Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

© 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine Objectives To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries. Design Cross-sectional study. Setting People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). Participants A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. Measurements Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden. Results Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular nighttime behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence. Conclusion A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer

Samenwerkende Academische Netwerken Ouderenzorg (SANO) Academische Werkplaats Ouderenzorg Zuid-Limburg

De druk op de langdurige ouderenzorg neemt toe. Mede door de forse vergrijzing, het tekort aan personeel én de voortdurende implementatie van innovaties, ligt er een enorme uitdaging om de langdurige ouderenzorg toekomstbestendig te maken. Digitale en technologische ontwikkelingen spelen hierbij een relevante rol, mede omdat ze tot enorme hoeveelheden data leiden die worden verzameld. Al deze data, die veelal worden verzameld tijdens dagelijkse werkzaamheden, kunnen worden benut met het oog op het inzichtelijk maken en verbeteren van kwaliteit van zorg, kwaliteit van leven en kwaliteit van werken in de langdurige zorg. Mede door de inzet van vooruitstrevende analysemethoden, zijn er nieuwe mogelijkheden om kennis, en daarmee waarde, uit data te halen. Maar welke mogelijkheden bieden data eigenlijk en hoe zetten we dergelijke data om in kennis

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

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

Organisational determinants of the use of physical restraints: A multilevel approach

This paper reports a study of the relationship between the use of physical restraints with psycho-geriatric nursing home residents and the characteristics of organisations and residents. It is hypothesised that impairment in residents and organisational characteristics, such as a high workload of nursing staff and a low full-time equivalent (FTE) ratio on the wards, are associated with increased restraint use. In a cross-sectional study involving 15 Dutch psycho-geriatric nursing home wards, 432 residents were selected for participation, of which 371 actually participated. Restraint status was measured using observations. Other resident characteristics, such as cognitive status, were determined using the Minimum Data Set (MDS). Job characteristics, such as workload, were determined by different self-reported measures. Characteristics of the wards, such as the FTE ratio, were derived from the registration system of the wards. Physical restraints were used with 56% of the psycho-geriatric nursing home residents. Bivariate analysis showed that job and ward characteristics were not associated with restraint use. Bivariate and multilevel analysis showed that residents' characteristics, such as mobility and cognitive status were significantly associated with restraint use. Furthermore, multilevel analysis showed that higher job autonomy experienced by nursing staff and a higher FTE ratio on the wards were also associated with increased restraint use. In conclusion, job and ward characteristics were not as strongly associated as residents' characteristics with restraint use. Impairments in residents, such as immobility, were strongly related to the use of restraints. Therefore, education and support of nursing staff in caring for psycho-geriatric nursing home residents with poor mobility is recommended to reduce the use of physical restraints in nursing homes.The Netherlands Physical restraint Nursing home care Organisational characteristics Residents' characteristics

Comfort during the bed bath-A randomised crossover trial on the effect of washing without water versus water and soap in nursing students

Aims and objectives To compare the washing without water method with the water and soap method regarding comfort perceptions of the bed bath. Background Bathing affects nurses' and care recipients' comfort. Bedridden care recipients can be bathed in bed with water and soap or with washing without water products. Little is known about the differences between these two bed bath methods regarding comfort perceptions among care recipients and nurses. Design Crossover randomised laboratory-controlled trial, conducted from March 2018-November 2019, according to the CONSORT guidelines. Methods Nursing students were randomly allocated roles as a patient (who received both types of bed baths) or a nurse (who provided both types of bed baths). Also, the order in which the bed baths were received/provided was randomised. A total of 97 students were included in the analysis. Student patients filled out the Patient Evaluation of Emotional Comfort Experienced (PEECE) scale to measure emotional comfort and a single-item question on physical comfort after each bed bath. Student nurses filled out the Physical Demands scale after each bed bath to measure their physical comfort perceptions. Results No differences were found between the two bed bathing methods regarding student patients' emotional or physical comfort levels. Among student nurses, the washing without water method was less physically demanding than the water and soap method. Conclusions Taking into account time-efficiency and physical comfort for nurses, washing without water seems to be a valuable alternative to water and soap from a care recipient comfort perspective, which should be assessed in a clinical setting in future research. Relevance to clinical practice The washing without water method is less physically demanding for nurses and takes less time. It does not have a detrimental effect on care recipients' emotional and physical comfort. The trial is registered at (ID = NL6787)

Quality of care and quality of life of people with dementia living at green care farms: a cross-sectional study

Abstract Background Many countries are introducing smaller, more home-like care facilities that represent a radically new approach to nursing home care for people with dementia. The green care farm is a new type of nursing home developed in the Netherlands. The goal of this study was to compare quality of care, quality of life and related outcomes in green care farms, regular small-scale living facilities and traditional nursing homes for people with dementia. Methods A cross-sectional design was used. Three types of nursing homes were included: (1) green care farms; (2) regular small-scale living facilities; (3) traditional nursing homes. All participating nursing homes were non-profit, collectively funded nursing homes in the south of the Netherlands. One hundred and fifteen residents with a formal diagnosis of dementia were included in the study. Data on quality of care was gathered and consisted of outcome indicators (e.g. falling incidents, pressure ulcers), structure indicators (e.g. hours per resident per day), and process indicators (e.g. presence, accessibility and content of protocols on care delivery). Furthermore, questionnaires on cognition, dependence in activities of daily living, quality of life, social engagement, neuropsychiatric symptoms, agitation, and depression were used. Results Data showed that quality of care was comparable across settings. No large differences were found on clinical outcome measures, hours per resident per day, or process indicators. Higher quality of life scores were reported for residents of green care farms in comparison with residents of traditional nursing homes. They scored significantly higher on the Quality of Life – Alzheimer’s disease Scale (p  0.7). No differences with regular small-scale living facilities were found. Conclusions Green care farms seem to be a valuable alternative to existing nursing homes. This is important as people with dementia are a heterogeneous group with varying needs. In order to provide tailored care there also is a need for a variety of living environments

Dementia care redesigned: effects of small-scale living facilities on residents, their family caregivers, and staff

Objective: The purpose of this study was to evaluate the effects of small-scale living facilities in dementia care on residents, family caregivers, and staff. Design: This was a quasi-experimental study including 2 types of institutional nursing care: small-scale living facilities (experimental group), and regular psychogeriatric nursing home wards (control group). Three measures were conducted: at baseline and followups after 6 and 12 months. Setting: Twenty-eight houses in small-scale living facilities and 21 regular psychogeriatric nursing home wards. Participants: In total, 259 residents were included in the study: 124 in small-scale living facilities and 135 controls, matched on cognitive and functional status. Furthermore, 229 family caregivers were included and 305 staff members. Measurements: For residents, main outcome measures were quality of life, neuropsychiatric symptoms, and agitation. Main outcome measures for family caregivers included perceived burden, satisfaction, and involvement with care. Main outcome measures for staff were job satisfaction and motivation. Results: No effects were found for residents’ total quality of life, neuropsychiatric symptoms, and agitation. Family caregivers in small-scale living reported significantly less burden (adjusted mean difference 0.8, 95% CI 0.1–1.5) and were more satisfied with nursing staff (0.3, 0.2–0.5) than family caregivers in regular wards. No differences were found in their involvement with care. Overall, no significant differences were found for staff’s job satisfaction and motivation, although subgroup analyses using contrast groups (regarding typical small-scale living and regular wards) revealed more job satisfaction (2.0, 0.5-3.5) and motivation (0.6, 0.0–1.3) in small-scale living compared with regular wards. Conclusion: This study was unable to demonstrate convincing overall effects of small-scale living facilities. Because governmental policies and, in some countries, financial support, are increasingly aimed at providing small-scale, homelike care, it is suggested that this may not be a final solution to accomplish high-quality dementia care and that other options should be considered. Copyright © 2010 American Medical Directors Association, Inc