The relationship between small-scale care and activity involvement of residents with dementia

Background: Nursing home care for people with dementia is increasingly organized in small-scale care settings. This study focuses on the question of how small-scale care is related to the overall activity involvement of residents with dementia, and their involvement in different types of activities. As several studies have indicated, activity involvement is important for the quality of life of residents. Methods: Data were derived from the first measurement cycle (2008/2009) of the Living Arrangements for people with Dementia study, in which 136 care facilities and 1,327 residents participated. The relationship between two indicators of small-scale dementia care (group living home care characteristics, and the total number of residents with dementia in the facility) and activity involvement (Activity Pursuit Patterns of the Resident Assessment Instrument Minimum Data Set) were studied with multilevel multiple regression analyses. All analyses were adjusted for the residents' age, sex, neuropsychiatric symptoms, and dependency on the activities of daily living. Results: Residents of care facilities with more group living home care characteristics were more involved in overall and preferred activities. Furthermore, they were involved in more diverse activities. Overall, no relationship was found between the number of residents at the facility and activity involvement. Conclusions: These results indicate that small-scale dementia care has a positive effect on activity involvement of residents. The current study also sheds light on the lack of activity involvement of many residents with dementia, especially those who are older, male, and with higher dependency. © International Psychogeriatric Association 2012

Learning from serum markers reflecting endothelial activation:longitudinal data in childhood-onset systemic lupus erythematosus

Objectives In childhood-onset SLE (cSLE), patients have an increased risk of premature atherosclerosis. The pathophysiological mechanisms for this premature atherosclerosis are not yet completely understood, but besides traditional risk factors, the endothelium plays a major role. The first aim of this study was to measure levels of SLE-associated markers involved in endothelial cell (EC) function and lipids in a cSLE cohort longitudinally in comparison with healthy controls (HC). Next aim was to correlate these levels with Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) and nailfold capillaroscopic patterns. Methods Blood serum samples, videocapillaroscopy images and patient characteristics were collected in a multicentre longitudinal cSLE cohort and from age and sex comparable HC. Disease activity was evaluated by SLEDAI. A total of 15 EC markers and six lipids were measured in two longitudinal cSLE samples (minimum interval of 6 months) and in HC. Nailfold videocapillaroscopy images were scored according to the guidelines from the EULAR Study Group on Microcirculation in Rheumatic Diseases. Results In total, 47 patients with cSLE and 42 HCs were analysed. Median age at diagnosis was 15 years (IQR 12-16 years). Median time between t=1 and t=2 was 14.5 months (IQR 9-24 months). Median SLEDAI was 12 (IQR 6-18) at t=1 and 2 (IQR 1-4) at t=2. Serum levels of angiopoietin-2, CCL2, CXCL10, GAS6, pentraxin-3, thrombomodulin, VCAM-1 and vWF-A2 were elevated in cSLE compared with HC at t=1. While many elevated EC markers at t=1 normalised over time after treatment, several markers remained significantly increased compared with HC (angiopoietin-2, CCL2, CXCL10, GAS6, thrombomodulin and VCAM-1). Conclusion In serum from patients with cSLE different markers of endothelial activation were dysregulated. While most markers normalised during treatment, others remained elevated in a subset of patients, even during low disease activity. These results suggest a role for the dysregulated endothelium in early and later phases of cSLE, possibly also during lower disease activity.</p

Increasing the etanercept dose in a treat-to-target approach in juvenile idiopathic arthritis:does it help to reach the target? A post-hoc analysis of the BeSt for Kids randomised clinical trial

Background: Etanercept has been studied in doses up to 0.8 mg/kg/week (max 50 mg/week) in juvenile idiopathic arthritis (JIA) patients. In clinical practice higher doses are used off-label, but evidence regarding the relation with outcomes is lacking. We describe the clinical course of JIA-patients receiving high-dose etanercept (1.6 mg/kg/week; max 50 mg/week) in the BeSt for Kids trial. Methods: 92 patients with oligoarticular JIA, RF-negative polyarticular JIA or juvenile psoriatic arthritis were randomised across three treat-to-target arms: (1) sequential DMARD-monotherapy (sulfasalazine or methotrexate (MTX)), (2) combination-therapy MTX + 6 weeks prednisolone and (3) combination therapy MTX + etanercept. In any treatment-arm, patients could eventually escalate to high-dose etanercept alongside MTX 10mg/m2/week. Results: 32 patients received high-dose etanercept (69% female, median age 6 years (IQR 4–10), median 10 months (7–16) from baseline). Median follow-up was 24.6 months. Most clinical parameters improved within 3 months after dose-increase: median JADAS10 from 7.2 to 2.8 (p = 0.008), VAS-physician from 12 to 4 (p = 0.022), VAS-patient/parent from 38.5 to 13 (p = 0.003), number of active joints from 2 to 0.5 (p = 0.12) and VAS-pain from 35.5 to 15 (p = 0.030). Functional impairments (CHAQ-score) improved more gradually and ESR remained stable. A comparable pattern was observed in 11 patients (73% girls, median age 8 (IQR 6–9)) who did not receive high-dose etanercept despite eligibility (comparison group). In both groups, 56% reached inactive disease at 6 months. No severe adverse events (SAEs) occurred after etanercept dose-increase. In the comparison group, 2 SAEs consisting of hospital admission occurred. Rates of non-severe AEs per subsequent patient year follow-up were 2.27 in the high-dose and 1.43 in the comparison group. Conclusions: Escalation to high-dose etanercept in JIA-patients who were treated to target was generally followed by meaningful clinical improvement. However, similar improvements were observed in a smaller comparison group who did not escalate to high-dose etanercept. No SAEs were seen after escalation to high-dose etanercept. The division into the high-dose and comparison groups was not randomised, which is a potential source of bias. We advocate larger, randomised studies of high versus regular dose etanercept to provide high level evidence on efficacy and safety. Trial registration: Dutch Trial Register; NTR1574; 3 December 2008; https://onderzoekmetmensen.nl/en/trial/26585.</p

Increasing the etanercept dose in a treat-to-target approach in juvenile idiopathic arthritis:does it help to reach the target? A post-hoc analysis of the BeSt for Kids randomised clinical trial

Background: Etanercept has been studied in doses up to 0.8 mg/kg/week (max 50 mg/week) in juvenile idiopathic arthritis (JIA) patients. In clinical practice higher doses are used off-label, but evidence regarding the relation with outcomes is lacking. We describe the clinical course of JIA-patients receiving high-dose etanercept (1.6 mg/kg/week; max 50 mg/week) in the BeSt for Kids trial. Methods: 92 patients with oligoarticular JIA, RF-negative polyarticular JIA or juvenile psoriatic arthritis were randomised across three treat-to-target arms: (1) sequential DMARD-monotherapy (sulfasalazine or methotrexate (MTX)), (2) combination-therapy MTX + 6 weeks prednisolone and (3) combination therapy MTX + etanercept. In any treatment-arm, patients could eventually escalate to high-dose etanercept alongside MTX 10mg/m2/week. Results: 32 patients received high-dose etanercept (69% female, median age 6 years (IQR 4–10), median 10 months (7–16) from baseline). Median follow-up was 24.6 months. Most clinical parameters improved within 3 months after dose-increase: median JADAS10 from 7.2 to 2.8 (p = 0.008), VAS-physician from 12 to 4 (p = 0.022), VAS-patient/parent from 38.5 to 13 (p = 0.003), number of active joints from 2 to 0.5 (p = 0.12) and VAS-pain from 35.5 to 15 (p = 0.030). Functional impairments (CHAQ-score) improved more gradually and ESR remained stable. A comparable pattern was observed in 11 patients (73% girls, median age 8 (IQR 6–9)) who did not receive high-dose etanercept despite eligibility (comparison group). In both groups, 56% reached inactive disease at 6 months. No severe adverse events (SAEs) occurred after etanercept dose-increase. In the comparison group, 2 SAEs consisting of hospital admission occurred. Rates of non-severe AEs per subsequent patient year follow-up were 2.27 in the high-dose and 1.43 in the comparison group. Conclusions: Escalation to high-dose etanercept in JIA-patients who were treated to target was generally followed by meaningful clinical improvement. However, similar improvements were observed in a smaller comparison group who did not escalate to high-dose etanercept. No SAEs were seen after escalation to high-dose etanercept. The division into the high-dose and comparison groups was not randomised, which is a potential source of bias. We advocate larger, randomised studies of high versus regular dose etanercept to provide high level evidence on efficacy and safety. Trial registration: Dutch Trial Register; NTR1574; 3 December 2008; https://onderzoekmetmensen.nl/en/trial/26585.</p

Significant pain decrease in children with non-systemic Juvenile Idiopathic Arthritis treated to target:results over 24 months of follow up

Background: The aim of this study was to compare pain-scores in three targeted treatment-strategies in JIA-patients and to identify characteristics predicting persistent pain. Methods: In the BeSt-for-Kids-study 92 DMARD-naïve JIA-patients were randomized in 3 treatment-strategies: 1) initial sequential DMARD-monotherapy 2) initial methotrexate (MTX)/prednisolone-bridging or 3) initial MTX/etanercept. Potential differences in VAS pain scores (0-100 mm) over time between treatment-strategies were compared using linear mixed models with visits clustered within patients. A multivariable model was used to assess the ability of baseline characteristics to predict the chance of high pain-scores during follow-up. Results: Pain-scores over time reduced from mean 55.3 (SD 21.7) to 19.5 (SD 25.3) mm after 24 months. On average, pain-scores decreased significantly with β -1.37 mm (95% CI -1.726; -1.022) per month. No significant difference was found between treatment-strategies (interaction term treatment arm*time (months) β (95% CI) arm 1: 0.13 (-0.36; 0.62) and arm 2: 0.37 (-0.12; 0.86) compared to arm 3). Correction for sex and symptom duration yielded similar results. Several baseline characteristics were predictive for pain over time. Higher VAS pain [β 0.44 (95% CI 0.25; 0.65)] and higher active joint count [0.77 (0.19; 1.34)] were predictive of higher pain over time, whereas, low VAS physician [-0.34 (-0.55; -0.06)], CHQ Physical [-0.42 (-0.72; -0.11)] and Psychosocial summary Score [-0.42 (-0.77; -0.06)] were predictive of lower pain. Conclusions: Treatment-to-target seems effective in pain-reduction in non-systemic JIA-patients irrespective of initial treatment-strategy. Several baseline-predictors for pain over time were found, which could help to identify patients with a high risk for development of chronic pain. Trial registration: Dutch Trial Registry number 1574.</p

Nursing home care for people with dementia and residents' quality of life, quality of care and staff well-being: Design of the Living Arrangements for people with Dementia (LAD) - study

<p>Abstract</p> <p>Background</p> <p>There is limited information available on how characteristics of the organization of nursing home care and especially group living home care and staff ratio contribute to care staff well being, quality of care and residents' quality of life. Furthermore, it is unknown what the consequences of the increasingly small scale organization of care are for the amount of care staff required in 2030 when there will be much more older people with dementia.</p> <p>Methods/Design</p> <p>This manuscript describes the design of the 'Living Arrangements for people with Dementia study' (LAD-study). The aim of this study is to include living arrangements from every part of this spectrum, ranging from large scale nursing homes to small group living homes. The LAD-study exists of quantitative and qualitative research. Primary outcomes of the quantitative study are wellbeing of care staff, quality of care and quality of life of residents. Furthermore, data concerning staff ratio and characteristics of the living arrangements such as group living home care characteristics are assessed. To get more in-depth insight into the barriers and facilitators in living arrangements for people with dementia to provide good care, focus groups and Dementia Care Mapping are carried out.</p> <p>Discussion</p> <p>Results of this study are important for policymakers, directors and staff of living arrangements providing nursing home care to people with dementia and essential for the development of methods to improve quality of care, residents' and staff well-being. Data collection will be repeated every two years, to generate knowledge on the results of changing policies in this field.</p

Predictors of activity involvement in dementia care homes: a cross-sectional study

Despite the finding that involvement in activities is one of the most important needs of residents with dementia living in care homes, care facilities struggle to fulfill this need. Over the years, various factors are suggested which may contribute to or disable activity provision in dementia care homes. These include limited financial resources, task oriented staff and disease-related characteristics of residents. This study aims to further clarify which of these factors predict higher activity involvement.Data were derived from the second measurement (2011) of the Living Arrangements for people with Dementia study. One thousand two hundred eighteen people residing in 139 dementia care homes were involved. Forty predictors of higher involvement were studied. Multilevel backward regression analyses were performed.The most important predictors of higher involvement were: absence of agitation, less ADL dependency, and a higher cognitive status of the residents, higher staff educational level, lower experienced job demands by care staff and a smaller number of residents living in the dementia care wards of a facility. More social supervisor support as perceived by staff was found to predict less activity involvement.To increase the activity involvement of care home residents with dementia it seems vital to: 1) reduce staff's experienced job demands; 2) elevate their overall educational level; 3) train staff to provide suitable activities, taking account of the behavior and preserved capabilities of residents; and 4) foster transition towards small-scale care. In order to achieve these aims, care organizations might need to evaluate the use of their financial means

Activity involvement and quality of life of people at different stages of dementia in long term care facilities

Objectives: Involvement in activities is assumed to positively influence the quality of life of people with dementia, yet activity provision in long-term care remains limited. This study aims to provide more insight into the value of activity involvement for domains of the quality of life of long-term dementia care residents, taking resident characteristics and cognitive status into account.Method: Data were derived from 144 long-term care facilities participating in the second measurement (2010/2011) of the living arrangements for dementia study. Amongst 1144 residents, the relationship between time involved in activities (activity pursuit patterns; RAI-MDS) and quality of life (Qualidem) was studied using multilevel linear regression analyses. Analyses were adjusted for residents age, gender, neuropsychiatric symptoms, ADL dependency and cognition. To check for effect modification of cognition, interactions terms of the variables activity involvement and cognitive status were added to the analyses.Results: Despite resident's cognitive status, their activity involvement was significantly related to better scores on care relationship, positive affect, restless tense behaviour, social relations, and having something to do. A negative relationship existed between the activity involvement and positive self-image. The explained variance in the quality of life between residents caused by the activity involvement was small.Conclusion: Activity involvement seems to be a small yet important contributor to higher well-being in long-term care resident at all stages of dementia. Adjusting activities to individual preferences and capabilities might enlarge this relationship. Further research is needed to confirm this hypothesis, using measurement instruments less sensitive to recall bias and differentiating between the active and passive activity involvement

Additional file 2: of Predictors of activity involvement in dementia care homes: a cross-sectional study

Family caregiver questionnaire. Measures and operationalization of standardized questionnaire for family caregivers in the second measurement cycle of the LAD-study [88, 89]. (DOCX 12 kb