Dementia Registry Research Articles

A nationwide study of the long-term prevalence of dementia and its risk factors in the Swedish intensive care cohort

BackgroundDeveloping dementia is feared by many for its detrimental effects on cognition and independence. Experimental and clinical evidence suggests that sepsis is a risk factor for the later development of dementia. We aimed to investigate whether intensive care-treated sepsis is an independent risk factor for a later diagnosis of dementia in a large cohort of intensive care unit (ICU) patients.MethodsWe identified adult patients admitted to an ICU in 2005 to 2015 and who survived without a dementia diagnosis 1 year after intensive care admission using the Swedish Intensive Care Registry, collecting data from all Swedish general ICUs. Comorbidity, the diagnosis of dementia and mortality, was retrieved from the Swedish National Patient Registry, the Swedish Dementia Registry, and the Cause of Death Registry. Sepsis during intensive care served as a covariate in an extended Cox model together with age, sex, and variables describing comorbidities and acute disease severity.ResultsOne year after ICU admission 210,334 patients were alive and without a diagnosis of dementia; of these, 16,115 (7.7%) had a diagnosis of sepsis during intensive care. The median age of the cohort was 61 years (interquartile range, IQR 43–72). The patients were followed for up to 11 years (median 3.9 years, IQR 1.7–6.6). During the follow-up, 6312 (3%) patients were diagnosed with dementia. Dementia was more common in individuals diagnosed with sepsis during their ICU stay (log-rank p < 0.001), however diagnosis of sepsis during critical care was not an independent risk factor for a later dementia diagnosis in an extended Cox model: hazard ratio (HR) 1.01 (95% confidence interval 0.91–1.11, p = 0.873). Renal replacement therapy and ventilator therapy during the ICU stay were protective. High age was a strong risk factor for later dementia, as was increasing severity of acute illness, although to a lesser extent. However, the severity of comorbidities and the length of ICU and hospital stay were not independent risk factors in the model.ConclusionAlthough dementia is more common among patients treated with sepsis in the ICU, sepsis was not an independent risk factor for later dementia in the Swedish national critical care cohort.Trial registrationThis study was registered a priori with the Australian and New Zeeland Clinical Trials Registry (registration no. ACTRN12618000533291).

Supporting good quality, community-based end-of-life care for people living with dementia: the SEED research programme including feasibility RCT

BackgroundIn the UK, most people with dementia die in the community and they often receive poorer end-of-life care than people with cancer.ObjectiveThe overall aim of this programme was to support professionals to deliver good-quality, community-based care towards, and at, the end of life for people living with dementia and their families.DesignThe Supporting Excellence in End-of-life care in Dementia (SEED) programme comprised six interlinked workstreams. Workstream 1 examined existing guidance and outcome measures using systematic reviews, identified good practice through a national e-survey and explored outcomes of end-of-life care valued by people with dementia and family carers (n = 57) using a Q-sort study. Workstream 2 explored good-quality end-of-life care in dementia from the perspectives of a range of stakeholders using qualitative methods (119 interviews, 12 focus groups and 256 observation hours). Using data from workstreams 1 and 2, workstream 3 used co-design methods with key stakeholders to develop the SEED intervention. Worksteam 4 was a pilot study of the SEED intervention with an embedded process evaluation. Using a cluster design, we assessed the feasibility and acceptability of recruitment and retention, outcome measures and our intervention. Four general practices were recruited in North East England: two were allocated to the intervention and two provided usual care. Patient recruitment was via general practitioner dementia registers. Outcome data were collected at baseline, 4, 8 and 12 months. Workstream 5 involved economic modelling studies that assessed the potential value of the SEED intervention using a contingent valuation survey of the general public (n = 1002). These data informed an economic decision model to explore how the SEED intervention might influence care. Results of the model were presented in terms of the costs and consequences (e.g. hospitalisations) and, using the contingent valuation data, a cost–benefit analysis. Workstream 6 examined commissioning of end-of-life care in dementia through a narrative review of policy and practice literature, combined with indepth interviews with a national sample of service commissioners (n = 20).SettingThe workstream 1 survey and workstream 2 included services throughout England. The workstream 1 Q-sort study and workstream 4 pilot trial took place in North East England. For workstream 4, four general practices were recruited; two received the intervention and two provided usual care.ResultsCurrently, dementia care and end-of-life care are commissioned separately, with commissioners receiving little formal guidance and training. Examples of good practice rely on non-recurrent funding and leadership from an interested clinician. Seven key components are required for good end-of-life care in dementia: timely planning discussions, recognising end of life and providing supportive care, co-ordinating care, effective working with primary care, managing hospitalisation, continuing care after death, and valuing staff and ongoing learning. Using co-design methods and the theory of change, the seven components were operationalised as a primary care-based, dementia nurse specialist intervention, with a care resource kit to help the dementia nurse specialist improve the knowledge of family and professional carers. The SEED intervention proved feasible and acceptable to all stakeholders, and being located in the general practice was considered beneficial. None of the outcome measures was suitable as the primary outcome for a future trial. The contingent valuation showed that the SEED intervention was valued, with a wider package of care valued more than selected features in isolation. The SEED intervention is unlikely to reduce costs, but this may be offset by the value placed on the SEED intervention by the general public.LimitationsThe biggest challenge to the successful delivery and completion of this research programme was translating the ‘theoretical’ complex intervention into practice in an ever-changing policy and service landscape at national and local levels. A major limitation for a future trial is the lack of a valid and relevant primary outcome measure to evaluate the effectiveness of a complex intervention that influences outcomes for both individuals and systems.ConclusionsAlthough the dementia nurse specialist intervention was acceptable, feasible and integrated well with existing care, it is unlikely to reduce costs of care; however, it was highly valued by all stakeholders (professionals, people with dementia and their families) and has the potential to influence outcomes at both an individual and a systems level.Future workThere is no plan to progress to a full randomised controlled trial of the SEED intervention in its current form. In view of new National Institute for Health and Care Excellence dementia guidance, which now recommends a care co-ordinator for all people with dementia, the feasibility of providing the SEED intervention throughout the illness trajectory should be explored. Appropriate outcome measures to evaluate the effectiveness of such a complex intervention are needed urgently.Trial registrationCurrent Controlled Trials ISRCTN21390601.FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research, Vol. 8, No. 8. See the NIHR Journals Library website for further project information.

Aromatherapy for dementia.

Medications licensed for the treatment of dementia have limited efficacy against cognitive impairment or against the distressed behaviours (behavioural and psychological symptoms, or behaviour that challenges) which are also often the most distressing aspect of the disorder for caregivers. Complementary therapies, including aromatherapy, are attractive to patients, practitioners and families, because they are perceived as being unlikely to cause adverse effects. Therefore there is interest in whether aromatherapy might offer a safe means of alleviating distressed behaviours in dementia. To assess the efficacy and safety of aromatherapy for people with dementia. We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group Specialized Register, on 5 May 2020 using the terms: aromatherapy, lemon, lavender, rose, aroma, alternative therapies, complementary therapies, essential oils. In addition, we searched MEDLINE, Embase, PsycINFO (all via Ovid SP), Web of Science Core Collection (via Thompson Web of Science), LILACS (via BIREME), CENTRAL (via the Cochrane Library), ClinicalTrials.gov and the World Health Organization (WHO) trials portal (ICTRP) on 5 May 2020. We included randomised controlled trials which compared fragrance from plants in an intervention defined as aromatherapy for people with dementia with placebo aromatherapy or with treatment as usual. All doses, frequencies and fragrances of aromatherapy were considered. Participants in the included studies had a diagnosis of dementia of any subtype and severity. Two reviewers independently selected studies for inclusion, extracted data and assessed risk of bias in included studies, involving other authors to reach consensus decisions where necessary. We did not perform any meta-analyses because of heterogeneity between studies, but presented a narrative synthesis of results from the included trials. Because of the heterogeneity of analysis methods and inadequate or absent reporting of data from some trials, we used statistical significance (P ≤ or > 0.5) as a summary metric when synthesising results across studies. As far as possible, we used GRADE methods to assess our confidence in the results of the trials, downgrading for risk of bias and imprecision. We included 13 studies with 708 participants. All participants had dementia and in the 12 trials which described the setting, all were resident in institutional care facilities. Nine trials recruited participants because they had significant agitation or other behavioural and psychological symptoms in dementia (BPSD) at baseline. The fragrances used were lavender (eight studies); lemon balm (four studies); lavender and lemon balm, lavender and orange, and cedar extracts (one study each). For six trials, assessment of risk of bias and extraction of results was hampered by poor reporting. Four of the other seven trials were at low risk of bias in all domains, but all were small (range 18 to 186 participants; median 66), reducing our confidence in the results. Our primary outcomes were agitation, overall behavioural and psychological symptoms, and adverse effects. Ten trials assessed agitation using various scales. Among the five trials for which our confidence in the results was moderate or low, four trials reported no significant effect on agitation and one trial reported a significant benefit of aromatherapy. The other five trials either reported no useable data or our confidence in the results was very low. Eight trials assessed overall BPSD using the Neuropsychiatric Inventory and we had moderate or low confidence in the results of five of them. Of these, four reported significant benefit from aromatherapy and one reported no significant effect. Adverse events were poorly reported or not reported at all in most trials. No more than two trials assessed each of our secondary outcomes of quality of life, mood, sleep, activities of daily living, caregiver burden. We did not find evidence of benefit on these outcomes. Three trials assessed cognition: one did not report any data and the other two trials reported no significant effect of aromatherapy on cognition. Our confidence in the results of these studies was low. We have not found any convincing evidence that aromatherapy (or exposure to fragrant plant oils) is beneficial for people with dementia although there are many limitations to the data. Conduct or reporting problems in half of the included studies meant that they could not contribute to the conclusions. Results from the other studies were inconsistent. Harms were very poorly reported in the included studies. In order for clear conclusions to be drawn, better design and reporting and consistency of outcome measurement in future trials would be needed.

Xerogenic Medications as a Predictor for Dental Health Intervention in People with Dementia.

Older adults with dementia often have poor oral health. Chronic use of xerogenic medications may contribute to adverse dental outcomes. To investigate the impact of xerogenic medication classes on the predicted risk for dental interventions in people with dementia. This was a population-based cohort study involving 30,955 individuals registered in the Swedish Dementia Registry (SveDem) from 2008 to 2015. Data were linked with other national registers. The exposure was xerogenic medication classes used in the three years prior to dementia diagnosis (baseline). The primary outcome was the composite of number of tooth extractions and dental restorations over the three-year follow-up period. Secondary outcomes included the number of tooth extractions and number of dental restorations. Poisson regression models were used to estimate the association between the exposure and outcomes. Analyses were adjusted for age, gender, Mini-Mental State Examination, living arrangement, dementia disorder, average number of medications, Charlson's comorbidity index, number of dental visits, and number of teeth. After adjusting for potential covariates, the use of urological drugs (incidence rate ratio [IRR] 1.16, 95% CI 1.04-1.28), proton pump inhibitors (IRR 1.13, 95% CI 1.04-1.23), and opioids (IRR 1.19, 95% CI 1.06-1.34) were significantly associated with the primary composite outcome. The use of specific classes of xerogenic medications was associated with an increased risk for tooth extractions and restorations in people with dementia. The risks and benefits of xerogenic medications, in the context of oral health, should be carefully assessed in this vulnerable population.

How Can Quality of Dementia Care Be Measured? The Development of Clinical Quality Indicators for an Australian Pilot Dementia Registry.

A clinical quality registry (CQR) for dementia provides benefits to those living with dementia and their carers by improving the quality and experience of care through benchmarking and monitoring patient outcomes. CQRs use data collected to form clinical quality indicators (CQIs) through which variations in clinical processes and outcomes between different services and jurisdictions can be highlighted. This modified Delphi study aimed to develop CQIs for a pilot Australian CQR for dementia and mild cognitive impairment. These CQIs are based on evidence, patient and caregiver experience, and clinician perspectives across the trajectory of care from diagnosis to end-of-life. An initial list of indicators from existing dementia registries, academic literature, and clinical practice guidelines was synthesized. A working group of clinicians and registry experts further refined these indicators. A panel of experts comprised of a consumer, a carer, clinicians, consumer organization representatives, and academics. The experts participated in three phases of the modified Delphi study: 1) online survey for scoring importance and validity, 2) a one-day face-to-face discussion, and 3) final survey round to assess importance, validity, and feasibility. The panel assessed 33 CQIs and confirmed a final set of 18 indicators. The CQIs mapped to the domains of quality of diagnosis, quality of management, access to services and supports, and potentially preventable complications. These CQIs will be tested initially in memory clinics and inform the data collection processes for the Australia Dementia Network Registry (ADNet). A dementia CQR is fundamental to ongoing monitoring and development of good quality and consistent care across Australia.

Quantifying and Describing the Natural History and Costs of Alzheimer's Disease and Effects of Hypothetical Interventions.

Background:A long-term horizon is necessary when the socioeconomic consequences and the potential effects of interventions in Alzheimer’s disease (AD) are estimated.Objectives:To illustrate the potential societal costs of AD across the disease continuum and to illustrate the potential cost-effectiveness of a hypothetical intervention with disease modifying treatment (DMT).Methods:Based on the Swedish dementia registry, a Markov model was used to simulate a virtual cohort of 100,000 people with mild cognitive impairment (MCI) due to AD (AD-MCI) in Sweden for 40 years starting at the age of 60. A simulated hypothetical intervention assumed a 25% reduction in progression rate during AD-MCI and mild AD-dementia. A comprehensive set of sensitivity analyses was included.Results:The cumulative risk to develop dementia was 96%. The mean simulated survival was 19.0 years. The net present value for a person year with dementia was 252,843 SEK (about 29,500 US$). The cost effectiveness model illustrated how the hypothetical scenario of a 25% reduction in progression to AD-dementia would require 41 AD-MCI patients to be treated to prevent one case of AD-dementia (2,447 avoided AD-dementia cases of 100,000 with AD-MCI). Most scenarios illustrated hypothetical cost effectiveness (based on a willingness to pay level of 600,000 SEK (70,000 US$) per gained QALY), but not cost savings.Discussion:Lifetime societal costs of AD are substantial. A future DMT may be potentially cost-effective given assumed treatment effects and costs, but cost savings are unlikely.

Patient-Reported Outcome Measures to Inform Care of People With Dementia-A Systematic Scoping Review.

Patient-reported outcome measures (PROMs) captures the patient's perspective regarding quality of life, daily functioning, symptom severity, and overall health, and how these may be impacted by health care or other interventions. PROMs are used in clinical quality registries (CQRs) for a number of diseases to assess the patient's perspective of the impact of clinical care on quality-of-life. This scoping review aimed to identify dementia-specific PROMs, determine how the PROMs are being used, and whether they are used within dementia registries. Three electronic databases were searched using Medical Subject Heading terms for dementia, quality of life, and patient-reported outcomes. Data were extracted on the PROMs used and the methods and mode of administering the PROM. Seven dementia-specific PROMs were identified, however none were used in a dementia registry. All the PROMs were used at the patient level to identify patient needs and health service impacts. Three PROMs were also used at a system level to examine difference in care models. The majority of the PROMs were administered via a researcher or clinician and were predominantly completed by a proxy. PROMs provide an opportunity for a patient with dementia to share experiences and perspectives of care. A number of dementia-specific PROMs exist, yet none are used in dementia registries and the majority of studies utilize PROMs via a proxy. The use of PROM for patients with dementia, particularly in the context of dementia registries, requires further exploration and consideration.

Mortality and stroke risk in patients with dementia treated with renin-angiotensin system (RAS) blocking drugs. A longitudinal nationwide cohort study from the Swedish Dementia Registry (1287)

Mortality and stroke risk in patients with dementia treated with renin-angiotensin system (RAS) blocking drugs. A longitudinal nationwide cohort study from the Swedish Dementia Registry (1287)

Multi-domain interventions for the prevention of dementia and cognitive decline

BACKGROUND Dementia is a worldwide concern. Its global prevalence is increasing. Currently, no effective medical treatment exists to cure or to delay the onset of cognitive decline or dementia. Up to 40% of dementia is attributable to potentially modifiable risk factors, which has led to the notion that targeting these risk factors might reduce the incidence of cognitive decline and dementia. Since sporadic dementia is a multifactorial condition, thought to derive from multiple causes and risk factors, multi-domain interventions may be more effective for the prevention of dementia than those targeting single risk factors. OBJECTIVES To assess the effects of multi-domain interventions for the prevention of cognitive decline and dementia in older adults, including both unselected populations and populations at increased risk of cognitive decline and dementia. SEARCH METHODS We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE (Ovid SP), Embase (Ovid SP), PsycINFO (Ovid SP), CINAHL (EBSCOhost), Web of Science Core Collection (ISI Web of Science), LILACS (BIREME), and ClinicalTrials.gov on 28 April 2021. We also reviewed citations of reference lists of included studies, landmark papers, and review papers to identify additional studies and assessed their suitability for inclusion in the review. SELECTION CRITERIA We defined a multi-domain intervention as an intervention with more than one component, pharmacological or non-pharmacological, but not consisting only of two or more drugs with the same therapeutic target. We included randomised controlled trials (RCTs) evaluating the effect of such an intervention on cognitive functioning and/or incident dementia. We accepted as control conditions any sham intervention or usual care, but not single-domain interventions intended to reduce dementia risk. We required studies to have a minimum of 400 participants and an intervention and follow-up duration of at least 12 months. DATA COLLECTION AND ANALYSIS We initially screened search results using a 'crowdsourcing' method in which members of Cochrane's citizen science platform identify RCTs. We screened the identified citations against inclusion criteria by two review authors working independently. At least two review authors also independently extracted data, assessed the risk of bias and applied the GRADE approach to assess the certainty of evidence. We defined high-certainty reviews as trials with a low risk of bias across all domains other than blinding of participants and personnel involved in administering the intervention (because lifestyle interventions are difficult to blind). Critical outcomes were incident dementia, incident mild cognitive impairment (MCI), cognitive decline measured with any validated measure, and mortality. Important outcomes included adverse events (e.g. cardiovascular events), quality of life, and activities of daily living (ADL). Where appropriate, we synthesised data in random-effects meta-analyses. We expressed treatment effects as risk ratios (RRs) and mean differences (MDs) with 95% confidence intervals (CIs). MAIN RESULTS We included nine RCTs (18.452 participants) in this review. Two studies reported incident dementia as an outcome; all nine studies reported a measure for cognitive functioning. Assessment of cognitive functioning was very heterogeneous across studies, ranging from complete neuropsychological assessments to short screening tests such as the mini-mental state examination (MMSE). The duration of the interventions varied from 12 months to 10 years. We compared multi-domain interventions against usual care or a sham intervention. Positive MDs and RRs 6 points (MD 0.07, 95%CI -0.00 to 0.15). AUTHORS' CONCLUSIONS We found no evidence that multi-domain interventions can prevent incident dementia based on two trials. There was a small improvement in cognitive function assessed by a NTB in the group of participants receiving a multi-domain intervention, although this effect was strongest in trials offering cognitive training within the multi-domain intervention, making it difficult to rule out a potential learning effect. Interventions were diverse in terms of their components and intensity.

Controlling for selective dropout in longitudinal dementia data: Application to the SveDem registry.

IntroductionLoss to follow‐up in dementia studies is common and related to cognition, which worsens over time. We aimed to (1) describe dropout and missing cognitive data in the Swedish dementia registry, SveDem; (2) identify factors associated with dropout; and (3) estimate propensity scores and use them to adjust for dropout.MethodsLongitudinal cognitive data were obtained from 53,880 persons from the SveDem national quality dementia registry. Inverse probability of censoring weights (IPCWs) were estimated using a logistic regression model on dropout.ResultsThe mean annualized rate of change in Mini‐Mental State Examination (MMSE) in those with a low MMSE (0 to 10) was likely underestimated in the complete case analysis (+1.5 points/year) versus the IPCW analysis (−0.3 points/year).DiscussionHandling dropout by IPCWs resulted in plausible estimates of cognitive decline. This method is likely of value to adjust for biased dropout in longitudinal cohorts of dementia.

Atrial Fibrillation in Older Patients with Syncope and Dementia: Insights from the Syncope and Dementia Registry

ObjectivesTo evaluate the clinical characteristics and the long-term outcome of atrial fibrillation (AF) patients with dementia and history of syncope or falls. DesignObservational: analysis of a prospective registry. Setting and ParticipantsBetween 2012 and 2016, the Syncope and Dementia Registry enrolled patients in 12 geriatric departments. Follow-up evaluation was at 12 months. MeasuresClinical, functional, and cognitive assessment. ResultsOf the 522 patients (women, 62.1%; Mini-Mental State Examination 17 ± 6), 26.4% have or presented an AF history. Patients with AF were older (85 ± 6 vs 83 ± 6 years, P = .012), with higher heart rate (78 ± 17 vs. 73 ± 14 bpm, P < .001), prescribed drugs (6.9 ± 2.9 vs 5.9 ± 2.7, P < .001), and an increased number (3.9 ± 2.0 vs 3.0 ± 1.8, P < .001) and severity of comorbidities. Oral anticoagulant therapy was underprescribed (39.9%). Cardiac syncope was more frequently diagnosed (18.8 vs 4.9%, P < .001). At multivariate analysis, AF patients were characterized by advanced age, a higher severity of comorbidities, a greater number of prescribed drugs, an increased heart rate, and a more frequent presence of cardiac symptoms. One-year mortality differed little between patients with and without AF (27.7 vs 22.1%, P = .229). In the arrhythmia group, multivariate predictors of prognosis were disability (number of lost BADLs; P = .020) and a higher heart rate (P = .006). Conclusions and ImplicationsAF and postural stability-related issues often co-exist in persons with dementia. This complex of conditions is associated with an intricate clinical picture, underprescription of oral anticoagulants, and high long-term mortality. Future studies are needed to evaluate the effects of therapy optimization in this population.

Structural magnetic resonance imaging for the early diagnosis of dementia due to Alzheimer's disease in people with mild cognitive impairment.

Structural magnetic resonance imaging for the early diagnosis of dementia due to Alzheimer's disease in people with mild cognitive impairment.

Cognitive training interventions for dementia and mild cognitive impairment in Parkinson's disease.

Approximately 60% to 80% of people with Parkinson's disease (PD) experience cognitive impairment that impacts on their quality of life. Cognitive decline is a core feature of the disease and can often present before the onset of motor symptoms. Cognitive training may be a useful non-pharmacological intervention that could help to maintain or improve cognition and quality of life for people with PD dementia (PDD) or PD-related mild cognitive impairment (PD-MCI). To determine whether cognitive training (targeting single or multiple domains) improves cognition in people with PDD and PD-MCI or other clearly defined forms of cognitive impairment in people with PD. We searched the Cochrane Dementia and Cognitive Improvement Group Trials Register (8 August 2019), the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, CINAHL, and PsycINFO. We searched reference lists and trial registers, searched relevant reviews in the area and conference proceedings. We also contacted experts for clarifications on data and ongoing trials. We included randomised controlled trials where the participants had PDD or PD-MCI, and where the intervention was intended to train general or specific areas of cognitive function, targeting either a single domain or multiple domains of cognition, and was compared to a control condition. Multicomponent interventions that also included motor or other elements were considered eligible. Two review authors independently screened titles, abstracts, and full-text articles for inclusion in the review. Two review authors also independently undertook extraction of data and assessment of methodological quality. We used GRADE methods to assess the overall quality of the evidence. Seven studies with a total of 225 participants met the inclusion criteria for this review. All seven studies compared the effects of a cognitive training intervention to a control intervention at the end of treatment periods lasting four to eight weeks. Six studies included people with PD living in the community. These six studies recruited people with single-domain (executive) or multiple-domain mild cognitive impairment in PD. Four of these studies identified participants with MCI using established diagnostic criteria, and two included both people with PD-MCI and people with PD who were not cognitively impaired. One study recruited people with a diagnosis of PD dementia who were living in long-term care settings. The cognitive training intervention in three studies targeted a single cognitive domain, whilst in four studies multiple domains of cognitive function were targeted. The comparison groups either received no intervention or took part in recreational activities (sports, music, arts), speech or language exercises, computerised motor therapy, or motor rehabilitation combined with recreational activity. We found no clear evidence that cognitive training improved global cognition. Although cognitive training was associated with higher scores on global cognition at the end of treatment, the result was imprecise and not statistically significant (6 trials, 178 participants, standardised mean difference (SMD) 0.28, 95% confidence interval (CI) -0.03 to 0.59; low-certainty evidence). There was no evidence of a difference at the end of treatment between cognitive training and control interventions on executive function (5 trials, 112 participants; SMD 0.10, 95% CI -0.28 to 0.48; low-certainty evidence) or visual processing (3 trials, 64 participants; SMD 0.30, 95% CI -0.21 to 0.81; low-certainty evidence). The evidence favoured the cognitive training group on attention (5 trials, 160 participants; SMD 0.36, 95% CI 0.03 to 0.68; low-certainty evidence) and verbal memory (5 trials, 160 participants; SMD 0.37, 95% CI 0.04 to 0.69; low-certainty evidence), but these effects were less certain in sensitivity analyses that excluded a study in which only a minority of the sample were cognitively impaired. There was no evidence of differences between treatment and control groups in activities of daily living (3 trials, 67 participants; SMD 0.03, 95% CI -0.47 to 0.53; low-certainty evidence) or quality of life (5 trials, 147 participants; SMD -0.01, 95% CI -0.35 to 0.33; low-certainty evidence). There was very little information on adverse events. We considered the certainty of the evidence for all outcomes to be low due to risk of bias in the included studies and imprecision of the results. We identified six ongoing trials recruiting participants with PD-MCI, but no ongoing trials of cognitive training for people with PDD. This review found no evidence that people with PD-MCI or PDD who receive cognitive training for four to eight weeks experience any important cognitive improvements at the end of training. However, this conclusion was based on a small number of studies with few participants, limitations of study design and execution, and imprecise results. There is a need for more robust, adequately powered studies of cognitive training before conclusions can be drawn about the effectiveness of cognitive training for people with PDD and PD-MCI. Studies should use formal criteria to diagnose cognitive impairments, and there is a particular need for more studies testing the efficacy of cognitive training in people with PDD.

Enhanced rehabilitation and care models for adults with dementia following hip fracture surgery.

Hip fracture is a major injury that causes significant problems for affected individuals and their family and carers. Over 40% of people with hip fracture have dementia or cognitive impairment. The outcomes of these individuals after surgery are poorer than for those without dementia. It is unclear which care and rehabilitation interventions achieve the best outcomes for these people. This is an update of a Cochrane Review first published in 2013. (a) To assess the effectiveness of models of care including enhanced rehabilitation strategies designed specifically for people with dementia following hip fracture surgery compared to usual care. (b) To assess for people with dementia the effectiveness of models of care including enhanced rehabilitation strategies that are designed for all older people, regardless of cognitive status, following hip fracture surgery, compared to usual care. We searched ALOIS (www.medicine.ox.ac.uk/alois), the Cochrane Dementia and Cognitive Improvement Group Specialised Register, MEDLINE (OvidSP), Embase (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCOhost), Web of Science Core Collection (ISI Web of Science), LILACS (BIREME), ClinicalTrials.gov, and the World Health Organization International Clinical Trials Registry Platform on 16 October 2019. We included randomised and quasi-randomised controlled trials evaluating the effectiveness of any model of enhanced care and rehabilitation for people with dementia after hip fracture surgery compared to usual care. Two review authors independently selected trials for inclusion and extracted data. We assessed risk of bias of the included trials. We synthesised data only if we considered the trials to be sufficiently homogeneous in terms of participants, interventions, and outcomes. We used the GRADE approach to rate the overall certainty of evidence for each outcome. We included seven trials with a total of 555 participants. Three trials compared models of enhanced care in the inpatient setting with conventional care. Two trials compared an enhanced care model provided in inpatient settings and at home after discharge with conventional care. Two trials compared geriatrician-led care in-hospital to conventional care led by the orthopaedic team. None of the interventions were designed specifically for people with dementia, therefore the data included in the review were from subgroups of people with dementia or cognitive impairment participating in randomised controlled trials investigating models of care for all older people following hip fracture. The end of follow-up in the trials ranged from the point of acute hospital discharge to 24 months after discharge. We considered all trials to be at high risk of bias in more than one domain. As subgroups of larger trials, the analyses lacked power to detect differences between the intervention groups. Furthermore, there were some important differences in baseline characteristics of participants between the experimental and control groups. Using the GRADE approach, we downgraded the certainty of the evidence for all outcomes to low or very low. The effect estimates for almost all comparisons were very imprecise, and the overall certainty for most results was very low. There were no data from any study for our primary outcome of health-related quality of life. There was only very low certainty for our other primary outcome, activities of daily living and functional performance, therefore we were unable to draw any conclusions with confidence. There was low-certainty that enhanced care and rehabilitation in-hospital may reduce rates of postoperative delirium (odds ratio 0.04, 95% confidence interval (CI) 0.01 to 0.22, 2 trials, n = 141) and very low-certainty associating it with lower rates of some other complications. There was also low-certainty that, compared to orthopaedic-led management, geriatrician-led management may lead to shorter hospital stays (mean difference 4.00 days, 95% CI 3.61 to 4.39, 1 trial, n = 162). We found limited evidence that some of the models of enhanced rehabilitation and care used in the included trials may show benefits over usual care for preventing delirium and reducing length of stay for people with dementia who have been treated for hip fracture. However, the certainty of these results is low. Data were available from only a small number of trials, and the certainty for all other results is very low. Determining the optimal strategies to improve outcomes for this growing population of patients should be a research priority.

Secondary Stroke Prevention After Ischemic Stroke in Patients with Alzheimer’s Disease and Other Dementia Disorders

Background:Recurrent ischemic stroke (IS) increases the risk of cognitive decline. To lower the risk of recurrent IS, secondary prevention is essential.Objective:Our aim was to compare post-discharge secondary IS prevention and its maintenance up to 3 years after first IS in patients with and without Alzheimer’s disease and other dementia disorders.Methods:Prospective open-cohort study 2007–2014 from the Swedish national dementia registry (SveDem) and the Swedish national stroke registry (Riksstroke). Patients with dementia who experienced an IS (n = 1410; 332 [23.5%] with Alzheimer’s disease) were compared with matched non-dementia IS patients (n = 7150). We analyzed antiplatelet, anticoagulant, blood pressure lowering, and statin treatment as planned medication initiation at discharge and actual dispensation of medications at first, second, and third year post-stroke.Results:At discharge, planned initiation of medication was higher in patients with dementia compared to non-dementia patients for antiplatelets (OR with 95% CI for fully adjusted models 1.23 [1.02–1.48]) and lower for blood pressure lowering medication (BPLM; 0.57 [0.49–0.67]), statins (0.57 [0.50–0.66]), and anticoagulants (in patients with atrial fibrillation – AF; 0.41 [0.32–0.53]). When analysis for antiplatelets was stratified according to the presence of AF, ORs for receiving antiplatelets remained significant only in the presence of AF (in the presence of AF 1.56 [1.21–2.01], in patients without AF 0.99 [0.75–1.33]). Similar trends were observed in 1st, 2nd, and 3rd year post-stroke.Conclusions:Dementia was a predictor of lower statin and BPLM use. Patients with dementia and AF were more likely to be prescribed antiplatelets and less likely to receive anticoagulants.

Validity of a computerised population registry of dementia based on clinical databases

IntroductionThe handling of information through digital media allows innovative approaches for identifying cases of dementia through computerised searches within the clinical databases that include systems for coding diagnoses. The aim of this study was to analyse the validity of a dementia registry in Gipuzkoa based on the administrative and clinical databases existing in the Basque Health Service. MethodsThis is a descriptive study based on the evaluation of available data sources. First, through review of medical records, the diagnostic validity was evaluated in two samples of cases identified and not identified as dementia. The sensitivity, specificity and positive and negative predictive value of the diagnosis of dementia were measured. Subsequently, the cases of living dementia in December 31, 2016 were searched in the entire Gipuzkoa population to collect sociodemographic and clinical variables. ResultsThe validation samples included 986 cases and 327 no cases. The calculated sensitivity was 80.2% and the specificity was 99.9%. The negative predictive value was 99.4% and positive value was 95.1%. The cases in Gipuzkoa were 10 551, representing 65% of the cases predicted according to the literature. Antipsychotic medication were taken by a 40% and a 25% of the cases were institutionalised. ConclusionsA registry of dementias based on clinical and administrative databases is valid and feasible. Its main contribution is to show the dimension of dementia in the health system.

Specific Neuropsychiatric Symptoms Are Associated with Faster Progression in Alzheimer's Disease: Results of the Prospective Dementia Registry (PRODEM-Austria).

Neuropsychiatric symptoms (NPS) occur frequently in the course of Alzheimer's disease (AD) and are suspected to be associated with a faster dementia progression. Numerous reports have defined specific subsyndromes, summarized in clusters of items of the Neuropsychiatric Inventory (NPI). This study investigated the influence of specific NPI subsyndromes and clinical patient characteristics on dementia progression. Data of the prospective registry on dementia in Austria (PRODEM) were retrospectively analyzed. Cognitive functioning was determined at baseline and 2 yearly follow-up visits using the Mini-Mental State Examination (MMSE) and the Consortium to Establish a Registry for Alzheimer's dementia neuropsychological test battery (CERAD). To assess NPS, the NPI was used: NPI items were classified in three subsyndromes (psychotic cluster, behavioral cluster, emotional cluster). Out of the 662 included patients (mean age 76.4±8.4 years), 43% completed follow-up visits for two years. Significant correlation between higher scores in all three subsyndromes and worse cognitive performance were found for MMSE score, naming, and verbal fluency. Results of linear mixed model analysis revealed lower age and higher scores in the psychotic cluster as significant predictors of changes in MMSE with time. In this study, we report the influence of psychotic subsyndromes and lower age on faster MMSE decline in early AD. These results emphasize the importance of not only assessing but also differentiating neuropsychiatric symptoms in subsyndromes in the early stages of AD as a possible predictor of disease progression.

Prescreening for European Prevention of Alzheimer Dementia (EPAD) trial-ready cohort: impact of AD risk factors and recruitment settings

BackgroundRecruitment is often a bottleneck in secondary prevention trials in Alzheimer disease (AD). Furthermore, screen-failure rates in these trials are typically high due to relatively low prevalence of AD pathology in individuals without dementia, especially among cognitively unimpaired. Prescreening on AD risk factors may facilitate recruitment, but the efficiency will depend on how these factors link to participation rates and AD pathology. We investigated whether common AD-related factors predict trial-ready cohort participation and amyloid status across different prescreen settings.MethodsWe monitored the prescreening in four cohorts linked to the European Prevention of Alzheimer Dementia (EPAD) Registry (n = 16,877; mean ± SD age = 64 ± 8 years). These included a clinical cohort, a research in-person cohort, a research online cohort, and a population-based cohort. Individuals were asked to participate in the EPAD longitudinal cohort study (EPAD-LCS), which serves as a trial-ready cohort for secondary prevention trials. Amyloid positivity was measured in cerebrospinal fluid as part of the EPAD-LCS assessment. We calculated participation rates and numbers needed to prescreen (NNPS) per participant that was amyloid-positive. We tested if age, sex, education level, APOE status, family history for dementia, memory complaints or memory scores, previously collected in these cohorts, could predict participation and amyloid status.ResultsA total of 2595 participants were contacted for participation in the EPAD-LCS. Participation rates varied by setting between 3 and 59%. The NNPS were 6.9 (clinical cohort), 7.5 (research in-person cohort), 8.4 (research online cohort), and 88.5 (population-based cohort). Participation in the EPAD-LCS (n = 413 (16%)) was associated with lower age (odds ratio (OR) age = 0.97 [0.95–0.99]), high education (OR = 1.64 [1.23–2.17]), male sex (OR = 1.56 [1.19–2.04]), and positive family history of dementia (OR = 1.66 [1.19–2.31]). Among participants in the EPAD-LCS, amyloid positivity (33%) was associated with higher age (OR = 1.06 [1.02–1.10]) and APOE ɛ4 allele carriership (OR = 2.99 [1.81–4.94]). These results were similar across prescreen settings.ConclusionsNumbers needed to prescreen varied greatly between settings. Understanding how common AD risk factors link to study participation and amyloid positivity is informative for recruitment strategy of studies on secondary prevention of AD.

Dementia registries have significant potential to improve dementia research

Dementia registries have significant potential to improve dementia research

Cholinesterase inhibitors in patients with diabetes mellitus and dementia: an open-cohort study of ~23 000 patients from the Swedish Dementia Registry

ObjectiveCholinesterase inhibitors (ChEIs) and memantine are the only approved pharmacological treatments for Alzheimer’s disease (AD). Recent literature suggests reductions in cardiovascular burden and risk of stroke in ChEI users. However,...