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Objectives: The 'disability paradox' (DP) suggests that most older adults maintain subjective well-being (SWB) despite functional decline. However, this may depend the SWB component: positive affect (PA), negative/depressed affect (NA/DA) or life satisfaction (LS). We assessed trajectories of these components in older adults with substantial functional decline. Methods: Data originated from the Longitudinal Aging Study Amsterdam (N = 2545) observed during 1992–2008. Using latent class growth analysis, we distinguished a group with substantial functional decline and examined their SWB trajectories and individual characteristics. Results: The DP occurred more frequently for DA (Men:73%, Women:77%) and LS (Men:14%, Women:83%) than for PA (Men:26%, Women:17%). Higher perceived control (mastery) emerged as the most consistent factor associated with higher odds of the DP. Discussion: We provide a nuanced view of the DP, shifting the question from whether it exists to for which dimension of SWB and for whom it is more or less apparent. [ABSTRACT FROM AUTHOR]

Objective: To avoid restraints and involuntary care caregivers should be aware if and how a patient resists care. This article focuses on behavioural expressions of people with severe dementia in nursing homes that are interpreted by their formal and informal caregivers as possible expressions of their experience of involuntary care. Method: Concept mapping was used, following five steps: (1) brainstorming, (2) rating, (3) sorting, (4) statistical analysis & visual representation and (5) interpretation. Specialists (n = 12), nurses (n = 23) and relatives (n = 13) participated in separate groups. Results: The views generated are grouped into clusters of behaviour, presented in graphic charts for each of the respondent groups. The large variety of behavioural symptoms includes, in all groups, not only the more obvious and direct behavioural expressions like aggression, resistance and agitation, but also more subtle behaviour such as sorrow, general discomfort or discontent. Conclusion(s): In the interpretation of behavioural symptoms of people with severe dementia it is important to take into account the possibility of that person experiencing involuntary care. Increased awareness and understanding of the meaning and consequences of the behavioural expressions is an important step in improving dementia care by avoiding restraints and involuntary care to its maximum. [ABSTRACT FROM AUTHOR]

Objective: Pain is a frequent long-term consequence of stroke, but its relation to emotional and social well-being is poorly studied in stroke populations. We aimed to identify the prevalence of substantial pain among institutionalized stroke patients and to explore its relation to emotional distress (ED) and low social engagement (SE).Methods: In a cross-sectional design, we collected data of 274 chronic stroke patients in Dutch nursing homes. Observation lists were filled out in structured interviews with qualified nurse assistants who knew the residents well. Pain and SE were measured with the Resident Assessment Instrument for Long-term Care Facilities, and ED was measured with the Neuropsychiatric Inventory Questionnaire (NPIQ).Results: Substantial pain was present in 28% of the residents, mostly located in the affected body side (68%). Multilevel regression analyses revealed that this pain was independently related to a 60% increase in NPIQ score (β 3.18 [1.84-4.53]) and to clinically relevant symptoms of delusions (odds ratio [OR] 8.45 [1.82-39.05]), agitation/aggression (OR 3.82 [1.76-8.29]), depression (OR 3.49 [1.75-6.98]), and anxiety (OR 2.32 [1.08-4.97]). Substantial pain was associated with low SE when adjusted for clinical covariates (OR 4.25 [1.72-10.53]), but only in residents with no/mild or severe cognitive impairment. This relation disappeared when additionally corrected for NPIQ score (OR 1.95 [0.71-5.39]).Conclusions: Pain is a serious and multidimensional problem among institutionalized stroke patients. It is related to increased ED, which in turn can be a pathway to low SE as an indicator of social vulnerability. Future research should reveal how pain management in nursing homes can be tailored to the needs of this patient group. [ABSTRACT FROM AUTHOR]

Objectives The aim of this study was to investigate the effects of group living homes on quality of life and functioning of people with dementia. Methods The study had a quasi-experimental design with a baseline measurement on admission and an effect measurement six months later. Participants were 67 residents in 19 group living homes and 97 residents in seven traditional nursing homes. DQOL and QUALIDEM measured quality of life, functional status was examined with MMSE, IDDD, RMBPC, NPI-Q and RISE from RAI. Use of psychotropic drugs and physical restraints was also assessed. Linear and logistic regression analyses analyzed the data. Results After adjustment for differences in baseline characteristics, residents of group living homes needed less help with ADL and were more socially engaged. There were no differences in behavioral problems or cognitive status. Also after adjusting, two of the 12 quality of life subscales differed between the groups. Residents of group living homes had more sense of aesthetics and had more to do. While there were no differences in prescription of psychotropic drugs, residents of group living homes had less physical restraints. Conclusions Group living homes had some beneficial effects on its residents, but traditional nursing homes performed well as well. Possible study limitations included the baseline differences between the study groups and the use of different informants on T0 and T1. Future nursing home care may very well be a combination of the best group living care and traditional nursing home care have to offer. Copyright © 2009 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: Huntington disease (HD) has a poor prognosis. Decision-making capacity and communication ability may become impaired as the disease progresses. Therefore, HD patients are encouraged to engage in advance care planning (ACP). Elderly care physicians (ECPs) can play an important role in ACP in HD patients. However, little is known about their experiences in this role. The aim of this study is to gain insight into how ECPs practice ACP with HD patients., Design: A qualitative interview study., Setting and Participants: Nine ECPs working in HD-specialized nursing homes in the Netherlands., Methods: We conducted semistructured interviews with ECPs between June 2018 and July 2020., Results: Two phases could be identified in the process of ACP. In the first phase, when the feared future seems to be far away, the ECP asks about the patient's wishes for the future in an accommodating manner. In the second phase, when the feared future is closer, future medical treatment and care becomes less hypothetical. Agreement has to be reached on upcoming treatment decisions. In this phase, the ECP takes a more guiding role, and consequently encounters more difficulties, such as maintaining a positive patient/family-physician relationship while dealing with disagreements with patient or family. Most participants shared their experiences with euthanasia when asked about ACP. When making a comparison of ACP between HD patients and patients with other neurodegenerative disorders in nursing homes, the ECPs emphasized the similarities., Conclusions and Implications: ACP in HD can be classified into 2 phases, which differ in ECPs' approach and the complexity experienced by the ECP. Awareness of this finding may help to further develop training and education in ACP, including dealing with euthanasia, to make ECPs feel better equipped in practicing ACP in HD., (Copyright © 2023 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: Advance care planning (ACP) becomes more relevant with deteriorating health or increasing age. People might be more inclined to engage in ACP as they feel that they are approaching end of life. The perception of approaching end of life could be quantified as subjective remaining life expectancy (SRLE)., Objectives: First, to describe the prevalence of ACP with health care providers or written directives ("formal engagement in ACP") and ACP with loved-ones ("informal engagement in ACP") among older persons in the general population in The Netherlands. Second, to assess the association between SRLE and engagement in ACP., Methods: Cross-sectional study using data from the Longitudinal Aging Study Amsterdam (LASA) measurement wave of 2015-2016. Participants (n = 1585) were aged ≥ 57 years., Results: Median age was 69.4 years (IQR: 64.1-76.7), and median SRLE 25.9 years (17.7-36.0). Formal engagement in ACP was present in 32.6%, informal without formal engagement in 45.8%, and 21.6% was not engaged in ACP. For respondents with SRLE < 25 years, there was a nonstatistically significant association between SRLE and engagement in ACP (aOR: 0.97; 95% CI: 0.93-1.01; P= .088), and a statistically significant, small association with formal vs. informal engagement in ACP (aOR: 0.96; 0.93-0.99; P= .009). For respondents with SRLE ≥ 25 years there was no association between SRLE and engagement in ACP., Conclusion: The perception of approaching end of life is associated with higher prevalence of formal engagement in ACP, but only for those with SRLE < 25 years. For clinicians, asking patients after their SRLE might serve as a starting point to explore readiness for ACP., (Copyright © 2021 The Authors. Published by Elsevier Inc. All rights reserved.)

Objective: To describe the feasibility of a geriatric multidisciplinary outpatient rehabilitation program, developed in Vivium Naarderheem., Design: A prospective pilot study using a pretest-posttest design with measurements of the level of (social) participation, health related quality of life, and caregiver strain at the start (T0) and the end (T1) of the program. Feasibility was studied by structured interviews with participants, professionals and management., Results: We included 18 patients, fifteen of which were admitted after stroke. The program was highly appreciated by patients. Management and professionals thought that factors of influence on the program were transportation of patients, adequate planning and deployment of staff, and adequate financing. The program was regarded feasible. Although some patients reported a higher level of participation, the only statistically significant finding was a deterioration in self-perceived health., Conclusion: In this study most of the patients participated after stroke. The geriatric multidisciplinary outpatient rehabilitation program, following inpatient geriatric rehabilitation, was highly appreciated by patients, and considered feasible by management and professionals.

Aim: To explore stroke patients needs of care after discharge from hospital or rehabilitation facility., Method: Semi-structured interviews with twenty stroke patients and their partners in the region Midden-Kennemerland in the Netherlands., Results: 'That's when it really begins'; at home it becomes clear what the real consequences of the stroke are on daily life. After returning home patients would have liked to (1) have had more information/support and they have a need for support for a long time after their stroke; (2) have had the possibility to get support later on (after having said 'no' in the first place). On the other hand there are (3) patients who are inclined to search for solutions by themselves., Conclusion: Only after returning home stroke patients and their partners can really assess what their need for care is. Therefore the need for care of stroke patients should be assessed after a period of time after the patients return home. The care should be available for a long time after the stroke. Because patients don't realize that they can get help for the neuropsychological consequences, it is important that the initiative to organize the care lies in the hands of the caregivers.

Background: Surveillance technology such as tag and tracking systems and video surveillance could increase the freedom of movement and consequently autonomy of clients in long-term residential care settings, but is also perceived as an intrusion on autonomy including privacy., Objective: To explore how clients in residential care experience surveillance technology in order to assess how surveillance technology might influence autonomy., Setting: Two long-term residential care facilities: a nursing home for people with dementia and a care facility for people with intellectual disabilities., Methods: Ethnographic field study., Ethical Considerations: The boards representing clients and relatives/proxies of the clients were informed of the study and gave their written consent. The clients' assent was sought through a special information leaflet. At any time clients and/or proxy were given the option to withdraw from the study. The research protocol was also reviewed by a medical ethics committee., Findings: Our findings show a pattern of two themes: (1) coping with new spaces which entailed clients: wandering around, getting lost, being triggered, and retreating to new spaces and (2) resisting the surveillance technology measure because clients feel stigmatized, missed the company, and do not like being "watched.", Conclusion: Client experiences of surveillance technology appear to entail a certain ambivalence. This is in part due to the variety in surveillance technology devices, with each device bringing its own connotations and experiences. But it also lies in the devices' presupposition of an ideal user, which is at odds with the actual user who is inherently vulnerable. Surveillance technology can contribute to the autonomy of clients in long-term care, but only if it is set in a truly person-centered approach., (© The Author(s) 2014.)

Aim: To explore the role of nursing staff's person-centredness caring for people with dementia in relation to their work environment and job-related well-being., Background: Given the development towards person-centred care and labour force issues, research has recently focused on the effect of person-centredness on nursing staff's well-being. Findings from occupational stress research suggest that employees' personal characteristics, such as person-centredness, can moderate the impact particular job characteristics have on their job-related well-being., Design: Cross-sectional survey., Methods: A national survey was conducted among healthcare staff (n = 1147) in 136 living arrangements for people with dementia in the Netherlands (2008-2009). Hierarchical regression analyses were used., Results: Person-centredness moderates the relationship between coworker support and three outcomes of job-related well-being and between supervisor support and two of these outcomes. For highly person-centred nursing staff, coworker support was found to have a weaker impact and supervisor support to have a stronger impact on their job-related well-being. In addition, direct effects showed that person-centredness was weakly associated with more job satisfaction, more emotional exhaustion and more strongly with more personal accomplishment., Conclusion: Nursing staff's person-centredness does play a modest role in relation to job characteristics and job-related well-being. Findings indicate that person-centredness is not only beneficial to residents with dementia as found earlier, but also for nursing staff themselves; specifically, in case nursing staff members feel supported by their supervisor. Since a more person-centred workforce feels more competent, further implementation of person-centred care might have a positive impact on the attractiveness of the profession., (© 2014 John Wiley & Sons Ltd.)

Objectives: Apathy is a frequent neuropsychiatric consequence of stroke. In the under-researched population of institutionalized stroke patients, we aimed to explore the prevalence of apathy, its clinical correlates, and the relation to the amount of stimulating activities in the nursing home (NH)., Design: A cross-sectional, observational study., Setting: Dutch NHs., Participants: 274 chronic stroke patients., Measurements: Data were collected through observation lists that were filled out in structured interviews with qualified nurse assistants who knew the residents well. The lists comprised the NH-version of the Apathy Evaluation Scale (AES10), the Barthel Index, the Neuropsychiatric Inventory Questionnaire, and sections of the Resident Assessment Instrument for Long-Term Care Facilities. Attending physicians and therapists provided additional information., Results: Apathy (AES10 score ≥30) was present in 28% of residents. Multilevel regression analyses revealed that this apathy was independently related to (moderate, severe) cognitive impairment (odds ratio [OR] 11.30 [95% confidence interval (CI): 4.96-25.74], OR 5.54 [95% CI: 2.48-12.40]), very severe ADL-dependency (OR 12.10 [95% CI: 1.35-108.66]), and being >12 hours per day in bed (OR 2.10 [95% CI: 1.07-4.13]). It was not related to depressive mood symptoms (OR 1.75 [95% CI: 0.91-3.37]). Only in residents aged less than 80 years were a higher amount of activities independently related to a lower AES10 score (-0.70 [95% CI: -1.18 to -0.20] points per four extra activities in a 4-week period)., Conclusions: Apathy is prevalent in largely one-quarter of institutionalized stroke patients, and that is most strongly related to cognitive impairment in this explorative study. We discuss the need for research on the relation with distinct dimensions of depression and fatigue as partly overlapping constructs, and on (individualized) stimulating activities as a possible intervention method., (Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Purpose: To identify factors in the early post-stroke period that have a predictive value for a poor outcome, defined as institutionalization or severe disability., Methods: MEDLINE, PSYCINFO, EMBASE and CINAHL were systematically searched for observational cohort studies in which adult and/or elderly stroke patients were assessed ≤ 1 month post-stroke and poor outcome was determined after a follow-up of ≥ 3 months., Results: Thirty three articles were selected from 4063 records, describing 27 independent cohort studies. There are rather consistent findings that greater age, a more severe stroke (measured through a clinical evaluation scale), the presence of urinary incontinence (with impaired awareness) and a larger stroke volume (measured through brain imaging techniques) predict poor stroke outcome. In contrast to clinical expectations, the prognostic value of ADL-dependency and impaired cognition remains unclear, and factors in the domains of emotional and communicative functioning rarely feature. Studies using a selected group of stroke patients tended to identify different predictors., Conclusions: The current evidence is insufficient for the development of a clinical prediction tool that is better than physicians' informal predictions. Future research should focus on the selection of optimal screening instruments in multiple domains of functioning, including the timing of assessment. We suggest developing prediction tools stratified by more homogeneous, clinically distinguished stroke subtypes., Implications for Rehabilitation: A reliable prognosis soon after a stroke is highly relevant to patients who ultimately have a poor outcome, because it enables early planning of care tailored to their needs. In view of the development of a clinical prediction tool that is better than physicians' informal predictions, future research should focus on optimal screening instruments in multiple domains of functioning, including emotional and communicative functioning. Clinical prediction tools stratified by more homogeneous, clinically distinguished stroke subtypes, could enable more accurate prognosis in individual stroke patients.

Objectives: In view of the development of an integrated care and treatment program for institutionalized stroke patients tailored to their needs, we aimed to explore their status of functioning in the physical, cognitive, emotional, communicative and social domains. In addition, we explored the relation between status of functioning and stroke characteristics., Design: A cross-sectional, observational study., Setting: Dutch nursing homes (NHs)., Participants: Residents with stroke as main diagnosis for NH-admission, who experienced a stroke ≥3 months ago and stayed ≥1 month in a long term care ward., Measurements: Attending physicians provided information about stroke subtype, stroke location and time post-stroke. Status of functioning was measured through an observation list comprising the Barthel Index, the Neuropsychiatric Inventory Questionnaire, and sections of the Resident Assessment Instrument for Long-Term Care Facilities. The list was filled out in a structured interview with a qualified nurse assistant who knew the resident well., Results: We included 274 residents (mean age 76.6, 58.4% female). The stroke that caused NH-dependency was in 81.3% ischemic, and in 49.8% right-sided. Median time post-stroke was 47 months; 90.9% of the residents were severely dependent in basic activities of daily living and 58% were in pain. Nearly half of the residents showed moderate (24.4%) or severe (23%) cognitive impairment. Irritability (52.9%), depressive symptoms (52.6%) and apathy (34.3%) occurred as the most frequent neuropsychiatric symptoms; 27.7% had a poor ability to express themselves and 30.3% had a low social engagement. We found more severe cognitive impairment, agitation/aggression and poor expression in left-sided strokes, more nighttime behavioral disturbances and delusions in right-sided strokes, and lower social engagement in residents with the largest time-interval post-stroke., Conclusion: This study among institutionalized stroke patients in Dutch NHs revealed very high prevalence of impairments on all domains of functioning, above the well-known severe disabilities in basic activities of daily living. The monitoring and management of both pain and neuropsychiatric symptoms should be key elements in an integrated care and treatment program., (Copyright © 2012 American Medical Directors Association. Published by Elsevier Inc. All rights reserved.)

Background: Healthcare workers in nursing homes are faced with high job demands that can have a detrimental impact on job-related outcomes, such as job satisfaction. Job resources may have a buffering role on this relationship. The Demand-Control-Support (DCS) Model offers a theoretical framework to study how specific job resources can buffer the adverse effects of high demands, and can even activate positive consequences of high demands., Objectives: The present study tests the moderating (i.e. buffering and activating) effects of decision authority and coworker- and supervisor support that are assumed by the hypotheses of the DCS Model., Design: A national cross-sectional survey was conducted with an anonymous questionnaire., Setting: One hundred and thirty six living arrangements that provide nursing home care for people with dementia in the Netherlands., Participants: Fifteen healthcare workers per living arrangement. In total, 1147 people filled out the questionnaires (59% response rate)., Methods: Hierarchical multilevel regression analyses were conducted to test the assumption that the effect of job demands on the dependent variables is buffered or activated the most when both decision authority and social support are high. This moderation is statistically represented by three-way interactions (i.e. demands×authority×support), while lower-order effects are taken into account (i.e. two-way interactions). The hypotheses are supported when three-way interaction effects are found in the expected direction. The dependent variables studied are job satisfaction, emotional exhaustion, and personal accomplishment., Results: The proposed buffering and activation hypotheses of the DCS Model were not supported in our study. Three-way interaction effects were found for emotional exhaustion and personal accomplishment, though not in the expected direction. In addition, two-way interaction effects were found for job satisfaction and emotional exhaustion. Decision authority was found to buffer the adverse effect of job demands and to activate healthcare staff. Supervisor support was found to buffer the adverse effect of job demands on emotional exhaustion in situations with low decision authority. Finally, coworker support was found to have an adverse effect on personal accomplishment in high strain situations., Conclusions: Findings reveal that decision authority in particular makes healthcare workers in nursing homes less vulnerable to adverse effects of high job demands, and promotes positive consequences of work., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

Background: Working with surveillance technology as an alternative to traditional restraints creates obvious differences in the way care is organised. It is not clear whether professional caregivers find working with surveillance technology useful and workable and whether surveillance technology is indeed used to diminish restraint use., Objectives: The aim of this study was to obtain an insight into the view of Dutch dementia care professionals on the feasibility of surveillance technology as an alternative to physical restraints., Design: Qualitative study., Setting: The study was carried out in seven nursing homes for people with dementia in The Netherlands., Participants and Methods: Semi-structured interviews were held with nine key persons from seven nursing homes for people with dementia. Also, six focus group discussions were held with groups of nurses and two focus group discussions were held with multidisciplinary teams., Results: The dementia care professionals named three different ways in which surveillance technology can be used: to provide safety in general, to provide additional safety, and to provide more freedom for the residents. In addition to this, the dementia care professionals mentioned four limitations in the use of surveillance technology: it is unable to prevent falling, it cannot guarantee quick help, it does not always work properly, and it could violate privacy., Conclusion: Dementia care professionals consider surveillance technology supplemental to physical restraints, rather than as an alternative. Improvement of devices and education of care professionals might increase the support for using surveillance technology as an alternative to physical restraints., (Copyright © 2011 Elsevier Ltd. All rights reserved.)

Objective: In this follow-up study, the long-term influence of group living homes (GLHs) on informal caregiver distress was compared with modern yet regular nursing homes (NHs)., Method: Informal caregivers of GLH (N = 37) and NH residents (N = 49) were studied at the time of admission, 6 months thereafter, and approximately 24 months after admission. Repeated measures of ANOVA were performed to study group-by-time effects on psychopathology, role overload, and feelings of competence., Result: All outcomes of psychological distress in GLH caregivers showed significantly greater decline compared with NH caregivers during the first six months after admission. The course of psychological distress stabilized in both caregiver groups after six months., Conclusion: GLHs may have played a role in reducing caregiver burden during the first six months after the nursing home admission of the care recipient. The stabilization of caregivers' psychological distress between T1 and T2 may indicate that there is no further room for improvement in the GLH and NH groups after six months. The implication would be that both GLHs and NHs succeeded in keeping caregivers' distress relatively low over the long term. More knowledge is needed on whether and how caregivers' psychological distress after institutionalization of the care recipient can be reduced to a greater extent.

Objective: Older adults with severe mental disorders experience major dissatisfaction with conditions of life that are connected with aging. To assist them in developing a coherent, meaningful life-story and to improve their life satisfaction, we conducted a pilot evaluation of a creative reminiscence program called Searching for meaning in life., Methods: One week before and one week after the intervention 36 participants from three psychiatric hospitals and one sheltered housing program were interviewed. Life satisfaction was measured with the Manchester Short Assessment of Quality of Life (MANSA) and the Philadelphia Geriatric Center Moral Scale (PGCMS). At follow-up questions were also asked about the intervention., Results: About 78% of the participants completed the course. Most of them were satisfied with the course (74%). The overall sample showed significantly more life satisfaction after the intervention. Participants with a psychotic disorder also improved significantly in life satisfaction but at the same time their depressive symptoms increased significantly. Participants with a moderate to high level of depressive symptoms at baseline had relatively favorable outcomes. Their life satisfaction had improved significantly and they especially had a better attitude toward their aging., Conclusion: The program is feasible and acceptable for adults with severe mental illness and it has potential benefits for them. More research is needed to find out what explains the increase of depressive symptoms for participants with psychotic disorders.