BackgroundPain medication may have an impact on the quality of life (QoL) in persons with dementia, but may also influence care dependency and daily functioning. The aim of this study is to... Show moreBackgroundPain medication may have an impact on the quality of life (QoL) in persons with dementia, but may also influence care dependency and daily functioning. The aim of this study is to investigate the effect of regularly scheduled paracetamol on care dependency and daily functioning in persons with advanced dementia with low QoL living in long-term care facilities.MethodsThe Quality of life and Paracetamol In advanced Dementia (Q-PID) study was a (block) randomized double-blind placebo-controlled crossover trial with paracetamol and placebo across seventeen long-term care facilities across 9 care organizations in the western region of the Netherlands. Participants were >= 65 years, had advanced dementia (Global Deterioration Scale 5-7), and low QoL (QUALIDEM-6D score <= 70). Measurements were performed by nursing staff at the start and at the end of each treatment period of six weeks. Repeated linear mixed models were used to compute differences between randomization groups, with adjustment for period and order effects, and psychotropic use.ResultsNinety-five persons (mean age of 83.9 years, 57.4% female) were enrolled in the Q-PID study. The mean Care Dependency Scale total score was 37.8 (Standard Deviation [SD] 12.9) and the mean Katz-15 total score was 11.9 (SD 2.4). Repeated linear mixed models showed no difference in mean differences of care dependency (paracetamol - 1.0 [95% Confidence Interval (CI) -2.4-0.3], placebo + 0.1 [-1.3-1.5]), and daily functioning (paracetamol + 0.2 [95% CI -0.2-0.6], placebo + 0.1 [-0.3-0.4]).ConclusionsCompared to placebo, no effect of scheduled administration of paracetamol was found on care dependency and daily functioning in persons with advanced dementia with low QoL. Future research should focus on which specific items of care dependency need special attention to improve the care for persons with advanced dementia. A multi-domain approach is needed to enhance and/or maintain QoL of persons with advanced dementia.Trial registrationNetherlands Trial Register (NTR6766); http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6766; Trial registration date: 20/10/2017. Show less
With ageing populations, the prevalence of age-related disorders such as dementia is on the rise. As there is currently no curable treatment for dementia, the vascular component of dementia is... Show moreWith ageing populations, the prevalence of age-related disorders such as dementia is on the rise. As there is currently no curable treatment for dementia, the vascular component of dementia is increasingly recognised as a key modifiable cause. This thesis aims to investigate biological pathways between risk factors of cardiometabolic disease and cognitive function, in a population of older adults at increased risk of cardiovascular disease (CVD). We hypothesise that changes in physiological functioning caused by (sub)clinical CVD are possible mediators within the pathway leading to cognitive dysfunction. In the first part of this thesis, we studied electrocardiogram-based intervals and serum cardiac biomarkers (such as troponin) in relation to cognitive function. In the second part of this thesis, we studied the interplay of body mass index and serum leptin, loss of body weight and body weight variability, as well as metabolomics-based health scores in relation to cognitive function. We found that various cardiometabolic risk factors are associated with worse cognitive function. The results of this thesis strongly suggest that subclinical changes in cardiometabolic health may exist before cognitive dysfunction becomes apparent. Treating these cardiometabolic risk factors may be of benefit to future cognitive health. Show less
Tasseron-Dries, P.E.M.; Smaling, H.J.A.; Nakanishi, M.; Achterberg, W.P.; Steen, J.T. van der 2023
Objectives This study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including... Show moreObjectives This study aimed to determine best practices for involving family caregivers in interventions aimed at preventing and reducing responsive behaviour stemming from unmet needs, including pain.Design Scoping review, reported according to the Preferred Reporting Items for Systematic Reviews, Meta-Analyses extension for Scoping Reviews reporting guideline.Data sources PubMed, Embase, Emcare, Web of Science, COCHRANE Library, PsycINFO, Academic Search Premier and Cinahl searched up to 23 July 2023.Eligibility criteria Studies reporting on family involvement in interventions for nursing home residents with dementia were included.Data extraction and synthesis Two researchers independently extracted the data, followed by a content analysis.Results Of the 1486 records screened, 20 studies were included. Family caregivers were involved in interventions aimed at planning care, life review (eg, documentation of life experiences of their relative), and selecting activities for their relative. Family caregivers preferred an active role in developing optimal care for their relative. Drivers of success and barriers to family involvement centred around three themes: (1) communication between all involved; (2) prerequisites (organisational and other conditions) and (3) personal circumstances (family’s coping and skills).Conclusion Best practices for involving family caregivers in interventions aimed at addressing responsive behaviour in residents with dementia concerned those interventions in which family caregivers were given an important role in managing responsive behaviour. This means that, in order to achieve an active role of family caregivers in the whole care process, their needs must be taken into account. Show less
Smaling, H.J.A.; Xu, J.Y.; Nakanishi, M.; Shinan-Altman, S.; Mehr, D.R.; Radbruch, L.; ... ; Steen, J.T. van der 2023
Background Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss... Show moreBackground Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner.Methods Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technologyuse at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction.Discussion In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONTEND acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful. Show less
Persons with dementia may not always be able to set their own goals and expectations. When persons with dementia are no longer able to assess their own Quality of life (QoL), family, friends and... Show morePersons with dementia may not always be able to set their own goals and expectations. When persons with dementia are no longer able to assess their own Quality of life (QoL), family, friends and professional caregivers need to be their voice, as they are most familiar with their values, goals and needs. QoL in persons with advanced dementia is influenced by many factors, such as environment, background and psychological factors such as depression and agitation.The Q-PID study was a 13-week double-blind, randomised, placebo-controlled crossover trial that assessed the effect of paracetamol on QoL, discomfort, pain, neuropsychiatric symptoms, care dependency and daily functioning in 95 persons with moderate to advanced dementia living in long-term care facilities (LTCF).This thesis provides evidence that administration of paracetamol or placebo alone is not effective, i.e., no ‘panacea’, for improving QoL, discomfort, pain, neuropsychiatric symptoms, care dependency and dailyfunctioning in persons with advanced dementia living in LTCF. Personalizing interventions, collaborationbetween different health care workers and family/friends, and combining pharmacological and non-pharmacological interventions are important to maintain the best QoL possible, and we recognize that this will be challenging, but not impossible. Show less
Groot, B.; Hendrikx, A.; Bendien, E.; Woelders, S.; Kock, L. de; Abma, T. 2023
BackgroundAcademics aim to understand the experiences of people living with cognitive and/or language impairment in their search for epistemic justice. Methods that do not rely solely on verbal... Show moreBackgroundAcademics aim to understand the experiences of people living with cognitive and/or language impairment in their search for epistemic justice. Methods that do not rely solely on verbal information (e.g., interviews, focus groups) but also employ an attunement to the non-verbal - such as participant observation and creative methods, are seen as a suitable way to do justice to people's non-verbal interactions. However, in practice, researchers still experience ethical issues in everyday encounters with participants with cognitive and/or language impairment even when trying to address epistemic issues while employing such methods. This article aims to demonstrate 1) the importance of attending to the non-verbal in order to prevent epistemic injustice in research and 2) how a case-study approach and discussing ethical dilemmas with peers may help to unpack some of the ethical tensions that the researchers experience.Aim and methodsThis article focuses on ethical dilemmas the authors encountered during their research projects in the past. Three cases chosen by the authors illustrate these dilemmas. Dilemmas are presented as auto-ethnographical written accounts, which were discussed during ten retrospective dialogical sessions (60–90 min) organized by the research group consisting of six academic researchers.ResultsEthically sound research, in which older people living with cognitive and/or language impairment are engaged, entails much more than following procedures about informed consent, privacy, submitting a proposal to an ethics committee, and using suitable methods and techniques. Ethical issues in these studies relate to everyday situations in which researchers tried to do justice to the knowledge of people who have difficulties expressing themselves verbally, but were challenged by what they have initially experienced as ‘having it wrong,’ ‘not knowing,’ and ‘losing something in translation’ in their practice. Finally, we learned that the interactions the researchers encountered were complex. They had to constantly evaluate the appropriateness of their approach, balance rational and intuitive forms of interaction and interpretation, and consider ways of communicating the research findings.Discussion and conclusionApproximating epistemic justice in research with people with cognitive and/or language impairment requires extra effort in daily research routines. Sharing everyday ethical issues via case stories and reflecting on these issues encourages moral learning and brings new knowledge about the craftsmanship of researchers. Especially the collaborative and dialogical reflection helped the researchers to dig deeper and find words for intangible processes that often remain unaddressed. However, sharing stories about ethical issues requires mutual trust and safety because sharing and reflecting may bring discomfort, messiness, and uncertainty. Show less
Zonneveld, M.H.; Trompet, S.; Jukema, J.W.; Noordam, R. 2023
Prospective cohort studies have implied associations between blood levels of troponin T, troponin I, NT-proBNP, GDF15, dementia, and cognitive function, without providing evidence favoring... Show moreProspective cohort studies have implied associations between blood levels of troponin T, troponin I, NT-proBNP, GDF15, dementia, and cognitive function, without providing evidence favoring possible causality. We aimed to assess the causal associations of these cardiac blood biomarkers with dementia and cognition using two-sample Mendelian randomization (MR). Independent genetic instruments (p < 5e−7) for troponin T and I, N-terminal pro B-type natriuretic peptide (NT-proBNP) and growth-differentiation factor 15 (GDF15) were obtained from previously-performed genome-wide association studies of predominantly European ancestry. Summary statistics for gene-outcome associations in European-ancestry participants, for the two-sample MR analyses, were obtained for general cognitive performance (n = 257,842) and dementia (n = 111,326 clinically diagnosed and “proxy” AD cases, and 677,663 controls). Two-sample MR analyses were performed using inverse variance-weighted (IWV) analyses. Sensitivity analyses to evaluate horizontal pleiotropy included weighted median estimator, MR-Egger, and MR using cis-SNPs only. Using IVW, we did not find evidence for possible causal associations between genetically influenced cardiac biomarkers with cognition and dementia. For example, per standard deviation (SD) higher cardiac blood biomarker, the odds ratio for risk of dementia was 1.06 (95%CI 0.90; 1.21) for troponin T, 0.98 (95%CI 0.72; 1.23) for troponin I, 0.97 (95%CI 0.90; 1.06) for NT-proBNP and 1.07 (95%CI 0.93; 1.21) for GDF15. Sensitivity analyses showed higher GDF15 was significantly associated with higher dementia risk and worse cognitive function. We did not find strong evidence that cardiac biomarkers causally influence dementia risk. Future research should aim at elucidating the biological pathways through which cardiac blood biomarkers associate with dementia. Show less
Objectives: The benefit-risk ratio of many interventions remains unclear in older adults with dementia. Efforts for more representative trial inclusion are made; however, recruiting and... Show moreObjectives: The benefit-risk ratio of many interventions remains unclear in older adults with dementia. Efforts for more representative trial inclusion are made; however, recruiting and particularly gaining informed consent remains complex. For research participation, dementia compels the designation of a legal guardian (LG) to give proxy consent. To advance future trial development, we aimed to provide more insights into the factors that affect the proxy decision-making process in dementia research. Design: A qualitative analysis of semi-structured interviews about proxy decision-making on participation in dementia research. Setting and Participants: LGs of nursing home residents that gave (n = 19) and refrained from giving (n = 18) proxy consent for a clinical trial (the Danton study) in the Netherlands. Methods: Verbatim transcripts were thematically analyzed by using a preliminary deductive framework with room for induction of additional emerging themes, being an overall abductive approach. Based on that theme list, related factors of the decision-making process were grouped into overarching levels and merged into a step-by-step process. Results: When discussing proxy decision-making on the participation of an older adult with dementia in a clinical trial, LGs described interconnected factors on the level of the study and patient. Past experiences and attitudes of the LG influenced the weighing of these study- and patient-related factors, leading to a preliminary decision. Other proxies and treating health care professionals (HCPs) were named as important other stakeholders of the decision-making process. Conclusions and Implications: When giving proxy consent for research participation, LGs weigh study- and patient-related factors, leading to an initial benefit-risk evaluation. This weighing process is influenced by LG-related factors and can be modulated by other proxies or treating HCPs, leading to a definitive decision. Although insights into these underlying mechanisms could facilitate the proxy decision-making process for both LGs and researchers, treating HCPs could act as an independent party. (c) 2023 The Authors. Published by Elsevier Inc. on behalf of AMDA - The Society for Post-Acute and Long-Term Care Medicine. This is an open access article under the CC BY license (http:// creativecommons.org/licenses/by/4.0/). Show less
Visser, L.N.C.; Fruijtier, A.; Kunneman, M.; Schoonenboom, N.; Staekenborg, S.S.; Wind, H.A.; ... ; Filer, W.M. van der 2023
Objective: We investigated motivations of patients and care partners for their memory clinic visit, and whether these are expressed in consultations.Methods: We included data from 115 patients (age... Show moreObjective: We investigated motivations of patients and care partners for their memory clinic visit, and whether these are expressed in consultations.Methods: We included data from 115 patients (age 71 +/- 11, 49% Female) and their care partners (N = 93), who completed questionnaires after their first consultation with a clinician. Audio-recordings of these consultations were available from 105 patients. Motivations for visiting the clinic were content-coded as reported by patients in the questionnaire, and expressed by patients and care partners in consultations.Results: Most patients reported seeking a cause for symptoms (61%) or to confirm/exclude a (dementia) diagnosis (16%), yet 19% reported another motivation: (more) information, care access, or treatment/advice. In the first consultation, about half of patients (52%) and care partners (62%) did not express their motivation(s). When both expressed a motivation, these differed in about half of dyads. A quarter of patients (23%) expressed a different/complementary motivation in the consultation, then reported in the questionnaire.Conclusion: Motivations for visiting a memory clinic can be specific and multifaceted, yet are often not addressed during consultations. Practice implications: We should encourage clinicians, patients, and care partners to talk about motivations for visiting the memory clinic, as a starting point to personalize (diagnostic) care. Show less
The general aim of this thesis was to study the frequency, causes and consequences of pathologic brain aging specifically focusing on sub-clinical and clinical MRI manifestations of vascular (small... Show moreThe general aim of this thesis was to study the frequency, causes and consequences of pathologic brain aging specifically focusing on sub-clinical and clinical MRI manifestations of vascular (small vessel disease) and neurodegenerative (brain atrophy) disease. A second aim was to improve the accuracy of the tools to quantify brain tissue so to better reflect the imaging characteristics of older people. All data presented in this thesis are from the AGES-Reykjavik Study including 5764 elderly men and women. The data is based on cross-sectional and longitudinal assessments of the brain with MRI measures. Show less
Steen, J.T. van der; Leussen, C.A. van; Ballentine, J.; Gribben, L.; Reid, J.; Hasson, F.; ... ; McLaughlin, D. 2023
Much is known about palliative care needs of persons with dementia and their family. Less is known about how to successfully implement models that address those needs. We present specialist models... Show moreMuch is known about palliative care needs of persons with dementia and their family. Less is known about how to successfully implement models that address those needs. We present specialist models in the Netherlands (2017-2018) and Northern Ireland (2016-2017) contrasting its evaluations. From implementation failure in the Netherlands compared with successful implementation in Northern Ireland, we learn that recognizing roles and competencies among all involved is essential in developing effective partnership relationships. All of this is facilitated by referral before the end of life and offering various training programs and in-patient and out-patient services and therapies to show benefits early. Show less
AbstractIntroductionPeople with dementia from migrant and ethnic minority (MEM) groups often receive suboptimal care. Differences in perceptions, values and preferences, and linguistic barriers may... Show moreAbstractIntroductionPeople with dementia from migrant and ethnic minority (MEM) groups often receive suboptimal care. Differences in perceptions, values and preferences, and linguistic barriers may complicate communication between persons with dementia, their families and healthcare professionals. Metaphor analysis can provide unique insight into the lifeworld of people with dementia and their informal caregivers. This study identified the metaphors with which informal caregivers of persons with dementia from diverse cultural-linguistic backgrounds understand and discuss dementia.MethodsWe conducted 7 focus groups (n = 42) and 12 interviews (n = 13) with informal caregivers of persons with dementia living in the Netherlands from six different cultural backgrounds: Dutch, Chinese, Turkish, Moroccan, Surinamese, and Dutch-Antillean. Interviews, in the native tongue of participants, were analyzed for the presence of direct and indirect metaphor.ResultsThe results indicate a conspicuous lack of metaphor to reflect on the nature and experience of having dementia. Two typical conceptual metaphors in health communication (journey/war) are virtually absent in all MEM groups. Furthermore, results suggest a one-sided and negative outlook on dementia, with an emphasis on persons with dementia as ‘childlike’ or ‘crazy’.ConclusionOur results suggest a lack of extensively available sophisticated (metaphorical) language to consider daily life with persons with dementia. There is a clear need to address the stigma and lack of medical knowledge surrounding dementia in these MEM groups and to carry out more cross-linguistic and cross-cultural research to explore which metaphors aid understanding and lead to the empowerment and restoration of self-worth of people with dementia. Show less
Vitamin D is a hormone produced in the skin via a non-enzymatic process involving ultraviolet light.It is well known that the physiology of aging makes older people particularly susceptible to... Show moreVitamin D is a hormone produced in the skin via a non-enzymatic process involving ultraviolet light.It is well known that the physiology of aging makes older people particularly susceptible to vitamin D deficiency and that, if untreated, it can have serious health consequences. This thesis deliberates on the topics of vitamin D supplementation in older people in light of the current guidelines and on the possible additional effects of ultraviolet light beyond vitamin D synthesis on nursing home residents. We present a cross-sectional study in nursing home residents aged 70 years and over designed to evaluate the efficacy of vitamin D supplementation in achieving vitamin D sufficiency. We also discuss the different supplementation strategies for nursing home residents and community dwelling persons aged 70 years and over based on a survey administered to general practitioners and elderly care physicians in the Netherlands.In the second part we concentrate on additional effects of ultraviolet light beyond vitamin D synthesis. We describe our systematic review of literature on the effect of ultraviolet light, when applied to the skin or eyes, on mood, depression and well-being. We present also our randomized controlled trial on the effect of ultraviolet radiation compared with oral vitamin D supplementation on the well-being of nursing home residents with dementia. Further we use the data of the RCT to carry out a post-hoc analysis to compare the effect of vitamin D alone compared with ultraviolet radiation on the blood pressure of old people with dementia. Show less
Introduction: Although increased cholesterol level has been acknowledged as a risk factor for dementia, evidence synthesis based on published data has yielded mixed results. This is especially... Show moreIntroduction: Although increased cholesterol level has been acknowledged as a risk factor for dementia, evidence synthesis based on published data has yielded mixed results. This is especially relevant in older adults where individual studies report non-linear relationships between cholesterol and cognition and, in some cases, find higher cholesterol associated with a lower risk of subsequent cognitive decline or dementia. Prior evidence synthesis based on published results has not allowed us to focus on older adults or to standardize analyses across studies. Given our ageing population, an increased risk of dementia in older adults, and the need for proportionate treatment in this age group, an individual participant data (IPD) meta-analysis is timely. Method: We combined data from 8 studies and over 21,000 participants aged 60 years and over in a 2-stage IPD to examine the relationship between total, high-density, and low-density lipoprotein (HDL and LDL) cholesterol and subsequent incident dementia or cognitive decline, with the latter categorized using a reliable change index method. Results: Meta-analyses found no relationship between total, HDL, or LDL cholesterol (per millimoles per litre increase) and risk of cognitive decline in this older adult group averaging 76 years of age. For total cholesterol and cognitive decline: odds ratio (OR) 0.93 (95% confidence interval [CI] 0.86: 1.01) and for incident dementia: OR 1.01 [95% CI 0.89: 1.13]. This was not altered by rerunning the analyses separately for statin users and non-users or by the presence of an APOE e4 allele. Conclusion: There were no clear consistent relationships between cholesterol and cognitive decline or dementia in this older adult group, nor was there evidence of effect modification by statin use. Further work is needed in younger populations to understand the role of cholesterol across the life-course and to identify any relevant intervention points. This is especially important if modification of cholesterol is to be further evaluated for its potential influence on risk of cognitive decline or dementia. Show less
Background Observational studies have reported an inverse association between ultraviolet (UV) radiation and hypertension. The aim of this study was to assess differences in blood pressure changes... Show moreBackground Observational studies have reported an inverse association between ultraviolet (UV) radiation and hypertension. The aim of this study was to assess differences in blood pressure changes between persons with dementia receiving UV light versus vitamin D (VD) supplementation. Methods Post-hoc analysis of randomized controlled trial data concerning nursing home residents with dementia (N = 61; 41 women, mean age 84.8 years). The participants received half-body UV irradiation, twice weekly over 6 months, at one standard erythema dose (UV group, n = 22) or 5600 international units of cholecalciferol once a week (VD group, n = 39). Short-term effects were evaluated after 1 month and long-term effects after 3 and 6 months. Differences in blood pressure changes were assessed using linear mixed models. Results With the VD group as a reference, the estimated difference in mean change of systolic blood pressure was - 26.0 mmHg [95% confidence interval (CI) -39.9, - 12.1, p = .000] at 1 month, 4.5 mmHg (95% CI -6.8, 15.9, p = 0.432) at 3 months, and 0.1 (95% CI -14.1, 14.3, p = 0.83) at 6 months. The estimated difference in diastolic blood pressure was - 10.0 mmHg (95% CI -19.2, - 0.7, p = 0.035) at 1 month, 3.6 mmHg (95% CI -4.1, 11.2, p = 0.358) at 3 months, and 2.7 (95% CI -6.8, 12.1, p = 0.580) at 6 months. Conclusions UV light had only a short-term effect but not a long-term effect on blood pressure reduction compared to VD use in this sample of normotensive to mild hypertensive nursing home residents with dementia. Future studies will be needed to determine the effect of UV light in different samples of the population and especially in a population with hypertension. Show less
Klapwijk, M.S.; Bolt, S.R.; Boogaard, J.A.N.; Koppel, M. ten; Gijsberts, M.J.H.E.; Leussen, C. van; ... ; Steen, J. van der 2021
Background: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Aim: To assess any changes over time in the evaluation of quality of care and quality... Show moreBackground: Dementia palliative care is increasingly subject of research and practice improvement initiatives. Aim: To assess any changes over time in the evaluation of quality of care and quality of dying with dementia by family caregivers. Design: Combined analysis of eight studies with bereaved family caregivers' evaluations 2005-2019. Setting/participants: Family caregivers of nursing home residents with dementia in the Netherlands (n = 1189) completed the End-of-Life in Dementia Satisfaction With Care (EOLD-SWC; quality of care) and Comfort Assessment in Dying (EOLD-CAD, four subscales; quality of dying) instruments. Changes in scores over time were analysed using mixed models with random effects for season and facility and adjustment for demographics, prospective design and urbanised region. Results: The mean total EOLD-SWC score was 33.40 (SD 5.08) and increased by 0.148 points per year (95% CI, 0.052-0.244; adjusted 0.170 points 95% CI, 0.055-0.258). The mean total EOLD-CAD score was 30.80 (SD 5.76) and, unadjusted, there was a trend of decreasing quality of dying over time of -0.175 points (95% CI, -0.291 to -0.058) per year increment. With adjustment, the trend was not significant (-0.070 EOLD-CAD total score points, 95% CI, -0.205 to 0.065) and only the EOLD-CAD subscale 'Well being' decreased. Conclusion: We identified divergent trends over 14 years of increased quality of care, while quality of dying did not increase and well-being in dying decreased. Further research is needed on what well-being in dying means to family. Quality improvement requires continued efforts to treat symptoms in dying with dementia. Show less
Topic: Visual impairment (VI) and cognitive impairment (CIM) are prevalent age-related conditions that impose substantial burden on the society. Findings on the hypothesized bidirectional... Show moreTopic: Visual impairment (VI) and cognitive impairment (CIM) are prevalent age-related conditions that impose substantial burden on the society. Findings on the hypothesized bidirectional association of VI and CIM remains equivocal. Hence, we conducted a systematic review and meta-analysis to examine this bidirectional relationship.Methods: PubMed, Embase, and Cochrane Central registers were searched systematically for observational studies, published from inception until April 6, 2020, in adults 40 years of age or older reporting objectively measured VI and CIM assessment using clinically validated cognitive screening tests or diagnostic evaluation. Meta-analyses on cross-sectional and longitudinal associations between VI and CIM outcomes (any CIM assessed using screening tests and clinically diagnosed dementia) were examined. Random effect models were used to generate pooled odds ratios (ORs) and 95% confidence intervals (CIs). We also examined study quality, publication bias, and heterogeneity.Results: Forty studies were included (n=47 913 570). Meta-analyses confirmed that persons with VI were more likely to have CIM, with significantly higher odds of: (1) any CIM (cross-sectional: OR, 2.38 [95% CI, 1.84-3.07]; longitudinal: OR, 1.66 [95% CI, 1.46-1.89]) and (2) clinically diagnosed dementia (cross-sectional: OR, 2.43 [95% CI, 1.48-4.01]; longitudinal: OR, 2.09 [95% CI, 1.37-3.21]) compared with persons without VI. Significant heterogeneity was explained partially by differences in age, sex, and follow-up duration. Also, some evidence suggested that individuals with CIM, relative to cognitively intact persons, were more likely to have VI, with most articles (8/9 [89%]) reporting significantly positive associations; however, meta-analyses on this association could not be conducted because of insufficient data.Discussion: Overall, our work suggests that VI is a risk factor of CIM, although further work is needed to confirm the association of CIM as a risk factor for VI. Strategies for early detection and management of both conditions in older peoplemay minimize individual clinical and public health consequences. (C) 2020 by the American Academy of Ophthalmology Show less
As the number of patients suffering from dementia is still growing, most of the patients display behavioral symptoms at some time during the disease and these behavioral symptoms lower the quality... Show moreAs the number of patients suffering from dementia is still growing, most of the patients display behavioral symptoms at some time during the disease and these behavioral symptoms lower the quality of life and increase the burden of caregivers, adequate management of these symptoms is warranted. However, the etiology and management of behavioral symptoms is complex, resulting in (mis)use of pharmacological interventions: a cure which is often worse than the disease. In healthy adults, caffeine is known to influence behavior. Four different studies were conducted to see if caffeine is an easy to adjust cause or a pragmatic intervention for behavioral symptoms in patients with dementia. Based on these studies, we conclude caffeine can influence behavior in persons with dementia, but most likely not in all persons, not in all situations and not all of the time; but it can have an influence. In clinical practice it is advisable to consider caffeine as a possible moderator in the clinical assessment of behavioral symptoms in persons with dementia. Show less
Background: The cholinergic system and M-1 receptor remain an important target for symptomatic treatment of cognitive dysfunction. The selective M-1 receptor partial agonist HTL0018318 is under... Show moreBackground: The cholinergic system and M-1 receptor remain an important target for symptomatic treatment of cognitive dysfunction. The selective M-1 receptor partial agonist HTL0018318 is under development for the symptomatic treatment of Dementia's including Alzheimer's disease (AD) and dementia with Lewy bodies (DLB). We investigated the safety, tolerability, pharmacokinetics and exploratory pharmacodynamics of multiple doses of HTL0018318 in healthy younger adults and elderly subjects.Methods: This randomised, double blind, placebo-controlled study was performed, investigating oral doses of 15-35 mg/day HTL0018318 or placebo in 7 cohorts of healthy younger adult (n = 36; 3 cohorts) and elderly (n = 50; 4 cohorts) subjects. Safety, tolerability and pharmacokinetic measurements were performed. Pharmacodynamics were assessed using a battery of neurocognitive tasks and electrophysiological biomarkers of synaptic and cognitive functions.Results: HTL0018318 was generally well-tolerated in multiple doses up to 35 mg/day and were associated with mild or moderate cholinergic adverse events. There were modest increases in blood pressure and pulse rate when compared to placebo-treated subjects, with tendency for the blood pressure increase to attenuate with repeated dosing. There were no clinically significant observations or changes in blood and urine laboratory measures of safety or abnormalities in the ECGs and 24-h Holter assessments. HTL0018318 plasma exposure was dose-proportional over the range 15-35 mg. Maximum plasma concentrations were achieved after 1-2 h. The apparent terminal half-life of HTL0018318 was 16.1 h (+/- 4.61) in younger adult subjects and 14.3 h (+/- 2.78) in elderly subjects at steady state. HTL0018318 over the 10 days of treatment had significant effects on tests of short-term (working) memory (n-back) and learning (Milner maze) with moderate to large effect sizes.Conclusion: Multiple doses of HTL0018138 showed well-characterised pharmacokinetics and were safe and generally well-tolerated in the dose range studied. Pro-cognitive effects on short-term memory and learning were demonstrated across the dose range. These data provide encouraging data in support of the development of HTL0018138 for cognitive dysfunction in AD and DLB. Show less
Klapwijk, M.S.; Dekker, N.L.; Caljouw, M.A.A.; Achterberg, W.P.; Steen, J.T. van der 2020
BackgroundThe Liverpool care pathway for the dying patient (LCP) is a multidisciplinary tool developed for the dying phase for use in palliative care settings. The literature reports divergent... Show moreBackgroundThe Liverpool care pathway for the dying patient (LCP) is a multidisciplinary tool developed for the dying phase for use in palliative care settings. The literature reports divergent experiences with its application in a nursing home setting related to its implementation and staff competencies. The aim of this study is to understand how the LCP is being used in the context of the nursing home, including for residents with dementia, and experienced from the perspectives of those responsible for medical treatment in nursing homes.MethodsA mixed-methods approach was used, consisting of a survey followed by interviews. A link to a 9-item online survey with closed and open-ended questions was emailed to all physicians and nurse practitioners of 33 care organisations with nursing homes in three regions of the Netherlands (North, West and South). In addition, 10 respondents with particularly positive or negative experiences were selected for semi-structured interviews.ResultsThe survey was completed by 159 physicians and nurse practitioners. The respondents were very positive on the content and less positive on the use of the LCP, although they reported difficulties identifying the right time to start the LCP, especially in case of dementia. Also using the LCP was more complicated after the implementation of the electronic health record. The LCP was judged to be a marker of quality for the assessment of symptoms in the dying phase and communication with relatives.ConclusionAn instrument that prompts regular assessment of a dying person was perceived by those responsible for (medical) care to contribute to good care. As such, the LCP was valued, but there was a clear need to start it earlier than in the last days or hours of life, a need for a shorter version, and for integration of the LCP in the electronic health record. Regular assessments with an instrument that focusses on quality of care and good symptom control can improve palliative care for nursing home residents with and without dementia. Show less