Factors related to establishing a comfort care goal in nursing home patients with dementia : a cohort study among family and professional caregivers

Background: Many people with dementia die in long-term care settings. These patients may benefit from a palliative care goal, focused on comfort. Admission may be a good time to revisit or develop care plans. Objective: To describe care goals in nursing home patients with dementia and factors associated with establishing a comfort care goal. Design: We used generalized estimating equation regression analyses for baseline analyses and multinomial logistic regression analyses for longitudinal analyses. Setting: Prospective data collection in 28 Dutch facilities, mostly nursing homes (2007-2010; Dutch End of Life in Dementia study, DEOLD). Results: Eight weeks after admission (baseline), 56.7% of 326 patients had a comfort care goal. At death, 89.5% had a comfort care goal. Adjusted for illness severity, patients with a baseline comfort care goal were more likely to have a religious affiliation, to be less competent to make decisions, and to have a short survival prediction. Their families were less likely to prefer life-prolongation and more likely to be satisfied with family-physician communication. Compared with patients with a comfort care goal established later during their stay, patients with a baseline comfort care goal also more frequently had a more highly educated family member. Conclusions: Initially, over half of the patients had a care goal focused on comfort, increasing to the large majority of the patients at death. Optimizing patient-family-physician communication upon admission may support the early establishing of a comfort care goal. Patient condition and family views play a role, and physicians should be aware that religious affiliation and education may also affect the (timing of) setting a comfort care goal

Psychometric properties of instruments to measure the quality of end-of-life care and dying for long-term care residents with dementia

Purpose: Quality of care for long-term care (LTC) residents with dementia at the end-of-life is often evaluated using standardized instruments that were not developed for or thoroughly tested in this population. Given the importance of using appropriate instruments to evaluate the quality of care (QOC) and quality of dying (QOD) in LTC, we compared the validity and reliability of ten available instruments commonly used for these purposes. Methods: We performed prospective observations and retrospective interviews and surveys of family (n = 70) and professionals (n = 103) of LTC decedents with dementia in the Netherlands. Results: Instruments within the constructs QOC and QOD were highly correlated, and showed moderate to high correlation with overall assessments of QOC and QOD. Prospective and retrospective ratings using the same instruments differed little. Concordance between family and professional scores was low. Cronbach's alpha was mostly adequate. The EOLD-CAD showed good fit with pre-assumed factor structures. The EOLD-SWC and FPCS appear most valid and reliable for measuring QOC, and the EOLD-CAD and MSSE for measuring QOD. The POS performed worst in this population. Conclusions: Our comparative study of psychometric properties of instruments allows for informed selection of QOC and QOD measures for LTC residents with dementia. © The Author(s) 2011

Music-based therapeutic interventions for people with dementia

BACKGROUND: Dementia is a clinical syndrome with a number of different causes which is characterised by deterioration in cognitive, behavioural, social and emotional functions. Pharmacological interventions are available but have limited effect to treat many of the syndrome's features. Less research has been directed towards non-pharmacological treatments. In this review, we examined the evidence for effects of music-based interventions as a treatment. OBJECTIVES: To assess the effects of music-based therapeutic interventions for people with dementia on emotional well-being including quality of life, mood disturbance or negative affect, behavioural problems, social behaviour, and cognition at the end of therapy and four or more weeks after the end of treatment. SEARCH METHODS: We searched ALOIS, the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group (CDCIG) on 14 April 2010 using the terms: music therapy, music, singing, sing, auditory stimulation. Additional searches were also carried out on 3 July 2015 in the major healthcare databases MEDLINE, Embase, psycINFO, CINAHL and LILACS; and in trial registers and grey literature sources. On 12 April 2016, we searched the major databases for new studies for future evaluation. SELECTION CRITERIA: We included randomized controlled trials of music-based therapeutic interventions (at least five sessions) for people with dementia that measured any of our outcomes of interest. Control groups either received usual care or other activities. DATA COLLECTION AND ANALYSIS: Two reviewers worked independently to screen the retrieved studies against the inclusion criteria and then to extract data and assess methodological quality of the included studies. If necessary, we contacted trial authors to ask for additional data, including relevant subscales, or for other missing information. We pooled data using random-effects models. MAIN RESULTS: We included 17 studies. Sixteen studies with a total of 620 participants contributed data to meta-analyses. Participants in the studies had dementia of varying degrees of severity, but all were resident in institutions. Five studies delivered an individual music intervention; in the others, the intervention was delivered to groups of participants. Most interventions involved both active and receptive musical elements. The methodological quality of the studies varied. All were at high risk of performance bias and some were at high risk of detection or other bias. At the end of treatment, we found low-quality evidence that music-based therapeutic interventions may have little or no effect on emotional well-being and quality of life (standardized mean difference, SMD 0.32, 95% CI -0.08 to 0.71; 6 studies, 181 participants), overall behaviour problems (SMD -0.20, 95% CI -0.56 to 0.17; 6 studies, 209 participants) and cognition (SMD 0.21, 95% CI -0.04 to 0.45; 6 studies, 257 participants). We found moderate-quality evidence that they reduce depressive symptoms (SMD -0.28, 95% CI -0.48 to -0.07; 9 studies, 376 participants), but do not decrease agitation or aggression (SMD -0.08, 95% CI -0.29 to 0.14; 12 studies, 515 participants). The quality of the evidence on anxiety and social behaviour was very low, so effects were very uncertain. The evidence for all long-term outcomes was also of very low quality. AUTHORS' CONCLUSIONS: Providing people with dementia with at least five sessions of a music-based therapeutic intervention probably reduces depressive symptoms but has little or no effect on agitation or aggression. There may also be little or no effect on emotional well-being or quality of life, overall behavioural problems and cognition. We are uncertain about effects on anxiety or social behaviour, and about any long-term effects. Future studies should employ larger sample sizes, and include all important outcomes, in particular 'positive' outcomes such as emotional well-being and social outcomes. Future studies should also examine the duration of effects in relation to the overall duration of treatment and the number of sessions

Music-based therapeutic interventions for people with dementia

Background: Dementia is a clinical syndrome with a number of different causes which is characterised by deterioration in cognitive, behavioural, social and emotional functions. Pharmacological interventions are available but have limited effect to treat many of the syndrome's features. Less research has been directed towards non-pharmacological treatments. In this review, we examined the evidence for effects of music-based interventions as a treatment. Objectives: To assess the effects of music-based therapeutic interventions for people with dementia on emotional well-being including quality of life, mood disturbance or negative affect, behavioural problems, social behaviour, and cognition at the end of therapy and four or more weeks after the end of treatment. Search methods: We searched ALOIS, the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group (CDCIG) on 14 April 2010 using the terms: music therapy, music, singing, sing, auditory stimulation. Additional searches were also carried out on 3 July 2015 in the major healthcare databases MEDLINE, Embase, psycINFO, CINAHL and LILACS; and in trial registers and grey literature sources. On 12 April 2016, we searched the major databases for new studies for future evaluation. Selection criteria: We included randomized controlled trials of music-based therapeutic interventions (at least five sessions) for people with dementia that measured any of our outcomes of interest. Control groups either received usual care or other activities. Data collection and analysis: Two reviewers worked independently to screen the retrieved studies against the inclusion criteria and then to extract data and assess methodological quality of the included studies. If necessary, we contacted trial authors to ask for additional data, including relevant subscales, or for other missing information. We pooled data using random-effects models. Main results: We included 17 studies. Sixteen studies with a total of 620 participants contributed data to meta-analyses. Participants in the studies had dementia of varying degrees of severity, but all were resident in institutions. Five studies delivered an individual music intervention; in the others, the intervention was delivered to groups of participants. Most interventions involved both active and receptive musical elements. The methodological quality of the studies varied. All were at high risk of performance bias and some were at high risk of detection or other bias. At the end of treatment, we found low-quality evidence that music-based therapeutic interventions may have little or no effect on emotional well-being and quality of life (standardized mean difference, SMD 0.32, 95% CI -0.08 to 0.71; 6 studies, 181 participants), overall behaviour problems (SMD -0.20, 95% CI -0.56 to 0.17; 6 studies, 209 participants) and cognition (SMD 0.21, 95% CI -0.04 to 0.45; 6 studies, 257 participants). We found moderate-quality evidence that they reduce depressive symptoms (SMD -0.28, 95% CI -0.48 to -0.07; 9 studies, 376 participants), but do not decrease agitation or aggression (SMD -0.08, 95% CI -0.29 to 0.14; 12 studies, 515 participants). The quality of the evidence on anxiety and social behaviour was very low, so effects were very uncertain. The evidence for all long-term outcomes was also of very low quality. Authors' conclusions: Providing people with dementia with at least five sessions of a music-based therapeutic intervention probably reduces depressive symptoms but has little or no effect on agitation or aggression. There may also be little or no effect on emotional well-being or quality of life, overall behavioural problems and cognition. We are uncertain about effects on anxiety or social behaviour, and about any long-term effects. Future studies should employ larger sample sizes, and include all important outcomes, in particular 'positive' outcomes such as emotional well-being and social outcomes. Future studies should also examine the duration of effects in relation to the overall duration of treatment and the number of sessions

Effects of two feedback interventions on end-of-life outcomes in nursing home residents with dementia: A cluster-randomized controlled three-armed trial

Background: Despite increased attention for palliative care in dementia, recent studies found burdensome symptoms and unmet family caregiver needs in the last phase of life. Feedback is being used to improve the quality of palliative care, but we do not know how effective it is. Aim: To assess the effect of two feedback strategies on perceived quality of end-of-life care and comfort in dying nursing home residents with dementia. Methods: In a cluster-randomized controlled trial, the End-of-Life in Dementia–Satisfaction With Care and the End-of-Life in Dementia–Comfort Assessment in Dying scales were completed by bereaved family caregivers of residents with dementia of 18 Dutch nursing homes. Two feedback strategies, generic feedback with mean End-of-Life in Dementia-scores and feedback with individual (patient-specific) End-of-Life in Dementia-scores, were compared to no feedback provided. The intervention groups discussed End-of-Life in Dementia-ratings in team meetings and formulated actions to improve care. Multi-level analyses assessed effects. Results: A total of 668 families rated the End-of-Life in Dementia–instruments. Compared to no feedback, the generic strategy resulted in lower quality of end-of-life care in unadjusted (B = −1.65, confidence interval = −3.27; −0.21) and adjusted analyses (B = −2.41, confidence interval = −4.07; −0.76), while there was no effect on comfort. The patient-specific strategy did not affect the quality of end-of-life care, but it increased comfort in unadjusted analyses (only, B = 2.20, confidence interval = 0.15; 4.39; adjusted: B = 1.88, confidence interval = −0.34; 4.10). Conclusion: Neither feedback strategy improved end-of-life outcome. Perhaps, skills to translate the feedback into care improvement actions were insufficient. Feedback with favorable family ratings might even have triggered opposite effects. Trial number: NTR3942

Determinants of selective reporting: A taxonomy based on content analysis of a random selection of the literature

BACKGROUND: Selective reporting is wasteful, leads to bias in the published record and harms the credibility of science. Studies on potential determinants of selective reporting currently lack a shared taxonomy and a causal framework. OBJECTIVE: To develop a taxonomy of determinants of selective reporting in science. DESIGN: Inductive qualitative content analysis of a random selection of the pertinent literature including empirical research and theoretical reflections. METHODS: Using search terms for bias and selection combined with terms for reporting and publication, we systematically searched the PubMed, Embase, PsycINFO and Web of Science databases up to January 8, 2015. Of the 918 articles identified, we screened a 25 percent random selection. From eligible articles, we extracted phrases that mentioned putative or possible determinants of selective reporting, which we used to create meaningful categories. We stopped when no new categories emerged in the most recently analyzed articles (saturation). RESULTS: Saturation was reached after analyzing 64 articles. We identified 497 putative determinants, of which 145 (29%) were supported by empirical findings. The determinants represented 12 categories (leaving 3% unspecified): focus on preferred findings (36%), poor or overly flexible research design (22%), high-risk area and its development (8%), dependence upon sponsors (8%), prejudice (7%), lack of resources including time (3%), doubts about reporting being worth the effort (3%), limitations in reporting and editorial practices (3%), academic publication system hurdles (3%), unfavorable geographical and regulatory environment (2%), relationship and collaboration issues (2%), and potential harm (0.4%). CONCLUSIONS: We designed a taxonomy of putative determinants of selective reporting consisting of 12 categories. The taxonomy may help develop theory about causes of selection bias and guide policies to prevent selective reporting