physical Effects Three of the studies found a decline in physical well-being related to relocation (Kao et al., 2004; Mirotznik & Kamp, 2000; Morse, 2000). Mirotznik and Kamp (2000) conducted a pretest–post-test experimental-comparison group design study among 788 facility residents in Brooklyn, New York, where they investigated whether cognitively impaired individuals were at special risk of experiencing harmful effects of interinstitutional and interbuilding relocation, finding it not to be moderated by cognitive status. They did, however, find that movers in general exhibited a greater physical decline than non-movers (looking at number of diagnosed diseases, number of conditions, signs and symptoms, and number of hospital admissions). Morse (2000) presented a single case of an older adult requiring a relocation into a nursing home, following physical decline. Despite the initial seemingly positive effects on physical health as the man was being treated for his physical decline, the man displayed concrete physical, as well as psychological and social, symptoms of relocation stress, for example, heart palpitations, anxiety, withdrawal vomiting, and anorexia nervosa. Psychological and/or Social Effects Relocation was also found to result in decreased psychological and social well-being in seven articles (Falk et al., 2011; Kao et al., 2004; Mirotznik & Kamp, 2000; Morgan & Stewart, 1999; Morse, 2000; Orrell & Bebbington, 1998; Verkade et al., 2007). Morgan and Stewart (1999) in their quasi-experimental, nonequivalent comparison group design with repeated measures of an intrainstitutional relocation, and Verkade and colleagues (2007), who conducted a qualitative literature review, presented results suggesting that environmental changes can cause agitated behavior or even trauma and that nonhomelike settings can cause anxiety. They showed the effects of relocation on perceived quality of life, degree of anxiety, psychosocial functioning, and tiredness. This is in line with a narrative literature review on residence to institution, interinstitutional, and intrainstitutional relocation by Kao and colleagues (2004), in which it was stated that “[…] ‘migrations’ across counties or states add stress and burden to an already disruptive event in the lives of older adults and their family members” (McAuley & Travis, as cited in Kao et al., 2004, p. 14). Orrell and Bebbington (1998) in a case–control comparison study of relocations from home to an institution further found that individuals with dementia may be particularly sensitive to the effects of psychosocial stress linked to major life events. This study offered a cautious support to the hypothesis that stressful life events are more common and have more powerful influence on cognitive state of patients with dementia with mild to moderate impairment by investigating the correlation between cognitive impairment (measured by, among others, Acute Deuteriation scale) and self-reported major life events. Mirotznik and Kamp (2000) found, in addition to the physical effects of relocation, that movers declined more psychosocially (judging by the measurements of cognitive status, functional capacity derived from the Minimum Data Set Plus [MDS1]: Cognitive Performance Scale and Sense of Initiative/Involvement) at long-term follow-up than non-movers. Modifiers The extent of participation and control that the individual has in the decision-making process was something frequently recurring as a modifying factor for adverse effects of relocation. Three studies implementing different study designs (narrative literature review, single case study, and cross-sectional, respectively; Kao et al., 2004; Morse, 2000; Walker et al., 2007) found this to be a strong determining factor for how the individual would cope with relocation. Limited participation in the decision-making process resulted in an individual being more prone to relocation stress syndrome, whereas a greater extent of autonomy in the process could minimize the adverse effects. In addition, whether relocation occurred en masse (staff and residents of, e.g., a unit moving together) and whether any preparations for the relocation had been undertaken were mentioned as possible outcome modifiers (Falk et al., 2011; Mallick & Whipple, 2000; McAuslane & Sperlinger, 1994; Mirotznik & Kamp, 2000). Studies With Different Outcomes Although the majority of the studies showed that relocation had negative effects on individuals, three of the studies (Mallick & Whipple, 2000; McAuslane & Sperlinger, 1994; Walker et al., 2007) presented moderately conflicting results. The case–control study by McAuslane and Sperlinger (1994) showed that less behavioral problems were present among 19 interinstitutional movers than among 17 non-movers, although the author argues that this might be due to the improved environment the new institution offered, as well as the move occurring en masse, minimizing disruption in the residents’ lives. Walker and colleagues (2007) conducted an interview study with eight nursing home residents and eight assisted-living facility residents, finding that relocation was not perceived as stressful among older adults relocating from home to two institutions in Texas. They concluded that incidence of relocation stress may be overestimated and relocation stress syndrome possibly is a superfluous diagnosis. Finally, Mallick and Whipple (2000) found no difference between the groups in their prospective cohort study of an interinstitutional relocation; however, they only examined effects on dependency, confusion, anxiety, depression, and withdrawal and stated that effects may be present on other characteristics of relocation stress syndrome. They also mentioned that the syndrome might not be applicable to group moves, but did not discard the possibility that it may be in individual cases. Discussion Dementia is a highly prevalent disease that forms an increasing problem worldwide. Within this review, the identified articles focused on relocation within nursing homes or from home to institutionalized care facilities and none of them discussed international relocations. As shown above, most studies found negative health effects of a relocation of older adults suffering from dementia. From the seven studies that were rated as “very good” in the assessment (Table 2), six reported an increase in morbidity and mortality after relocation (Brown et al., 2012; Falk et al., 2011; Mirotznik & Kamp, 2000; Morgan & Stewart, 1999; Orrell & Bebbington, 1998; Van den Block et al., 2015). Older adults who experienced a move showed physical and psychological decline and both mortality and morbidity rates increased. The seventh study by Walker and colleagues (2007) reported positive effects of a relocation to a facility that catered the needs of the patients. Furthermore, the relocatees were involved in the decision-making process, which lowered the stress experienced by the move. Four elements that determine the severity of the effects of relocation of older adults with dementia can be identified: the health of the patient, the patient involvement in the move, the similarities between the old and new situation, and continuity of care. They are divided into factors that may have negative impact on patients who are relocated and factors that could have a positive impact. Negative Impact The first determining factor of the severity of the effects of relocation on an individual with dementia is the pretransitional physical and mental well-being of the patient. Although all patients in a nursing home are at risk for the negative effects of a move, persons suffering from dementia can experience more suffering. Life events, such as relocations, have a bigger impact on them, leading to higher stress levels and possibly negative health outcomes (Brown et al., 2012; Orrell & Bebbington, 1998). As they often have difficulties verbalizing their needs and understanding changing situations, they are in need of an undisrupted daily schedule (Bellantonio et al., 2008; Brown et al., 2012; Williams et al., 2016), which a relocation to a new environment is likely to jeopardize. Although most studies underline the negative effects specifically for persons suffering from dementia, one study was found that stated that cognitive impairments did not result in “unusual risk for negative effects of relocation” but that the move caused physical degradation in all residents, no matter their cognitive well-being (Mirotznik & Kamp, 2000). The second factor that has a negative impact on patients with dementia who are relocated is abrupt changes in their schedule and continuation of care. As people suffering from dementia are in need of structured daily activities, continuous caregivers, and a fixed schedule, a disruption of this due to a relocation can be harmful (Brown et al., 2012; McAuslane & Sperlinger, 1994), which is also consistent with results from, for example, a study by Umegaki and colleagues (2016). The negative effects on the physical and mental well-being can be disastrous if the change is radical (Kao et al., 2004). Positive Impact The literature review shows that the extent to which patients are involved in the decision-making process of the relocation could have an influence on the impact of the relocation. When patients are involved in the decision-making process around the move, their self-reported quality of life increases and stress that results from the move is lowered (Fetherstonhaugh, Tarzia, & Nay, 2013; Kao et al., 2004; Morse, 2000; Walker et al., 2007). Furthermore, participation in a preparation program can increase the resilience of patients and lower its negative effects (Brown et al., 2012; Castle, 2001). Yet, although these studies point out an important factor, some uncertainty regarding this remains. First, there is a lack of evaluation and research on what kind of preparation programs are most beneficial. Second, due to the cognitive impairments of dementia, it is uncertain to what extent a patient can be prepared and be part of the decision-making process (Brown et al., 2012; Fetherstonhaugh et al., 2013). Another factor that could positively affect the effect of relocation is the similarity between the old and new situation. When patients are relocated together with their staff, furniture, and their roommates, this can positively influence the presentation of symptoms, for example, lower levels of stress (Mallick, & Whipple, 2000; McAuslane & Sperlinger, 1994). If patients need to be relocated, it is proven to be best if the new environment is mostly similar to their previous environment. The authors did, however, describe the studied move as the “best case scenario,” in which residents had been prepared for the relocation over a period of 6 months and were relocated en masse, together with the staff and their belongings (Mirotznik & Kamp, 2000). This underlines the importance of the environment, as supported by Day and colleagues (2000). A positive effect of relocation is, therefore, more likely if the environment of the patient moves along with him/her, resulting in less abrupt changes. Moreover, if there is an improvement from the previous situation and it is a permanent solution, this can also have positive effects on the health outcomes of the relocatees (McAuslane & Sperlinger, 1994; Verkade et al., 2007). In summary, the most positive outcome was found in a relocation where residents were moved from a hospital-based ward to a community-based ward, together with their staff, furniture, and other patients. In this case, there was a continuity of care and relationships, and the environment improved (McAuslane & Sperlinger, 1994; Mirotznik & Kamp, 2000). Most positive effects were found in relocations that were well-prepared, intended for long-term and with little disruption of daily activities for the older adults. The most negative effects came from temporary relocations where older adults had to experience a second move back to the first situation. The situation that is most dangerous for older adults suffering from dementia is a temporary involuntary move with a radical disruption from the continuity of care and the situation with which the patient is familiar, as in the case that initiated this literature review. This can result in relocation stress or trauma, which can lead to psychosocial symptoms and physical decline (Morse, 2000). In one study, this resulted in a 218% increase of mortality within 30 days of the move and a 158% increase in mortality after 90 days, compared with the control group (Brown et al., 2012). Conclusion Despite the fact that this review was initiated to support the case of an older adult facing international relocation, no literature specifically on the international relocation was identified. This shows a crucial gap in the existing literature, despite the fact that in 2015 there were 244 million international migrants in the world (10% more than in 2010; Triandafyllidou, 2018). Moreover, studies from different countries showed that migration is associated with higher risks of morbidity and mortality (Brussaard, van Erp-Baart, Brants, Hulshof, & Löwik, 2001; Jervelund et al., 2017). In most studies identified in this review, the health effects of any relocation of older adults suffering from dementia were negative. A decline in physical, mental, behavioral, and functional well-being was reported (Bellantonio et al., 2008; Falk et al., 2011; Mirotznik & Kamp, 2000; Morse, 2000; Walker et al., 2007). The most recurring effect was a higher level of stress, which is more problematic for patients with dementia (Orrell & Bebbington, 1998), as it has major effects on their physical and mental well-being. Older adults who were relocated, were diagnosed with more diseases, symptoms and hospital admissions than others with similar conditions who did not move (Mirotznik & Kamp, 2000). In general, unless it is carefully planned and with as little disruption from the previous situation as possible, it is best to avoid changing lives of people with dementia be it a move from one home for older adults to another or an international deportation. In addition, it was noted that stress can potentially be seen as a link between changes in the direct environment and adverse health effects; thus, it is recommended to actively work to reduce their exposure to stress. The relocation decision needs to carefully balance the possible positive and negative effects on patient’s physical and mental health and well-being. On the one hand, one needs to consider the direct medical needs of the patients. However, on the other hand, it needs to be clear that the medical needs are not the only ones patients have, as psychological well-being can also have a direct impact on health status. Moreover, at times, the medical and the social/psychological needs of the patient can be in conflict with one another. To make such a decision, responsible person(s) need to be in possession of the most up-to-date research findings. However, the relatively low number of identified articles seems to suggest a possible lack of awareness among the health professionals, policy-makers, and researchers. Supplementary Material Supplementary data are available at The Gerontologist online. Funding None reported. Conflict of Interest None reported. Acknowledgments We thank Gerrianne Smits from the Dokters van de Wereld and Gerd Beckers for initiating this research and using it to improve lives of the patients. F. V. M. Ryman and J. C. Erisman contributed equally to this study. References Amano , N. , Inuzuka , S. , & Ogihara , T . ( 2009 ). Behavioral and psychological symptoms of dementia and medical treatment . Psychogeriatrics , 9 , 45 – 49 . doi: 10.1111/j.1479-8301.2009.00284.x Google Scholar CrossRef Search ADS PubMed Bellantonio , S. , Kenny , A. M. , Fortinsky , R. H. , Kleppinger , A. , Robison , J. , Gruman , C. ,… Trella , P. M . ( 2008 ). 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For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)

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The GerontologistOxford University Press

Published: Apr 28, 2018

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