This paper addresses the potential applications of multiple informant methodology (MIM) to family research. The MIM is used when data on the same unit of analysis are collected from more than one i...

Inter-rater Agreement Indices for Multiple Informant Methodology

We assessed psychotropic prescribing patterns in the clinical treatment of agitation and aggressive behavior in patients with Alzheimer's disease (AD) treated at specialist outpatient clinics in the Federal District of Brazil. This was a naturalistic, observational, multicenter study of a convenience sample of patients with AD (according to DSM-5) who had behavioral symptoms of aggression and/or agitation at outpatient visits, as assessed by the Neuropsychiatric Inventory (NPI), and required pharmacologic intervention. Participants were recruited in 2018-2019 from 11 AD treatment centers. Sociodemographic and clinical data were collected during routine visits. The sample consisted of 369 older adults with a mean age of 82.3 (SD, 7.7) years. The medications most commonly used in patients with behavioral disorders were antidepressants (79.1%), antipsychotics (70.2%), benzodiazepines (10.6%), and mood stabilizers (9.5%). Quetiapine was the most frequently prescribed antipsychotic medication (48.5%), at a mean dose of 57.4 (SD, 40.7) mg. Citalopram was the most widely used antidepressant medication (32.0%), at a mean daily dose of 24.1 (SD, 8.1) mg. In this sample, two or more pharmacologic agents were frequently used together to control aggression and agitation. Benzodiazepine was not frequently used.

Use of psychotropic agents to treat agitation and aggression in Brazilian patients with Alzheimer's disease: A naturalistic and multicenter study

Aims. In a background of interest in staging models in psychiatry, we tested the validity of a simple staging model of cognitive impairment to predict incident dementia. Method. A large community sample of adults aged ≥55 years (N = 4803) was assessed in the baseline of a longitudinal, four-wave epidemiological enquiry. A two-phase assessment was implemented in each wave, and the instruments used included the Mini-Mental Status Examination (MMSE); the History and Aetiology Schedule and the Geriatric Mental State-AGECAT. For the standardised degree of cognitive impairment Perneczky et al's MMSE criteria were applied. A panel of psychiatrists diagnosed cases of dementia according to DSM-IV criteria, and cases and sub-cases of dementia were excluded for the follow-up waves. Competing risk regression models, adjusted by potential confounders, were used to test the hypothesised association between MMSE levels and dementia risk. Results. Out of the 4057 participants followed up, 607 (14.9%) were classified as ‘normal’ (no cognitive impairment), 2672 (65.8%) as ‘questionable’ cognitive impairment, 732 (18.0%) had ‘mild’ cognitive impairment, 38 (0.9%) had ‘moderate’ cognitive impairment and eight (0.2%) had ‘severe’ impairment. Cognitive impairment was associated with risk of dementia, the risk increasing in parallel with the level of impairment (hazard ratio: 2.72, 4.78 and 8.38 in the ‘questionable’, ‘mild’ and ‘moderate’ level of cognitive impairment, respectively). Conclusions. The documented gradient of increased risk of dementia associated with the severity level of cognitive impairment supports the validity of the simple staging model based on the MMSE assessment.

Staging cognitive impairment and incidence of dementia.

Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries.Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis.Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings.The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well. 

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A qualitative 5-country comparison of the perceived impacts of COVID-19 on people living with dementia and unpaid carers

Background Globally, nearly two-thirds of people with dementia reside in low- and middle-income countries (LMICs), yet research on how to support people with dementia in LMIC settings is sparse, particularly regarding the management of behavioural and psychological symptoms of dementia. Understanding how best to manage these symptoms of dementia with non-specialist approaches in LMICs is critical. One such approach is a non-pharmacological intervention based on the Montessori method. Aims To evaluate the feasibility and acceptability of a culturally adapted, group-based Montessori intervention for care home residents with dementia and their study partners, who were paid care workers in Pakistan. Method This was a two-stage study: a cultural adaptation of the Montessori intervention and a single-arm, open-label, feasibility and acceptability study of 12 participant dyads. Feasibility and tolerability of the intervention and study procedures were determined through the recruitment rate, adherence to the protocol and acceptance of the intervention. Qualitative interviews were undertaken with the study partners. A pre-post exploratory analysis of ratings of behavioural and psychological symptoms of dementia, functional ability and quality of life were also conducted. Results The recruitment and retention rates of people with dementia were acceptable, and the intervention was well tolerated by participant dyads. Findings show a reduction in agitation levels and improvement in mood and interest for the activities. Conclusions Feasibility studies of low-cost, easy-to-deliver and culturally adapted interventions are essential in laying the groundwork for subsequent definitive effectiveness and/or implementation trials for dementia in LMICs, where awareness and resources for dementia are limited.

Montessori intervention for individuals with dementia: feasibility study of a culturally adapted psychosocial intervention in Pakistan (MIRACLE).

Objective The aim of the present study was to characterize the clinical pathways that people with dementia (PwD) in different countries follow to reach specialized dementia care. Methods We recruited 548 consecutive clinical attendees with a standardized diagnosis of dementia, in 19 specialized public centres for dementia care in 15 countries. The WHO "encounter form," a standardized schedule that enables data concerning basic socio-demographic, clinical, and pathways data to be gathered, was completed for each participant. Results The median time from the appearance of the first symptoms to the first contact with specialist dementia care was 56 weeks. The primary point of access to care was the general practitioners (55.8%). Psychiatrists, geriatricians, and neurologists represented the most important second point of access. In about a third of cases, PwD were prescribed psychotropic drugs (mostly antidepressants and tranquillizers). Psychosocial interventions (such as psychological counselling, psychotherapy, and practical advice) were delivered in less than 3% of situations. The analyses of the "pathways diagram" revealed that the path of PwD to receiving care is complex and diverse across countries and that there are important barriers to clinical care. Conclusions The study of pathways followed by PwD to reach specialized care has implications for the subsequent course and the outcome of dementia. Insights into local differences in the clinical presentations and the implementation of currently available dementia care are essential to develop more tailored strategies for these patients, locally, nationally, and internationally.

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Pathways to care for people with dementia: An international multicentre study

BACKGROUND: A reliable and valid global staging scale has been lacking within dementia care. OBJECTIVE: To develop an easy-to-use multi-dimensional clinical staging schedule for dementia. METHODS: The schedule was developed through: i) Two series of focus groups (40 and 48 participants, respectively) in Denmark, France, Germany, Netherlands, Spain, Switzerland, and UK with a multi-disciplinary group of professionals working within dementia care, to assess the need for a dementia-staging tool and to obtain suggestions on its design and characteristics; ii) A pilot-study over three rounds to test inter-rater reliability of the newly developed schedule using written case histories, with five members of the project's steering committee and 27 of their colleagues from Netherlands, France, and Spain as participants; and iii) A field-study to test the schedule's inter-rater reliability in clinical practice in France, Germany, Netherlands, Spain, Italy, Turkey, South Korea, Romania, and Serbia, which included 209 dementia patients and 217 of their caregivers as participants. RESULTS: Focus group participants indicated a clear need for a culture-fair international dementia staging scale and reached consensus on face validity and content validity. Accordingly, the schedule has been composed of seven dimensions including behavioral, cognitive, physical, functional, social, and care aspects. Overall, the schedule showed adequate face validity, content validity, and inter-rater reliability; in the nine field-sites, intraclass correlation coefficients (ICCs; absolute agreement) for individual dimensions ranged between 0.38 and 1.0, with 84.4% of ICCs over 0.7. ICCs for total sum scores ranged between 0.89 and 0.99 in the nine field-sites. CONCLUSION: The IDEAL schedule looks promising as tool for the clinical and social management of people with dementia globally, though further reliability and validity testing is needed.

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Defne Eraslan

Papers

Pathways to care for people with dementia: An international multicentre study

Development of an international schedule for the assessment and staging of care for dementia