Utilizing the physical green care environment to support activities of daily living for nursing home residents: a focused ethnographic case study.

BACKGROUND: The nursing home residents' ability to carry out Activities of Daily Living (ADLs) is influenced by the physical care environment. One emerging area of interest in scientific research is the green care environment within nursing home care, where agricultural activities such as gardening and animal care are integrated alongside daily care. Previous research has neglected to explore how these environments can be employed to enhance ADL performance. This study, therefore, explores how a green care environment, specifically one with an animal shelter, can be used to support nursing home residents in their ADLs. METHODS: A focused ethnographic case study was conducted in one nursing home. Data was collected employing participatory observations, informal conversations, and semi-structured interviews, which we analyzed by employing a thematic analysis. RESULTS: Overall, 25 residents were observed for a total time of 89h, and interviews were conducted with 10 staff members. The nursing home integrates activities in the green care environment into daily care for a broad scope of residents. The analysis revealed four themes: (1) The (in)visibility of ADL, (2) Reciprocal care dynamics: Fostering ADL performance through connection and teamwork, (3) Seized and missed opportunities for meaningful integration of ADL in the physical green care environment, and Theme (4) Professional fulfillment and ADL task obligation: Views from staff and management. CONCLUSIONS: This physical green care environment carries the potential to enhance the residents' daily activities and foster better staff-resident relationships. Yet, there are varying views among staff and management regarding its integration into the residents' lives and care.

The struggle is real-A mixed qualitative methods synthesis of challenges in nursing care in activities of daily living.

INTRODUCTION: Supporting care receivers in Activities of Daily Living (ADL), irrespective of diagnosis, setting, or cultural background, lies at the heart of fundamental nursing care. The pursuit of quality ADL care becomes increasingly challenging with the changing complexity of care needs. ADL care delivery is often undervalued and is considered a low-status task despite its crucial importance to care receivers. This study aims to synthesize challenges in ADL care irrespective of the care setting. METHODS: In the mixed qualitative methods study, we used expert panel consultations, world café sessions, and a rapid literature review. For data analysis, we simultaneously analyzed the three data sets using inductive and deductive inquiry. RESULTS: We identified four challenges and their corresponding subthemes. They are (1) Undervalued common-sense work versus complex, high-skilled care provision; (2) Limitations in professional reflective clinical decision-making; (3) Missed opportunities for shared ADL decisions; and (4) Meeting ADL care needs in a high-throughput system. CONCLUSION: These challenges reveal the complexity of ADL care and how its paradoxical narrative relates to the conditions in which nursing professionals struggle to create opportunities, for reflective clinical reasoning and shared ADL decisions, by facing organizational and environmental barriers. CLINICAL RELEVANCE: This study is relevant to nursing professionals, care organizations, policymakers, and researchers aiming to improve ADL care and provide insights into challenges in ADL care. This study forms the starting point for a changing narrative on ADL nursing care and subsequent quality improvements in the form of, for example, guidelines for nursing professionals.

Professional caregivers' perceived barriers hindering the prevention and reduction of involuntary treatment among older persons receiving long-term care: A mixed methods study.

AIMS: To gain insights into the barriers towards the prevention and/or reduction of involuntary treatment in long-term geriatric care. DESIGN: Mixed methods. BACKGROUND: Measures to which a person resists and/or does not provide consent for are defined as involuntary treatment. The use of involuntary treatment violates the autonomy of (older) persons and causes more harm than benefit. Moreover, it contradicts the values of person-centred care. Nevertheless, its use among people living with dementia (PLWD) is still common practice. METHODS: We conducted a cross-sectional, mixed methods study, including an online survey for professional caregivers and a semistructured focus group interview with professional caregivers. RESULTS: A total of 218 participants completed the questionnaire. The percentage of participants who perceived barriers in one of the 22 survey items ranged from 15% to 42%. Lack of time, the experienced need to use involuntary treatment, uncertainty about responsibilities of stakeholders and a lack of knowledge on methods to prevent and/or reduce the use of involuntary treatment were most seen as barriers. Nursing staff perceived a lack of time hindering them in the prevention or reduction of involuntary treatment more often than other professional caregivers. Working in home care and having no former experience with involuntary treatment usage increased perceived barriers. Participants of the focus group interview confirmed these findings and added that professional caregivers in general lack awareness on the concept of involuntary treatment. CONCLUSIONS: One out of four professional caregivers experiences barriers hindering prevention and/or reduction of involuntary treatment. More research is needed to gain a better understanding of how professional caregivers can be supported to remove barriers and, consequently, prevent and/or reduce the use of involuntary treatment. RELEVANCE TO CLINICAL PRACTICE: Professional caregivers experience many barriers towards the prevention and reduction of involuntary treatment. Future initiatives should aim to remove the perceived barriers.

District nurses' experiences with involuntary treatment in dementia care at home: a qualitative descriptive study.

BACKGROUND: Research shows that half of person(s) living with dementia (PLWD) receive care which they resist and/or have not given consent to, defined as involuntary treatment. District nurses play a key role in providing this care. Knowledge about how district nurses experience involuntary treatment is lacking. Therefore, the aim of this study was to describe the experiences of district nurses who used involuntary treatment for PLWD at home. METHODS: A qualitative descriptive design using semi-structured interviews. Sixteen district nurses with experience in involuntary treatment for PLWD were recruited through purposive sampling. Data were analysed using the Qualitative Analysis Guide of Leuven. RESULTS: District nurses' experiences with involuntary treatment were influenced by their involvement in the decision-making process. When they were involved, they considered involuntary treatment use to be appropriate care. However, at the moment that involuntary treatment use was started, district nurses were worried that its use was unjust since they wished to respect the wishes of the PLWD. Eventually, district nurses found, from a professional perspective, that involuntary treatment use was necessary, and that safety outweighed the autonomy of the PLWD. District nurses experienced dealing with this dilemma as stressful, due to conflicting values. If district nurses were not involved in the decision-making process regarding the use of involuntary treatment, family caregivers generally decided on its use. Often, district nurses perceived this request as inappropriate dementia care and they first tried to create a dialogue with the family caregivers to reach a compromise. However, in most cases, family caregivers stood by their request and the district nurse still provided involuntary treatment and found this difficult to tolerate. CONCLUSIONS: Our results show that district nurses experience involuntary treatment use as stressful due to dealing with obverse values of safety versus autonomy. To prevent involuntary treatment use and obverse values, we need to increase their ethical awareness, communication skills, knowledge and skills with person-centred care so they can deal with situations that can evolve into involuntary treatment use in a person-centred manner.

A Quasi-experimental study on prevention and reduction of involuntary treatment at home (PRITAH) in people with dementia.

AIM AND OBJECTIVES: To examine the implementation (reach, dose, fidelity, adaptations, satisfaction), mechanisms of impact (attitude, subjective norm, perceived behavioural control and intention) and context of the PRITAH intervention. BACKGROUND: Involuntary treatment, defined as care provided against one's will, is highly prevalent in home care. The PRITAH intervention comprises policy, workshops, coaching and alternative measures for professional caregivers to prevent and reduce involuntary treatment in home care. DESIGN: Quasi-experimental study. METHODS: Eight home care teams from two care organisations participated in this study. Guided by the Theory of Planned Behavior, the mechanisms of impact were evaluated with questionnaires. Implementation and context were assessed using attendance lists, evaluation questionnaires, focus groups and logbooks. The study adhered to the TREND checklist. RESULTS: 124 of 133 eligible professional caregivers participated (93%). All four components were delivered with minor deviations from protocol. Participants' subjective norms and perceived behavioural control changed over time in favour of the intervention group. No effects were seen for attitude and intention. Barriers included an unclear policy and lack of communication between stakeholders. The multidisciplinary approach and possibility to discuss involuntary treatment with the specialised nurse were described as facilitators. CONCLUSIONS: Prevention and reduction of involuntary treatment at home is feasible in home care practice and contributes to changing professional caregivers' subjective norms and perceived behavioural control, prerequisites for behavioural change in order to prevent and reduce involuntary treatment. A follow-up study on the effectiveness of PRITAH on actual use, prevention and reduction of involuntary treatment in home care is needed. Future studies should emphasise the role of family caregivers and GPs and actively involve them in the prevention and reduction of involuntary treatment. RELEVANCE TO CLINICAL PRACTICE: Involuntary treatment is commonly used in dementia home care and professional and family caregivers need to be supported in prevention and reduction of involuntary treatment in people with dementia.

Involuntary treatment in dementia care at home: Results from the Netherlands and Belgium.

AIMS AND OBJECTIVES: To gain insight into the request, use and associated factors of involuntary treatment in people with dementia (PwD) receiving professional home care in the Netherlands and Belgium. BACKGROUND: Most of the PwD remain living at home as long as possible. Due to complex care needs, this can result in an increased risk for care provided against the wishes of the client and/or to which the client resists, referred to as involuntary treatment. DESIGN: Secondary data analyses of two cross-sectional surveys. METHODS: Dementia case managers and district nurses filled in a questionnaire for each PwD in their caseload. This study included data of 627 PwD receiving professional home care in the Netherlands and 217 in Belgium. The same methodology (questionnaire and variables) was used in both samples. Descriptive statistics and multi-level logistic regression analyses were used to analyse the data. The study adhered to the STROBE checklist. RESULTS: More than half of the PwD (50.7%) living at home received involuntary treatment (Belgium 68.2% and the Netherlands 44.7%). Nonconsensual care (82.7%) was the most common, followed by psychotropic medication (40.7%) and physical restraints (18.5%). Involuntary treatment use was associated with living alone, greater ADL dependency, lower cognitive ability, higher family caregiver burden and receiving home care in Belgium versus the Netherlands. Involuntary treatment was most often requested by family caregivers. CONCLUSIONS: Involuntary treatment is often used in PwD, which is in line with previous findings indicating dementia as a risk factor for involuntary treatment use. More research is needed to gain insight into variations in prevalence across other countries, which factors influence these differences and what countries can learn from each other regarding prevention of involuntary treatment. RELEVANCE TO CLINICAL PRACTICE: To provide person-centred care, it is important to study ways to prevent involuntary treatment in PwD and to stimulate dialogue between professional and family caregivers for alternative interventions.

District nurses' attitudes towards involuntary treatment in dementia care at home: A cross-sectional study.

One in two persons living with dementia (PLWD) at home receive care which they resist to and/or have not given consent to, defined as involuntary treatment. District nurses play a key role in the use of involuntary treatment. However, little is known how their attitudes and opinions influence the use of involuntary treatment. This cross-sectional study aims to investigate the attitudes of district nurses towards the use of involuntary treatment in dementia care at home, determinants and their opinion about its restrictiveness and discomfort. Results show that district nurses perceive involuntary treatment as regular part of nursing care, having neither positive nor negative attitude towards its appropriateness. They consider involuntary treatment usage as moderately restrictive to PLWD and feel moderately uncomfortable when using it. These findings underscore the need to increase the awareness of district nurses regarding the negative consequences of involuntary treatment use to PLWD at home.

Prevention and reduction of involuntary treatment at home: A feasibility study of the PRITAH intervention.

Sometimes care is provided to a cognitively impaired person against the person's will, referred to as involuntary treatment. We developed the PRITAH intervention, aimed at prevention and reduction of involuntary treatment at home. PRITAH consists of a policy discouraging involuntary treatment, workshops, coaching by a specialized nurse and alternative interventions. A feasibility study was conducted including 30 professional caregivers. Feasibility was assessed by attendance lists (reach), a logbook (dose delivered and fidelity), evaluation questionnaires and focus group interviews (dose received, satisfaction & barriers). The workshops and coach were positively evaluated and the average attendance rate was 73%. Participants gained more awareness and knowledge and received practical tips and advice to prevent involuntary treatment. Implementation of the intervention was feasible with minor deviations from protocol. Recommendations for improvement included more emphasis on involvement of family caregivers and general practitioners and development of an extensive guideline to comply with the policy.

Professional and family caregivers' attitudes towards involuntary treatment in community-dwelling people with dementia.

AIMS: The aim of this study was to gain insight into professional and family caregivers' attitudes towards involuntary treatment in community-dwelling people with dementia (PwD). BACKGROUND: The number of PwD with complex care needs living at home is increasing rapidly. In some situations, caregivers provide care against the will of PwD, referred to as involuntary treatment, which includes non-consensual care, psychotropic medication and physical restraints. DESIGN: A cross-sectional study. METHODS: A total of 228 professional (nursing staff, general practitioners (GPs) and other healthcare professionals such as physical therapists and psychologists) and 77 family caregivers of PwD completed the Maastricht Attitude Questionnaire-Home Care. This questionnaire measures attitudes towards involuntary treatment and perceived restrictiveness of and experienced discomfort in using involuntary treatment. Data were collected in the Netherlands between June and November 2016. RESULTS: Family caregivers and GPs had more positive attitudes towards involuntary treatment than nursing staff and other healthcare professionals, indicating that they are more accepting of involuntary treatment. A more positive attitude was associated with higher perceived caregiver burden and being a family caregiver. Family caregivers and GPs found the use of involuntary treatment less restrictive and indicated feeling more comfortable when using these measures. CONCLUSION: It is important to account for the differences in attitudes and foster dialogue among professional and family caregivers to find common ground about alternatives to involuntary treatment. These results will inform the development of an intervention that aims to prevent involuntary treatment in home care.

Perceived added value of a decision support App for formal caregivers in community-based dementia care.

AIMS AND OBJECTIVES: To gain insight into the perceived added value of a decision support App for district nurses and case managers intended to support a problem assessment and the provision of advices on possible solutions to facilitate ageing in place of people with dementia, and to investigate how they would implement the App in daily practice. BACKGROUND: District nurses and case managers play an important role in facilitating ageing in place of people with dementia (PwD). Detecting practical problems preventing PwD from living at home and advising on possible solutions is complex and challenging tasks for nurses and case managers. To support them with these tasks, a decision support App was developed. METHODS: A qualitative study using semi-structured interviews was conducted. A photo-elicitation method and an interview guide were used to structure the interviews. The data were analysed according to the principles of content analysis. RESULTS: In five interviews with seven district nurses and case managers, the added value was described in terms of five themes: (a) providing a broader/better overview of possible solutions; (b) providing a guideline/checklist for problem assessment and advice on solutions; (c) supporting an in-depth problem assessment; (d) being a support tool for unexperienced case managers/district nurses; and (e) providing up-to-date information. The participants regarded the App as complementary to their current work procedure, which they would use in a flexible manner at different stages in the care continuum. CONCLUSIONS: The participants valued both parts, the problem assessment and the overview of possible solutions. An important requisite for the usage would be that the content is continuously updated. Before implementation of the App can be recommended, an evaluation of its effectiveness regarding decision-making should be conducted. RELEVANCE TO CLINICAL PRACTICE: This study underpins the need of nurses and case managers for decision support with regard to problem assessment and providing advices on possible solutions to facilitate ageing in place of PwD. There results also show the importance of listening to users experience and their perceived added value of decision support tools as this helps to explain the lack of statistically significant effects on quantitative outcome measure in contrast to a high willingness to use the App in a previous study.

Feasibility of DAIly NURSE: A nursing intervention to change nursing staff behaviour towards encouraging residents' daily activities and independence in the nursing home.

AIMS AND OBJECTIVES: To examine the feasibility of DAIly NURSE and a nursing intervention to encourage nursing home residents' daily activities and independence. BACKGROUND: Nursing home residents are mainly inactive during the day. DAIly NURSE was developed to change nursing behaviour towards encouraging nursing home residents' activities and independence by creating awareness. It consists of three components: education, coaching-on-the-job and policy. DESIGN: A mixed-method study. METHODS: The feasibility of DAIly NURSE in practice was tested in six psychogeriatric nursing home wards, using attendance lists (reach), evaluation questionnaires (fidelity, dose received and barriers), notes made by the researcher (dose delivered and fidelity) and a focus group interview (dose received and barriers) with nursing home staff (n = 8) at the end of the study. RESULTS: The feasibility study showed that all three components (education, coaching-on-the-job and policy) were implemented in practice. The attendance rate in the workshops was high (average: 82%). Nursing home staff were satisfied with the workshops (mean score 9 out of 10 points) and agreed that DAIly NURSE was feasible in daily nursing care practice. Recommendations to optimise the feasibility of DAIly NURSE included the following: Add video observations of a specific moment of the day to create awareness of nursing behaviour; educate all nursing staff of the ward during the workshops; and organise information meetings for family members before the start of the intervention. Nursing staff were satisfied with the intervention and provided recommendations for adjustments to the content of the three components. The most important adjustment is the use of video observations to create awareness of nursing staff behaviour. CONCLUSIONS: DAIly NURSE, consisting of education, coaching-on-the-job and policy, is feasible in nursing home practice. RELEVANCE TO CLINICAL PRACTICE: DAIly NURSE might help to change nursing behaviour towards encouraging residents' daily activities and independence.

Potentially inappropriate medication among people with dementia in eight European countries.

Objectives: to evaluate the frequency of potentially inappropriate medication (PIM) prescription among older people with dementia (PwD) from eight countries participating in the European study 'RightTimePlaceCare', and to evaluate factors and adverse outcomes associated with PIM prescription. Methods: survey of 2,004 PwD including a baseline assessment and follow-up after 3 months. Interviewers gathered data on age, sex, prescription of medication, cognitive status, functional status, comorbidity, setting and admission to hospital, fall-related injuries and mortality in the time between baseline and follow-up. The European Union(7)-PIM list was used to evaluate PIM prescription. Multivariate regression analysis was used to investigate factors and adverse outcomes associated with PIM prescription. Results: overall, 60% of the participants had at least one PIM prescription and 26.4% at least two. The PIM therapeutic subgroups most frequently prescribed were psycholeptics (26% of all PIM prescriptions) and 'drugs for acid-related disorders' (21%). PwD who were 80 years and older, lived in institutional long-term care settings, had higher comorbidity and were more functionally impaired were at higher risk of being prescribed two PIM or more. The prescription of two or more PIM was associated with higher chance of suffering from at least one fall-related injury and at least one episode of hospitalisation in the time between baseline and follow-up. Conclusions: PIM use among PwD is frequent and is associated with institutional long-term care, age, advanced morbidity and functional impairment. It also appears to be associated with adverse outcomes. Special attention should be paid to psycholeptics and drugs for acid-related disorders.

Development of a complex intervention to improve participation of nursing home residents with joint contractures: a mixed-method study.

BACKGROUND: Joint contractures in nursing home residents limit the capacity to perform daily activities and restrict social participation. The purpose of this study was to develop a complex intervention to improve participation in nursing home residents with joint contractures. METHODS: The development followed the UK Medical Research Council framework using a mixed-methods design with re-analysis of existing interview data using a graphic modelling approach, group discussions with nursing home residents, systematic review of intervention studies, structured 2-day workshop with experts in geriatric, nursing, and rehabilitation, and group discussion with professionals in nursing homes. RESULTS: Graphic modelling identified restrictions in the use of transportation, walking within buildings, memory functions, and using the hands and arms as the central target points for the intervention. Seven group discussions with 33 residents revealed various aspects related to functioning and disability according the International Classification of Functioning, Disability and Health domains body functions, body structures, activities and participation, environmental factors, and personal factors. The systematic review included 17 studies with 992 participants: 16 randomised controlled trials and one controlled trial. The findings could not demonstrate any evidence in favour of an intervention. The structured 2-day expert workshop resulted in a variety of potential intervention components and implementation strategies. The group discussion with the professionals in nursing homes verified the feasibility of the components and the overall concept. The resulting intervention, Participation Enabling CAre in Nursing (PECAN), will be implemented during a 1-day workshop for nurses, a mentoring approach, and supportive material. The intervention addresses nurses and other staff, residents, their informal caregivers, therapists, and general practitioners. CONCLUSIONS: In view of the absence of any robust evidence, the decision to use mixed methods and to closely involve both health professionals and residents proved to be an appropriate means to develop a complex intervention to improve participation of and quality of life in nursing home residents. We will now evaluate the PECAN intervention for its impact and feasibility in a pilot study in preparation for an evaluation of its effectiveness in a definitive trial. TRIAL REGISTRATION: German clinical trials register, reference number DRKS00010037 (12 February 2016).

Facilitating aging in place: A qualitative study of practical problems preventing people with dementia from living at home.

Although the majority of people with dementia wish to age in place, they are particularly susceptible to nursing home admission. Nurses can play an important role in detecting practical problems people with dementia and their informal caregivers are facing and in advising them on various ways to manage these problems at home. Six focus group interviews (n = 43) with formal and informal caregivers and experts in the field of assistive technology were conducted to gain insight into the most important practical problems preventing people with dementia from living at home. Problems within three domains were consistently described as most important: informal caregiver/social network-related problems (e.g. high load of care responsibility), safety-related problems (e.g. fall risk, wandering), and decreased self-reliance (e.g. problems regarding self-care, lack of day structure). To facilitate aging in place and/or to delay institutionalization, nurses in community-based dementia care should focus on assessing problems within those three domains and offer potential solutions.

Evaluation of a decision support app for nurses and case managers to facilitate aging in place of people with dementia. A randomized controlled laboratory experiment.

Detecting practical problems of persons with dementia (PwD) experience at home, and advising them on solutions to facilitate aging in place are complex and challenging tasks for nurses and case managers. In this two group randomized, controlled laboratory experiment, the efficacy of a decision support application aiming to increase nurses' and case managers' confidence in clinical judgment and decision-making was tested. The participants (N = 67) assessed a case of a PwD within the problem domains: self-reliance, safety and informal care, and provided suggestions for possible solutions. Participants used either their regular procedure with (intervention group) or without the App (control group) to conduct these tasks. No statistically significant difference was found on the primary outcome measure, the overall level of confidence. However, nurses and case managers highly recommended use of the App in practice. To explain these results, more research on the potential added value of the App is needed.

The role of nursing staff in the activities of daily living of nursing home residents.

The aim of this cross-sectional study was to explore the role of nursing staff in residents' activities. Nursing home residents (n = 723) were observed in their wards, randomly five times for one minute between 7 a.m. and 11 p.m. Resident's (in)activity and the role of nursing staff or others in this activity were recorded. Roles were defined as 'taking over the activity', 'giving support', or 'supervision'. Nurse observers were interviewed to obtain insight into their observation-experiences. Residents were observed in activities of daily living in 31% of all 3282 observations, and inactive in 57%. Nursing staff provided support in 51% of the observations and took over activities in 45%; supervision was rarely observed (4%). Nurse observers who knew the residents reported that a large part of activities were taken over unnecessarily. Based on these results, nursing staff are recommended to provide more supervision and support to optimize residents' activities and independence.

Needs of informal caregivers during transition from home towards institutional care in dementia: a systematic review of qualitative studies.

BACKGROUND: Alongside providing care, informal caregivers of people with dementia often need support and guidance themselves, especially during difficult periods such as the care-transition from home towards a nursing home. Knowledge on needs of informal caregivers during this period is sparse. This study aims to provide insight into problems and needs of informal caregivers caring for people with dementia during care-transition from home-based care to institutional long-term care. METHODS: A systematic electronic search in CINAHL, Cochrane, Medline, PsycINFO, Pubmed and Web of Knowledge. All qualitative articles up to September 2013 were considered. The included articles underwent a quality appraisal. Thematic analysis was used to analyze problems and needs described in the articles. RESULTS: Thirteen publications were included providing 14 topics comprising needs and problems of informal caregivers during the care-transition period. The most stated topics were: "emotional concerns" (e.g. grief and shame about the decision), "knowledge/information" (e.g. understanding the care system) and "support" (e.g. need for counseling). Similar topics were found prior and after admission, with examples specific to the either the home or nursing home situation. CONCLUSIONS: The care-transition period should be considered a continuum, as similar needs and problems were identified prior and after admission. This should be kept in mind in developing support and guidance for informal caregivers during this process. Whereas currently the situation prior and post admission are seen and treated as adjacent stages, they should be considered one integrated stage. Multicomponent programmes should be offered that are designed in a continuous way, starting prior to admission, and continuing after.

Changes in caregiver burden and health-related quality of life of informal caregivers of older people with Dementia: evidence from the European RightTimePlaceCare prospective cohort study.

AIMS: To describe differences in caregiver burden and health-related quality of life of informal caregivers of people with dementia in eight European countries and assess changes after transition from home to institutional long-term care. BACKGROUND: Country differences in the experience of burden and health-related quality of life are rarely described. DESIGN: Prospective cohort study. METHODS: Data on burden and health-related quality of life were collected at baseline (conducted between November 2010-April 2012) and follow-up (after 3 months) using face-to-face interviews. Two groups of informal caregivers included those: (1) of people with dementia recently admitted to institutional long-term care facilities; and those (2) of people with dementia receiving home care. Statistical analyses focused on descriptive comparisons between groups and countries. RESULTS: Informal caregivers of about 2014 were interviewed. Informal caregivers of people with dementia at home experienced more burden compared with informal caregivers of recently institutionalised people with dementia. Almost no differences in health-related quality of life were found between groups. Large differences between countries on outcomes were found. Informal caregivers of people with dementia who made the transition to an institutional long-term care facility experienced a statistically significant decrease in burden and psychological distress at follow-up. CONCLUSION: Cross-country differences may be related to differences in health and social care systems. Taking this into account, informal caregiver interventions need to be tailored to (country specific) contexts and (individual) needs. Findings highlight the positive impact of admission to institutional long-term care on informal caregiver well-being.

The association between positive-negative reactions of informal caregivers of people with dementia and health outcomes in eight European countries: a cross-sectional study.

AIM: To describe the associations between positive and negative reactions of informal caregivers of people with dementia and health outcomes across eight European Countries. BACKGROUND: Caring for someone with dementia may have implications for the caregiver's own health and for the care recipient. These consequences could be associated with caregivers' reactions to the process of care. DESIGN: Association study based on cross-sectional data. METHODS: Participants were people with dementia and their informal caregivers living at home or in long-term care institutions. Data were collected between November 2010-April 2012 using the Caregiver Reaction Assessment (with dimensions of self-esteem, lack of family support, financial problems, disrupted schedule and health problems) and associations were sought with informal caregiver burden, quality of life and psychological well-being and with dementia sufferers' neuropsychiatric symptoms, comorbidity and dependency in activities of daily living using correlation coefficients. RESULTS: Data from 2014 participants were used. Variability across countries was noted, as well as differences between care at home and in long-term care institutions. In general, self-esteem and lack of family support correlated with caregiver burden and psychological well-being. Associations were also found between disrupted schedule and caregiver burden, psychological well-being and quality of life. Health problems were clearly associated with caregiver burden, psychological well-being and quality of life. CONCLUSION: Study results support links between the reactions of informal caregivers of people with dementia and health outcomes. These may have implications in terms of how services are addressed.

Older persons with dementia at risk for institutionalization in eight European countries: a cross-sectional study on the perceptions of informal caregivers and healthcare professionals.

AIMS: To explore the perceptions of informal caregivers and healthcare professionals regarding potential reasons for the institutionalization of older persons with dementia in eight European countries. BACKGROUND: Healthcare professionals may have an important role in facilitating informal caregivers' decision-making regarding institutionalization. Little is known about the perceptions of informal caregivers and healthcare professionals prior to institutionalization. DESIGN: Cross-sectional survey in eight European countries (November 2010-January 2012). METHODS: Healthcare professionals reported why they clinically judged persons with dementia at risk for institutionalization. Informal caregivers reported potential reasons from their perspectives. Answers were openly coded and categorized. Variation between informal caregivers and healthcare professionals was investigated (agreement on at least one potential reason per case/proportion of maximum attainable kappa). RESULTS: Judgements of healthcare professionals and informal caregivers on 1160 persons with dementia were included. A total of 22 categories emerged. Approximately 90% of informal caregivers reported potential reasons. In 41% of the cases, informal caregivers and healthcare professionals agreed on at least one reason. Discrepancy was high for potential reasons related to caregiver burden. For the most frequent categories (caregiver burden, caregiver unable to provide care, neuropsychiatric symptoms, overall deterioration, care dependency), 24-41% of the attainable kappa was achieved. Differences between countries emerged indicating more favourable agreement in Finland, Sweden and Estonia and lowest agreement in England and Spain. CONCLUSION: Agreement between healthcare professionals and informal caregivers on potential reasons for institutionalization was low-to-moderate. Healthcare professionals are challenged to develop a detailed understanding of the perspectives and perceived burden of informal caregivers.