Pre-existing neurological conditions and COVID-19 co-infection: Data from systematic reviews, meta-analyses, and scoping reviews.

BACKGROUND: Pre-existing neurological diseases have been identified as risk factors for severe COVID-19 infection and death. There is a lack of comprehensive literature review assessing the relationship between pre-existing neurological conditions and COVID-19 outcomes. Identification of high risk groups is critical for optimal treatment and care. METHODS: A literature review was conducted for systematic reviews, meta-analyses, and scoping reviews published between January 1, 2020 and January 1, 2023. Literature assessing individuals with pre-existing neurological diseases and COVID-19 infection was included. Information regarding infection severity was extracted, and potential limitations were identified. RESULTS: Thirty-nine articles met inclusion criteria, with data assessing >3 million patients from 51 countries. 26/51 (50.9%) of countries analyzed were classified as high income, while the remaining represented middle-low income countries (25/51; 49.0%). A majority of evidence focused on the impact of cerebrovascular disease (17/39; 43.5%) and dementia (5/39; 12.8%) on COVID-19 severity and mortality. 92.3% of the articles (36/39) suggested a significant association between neurological conditions and increased risk of severe COVID-19 and mortality. Cerebrovascular disease, dementia, Parkinson's disease, and epilepsy were associated with increased COVID severity and mortality. CONCLUSION: Pre-existing neurological diseases including cerebrovascular disease, Alzheimer's disease and other dementias, epilepsy, and Parkinson's disease are significant risk factors for severity of COVID-19 infection and mortality in the acute infectious period. Given that 61.5% (24/39) of the current evidence only includes data from 2020, further updated literature is crucial to identify the relationship between chronic neurological conditions and clinical characteristics of COVID-19 variants.

Assessing cognitive function in longitudinal studies of ageing worldwide: some practical considerations.

Over 55 million people live with dementia worldwide. With 40% of modifiable risk factors estimated to contribute to dementia, the potential for prevention is high, and preventive measures, at an early stage of cognitive decline, are likely to positively influence future dementia trends. Countries need reliable health data and adequate measurement tools to quantify, monitor and track early changes in cognitive capacity in the general population. Many cognitive tests exist; however, there is no consensus to date about which instruments should be employed, and important variations in measurement have been observed. In this narrative review, we present a number of cognitive tests that have been used in nationally representative population-based longitudinal studies of ageing. Longitudinal panel studies of ageing represent critical platforms towards capturing the process of cognitive ageing and understanding associated risk and protective factors. We highlight optimal measures for use at a population level and for cross-country comparisons, taking into consideration instrument reliability, validity, duration, ease of administration, costs, literacy and numeracy requirements, adaptability to sensory and fine motor impairments and portability to different cultural and linguistic milieux. Drawing upon the strengths and limitations of each of these tests, and the experience gained and lessons learnt from conducting a nationally representative study of ageing, we indicate a comprehensive battery of tests for the assessment of cognitive capacity, designed to facilitate its standardised operationalisation worldwide.

A systematic review of the measurement properties of aspects of psychological capacity in older adults.

OBJECTIVE: to examine the measurement properties of instruments that have been used to measure aspects of psychological capacity in adults aged 60 years and over. METHODS: the databases PsycINFO, MEDLINE, EMCARE and Scopus from 2010 were searched using search terms related to psychological capacity, older persons and measurement properties. Both data extraction and risk-of-bias assessment were conducted using the COSMIN (COnsensus-based Standards for the selection of health Measurement INstruments) criteria using Covidence software. RESULTS: the full text of 326 articles were reviewed and a total of 30 studies were included, plus two further articles identified from reference lists (n = 32). No single instrument measuring psychological capacity was identified. Twenty (n = 20) instruments were identified that measure seven constructs of psychological capacity: Resilience; Sense of coherence; Hope; Mindfulness; Optimism; Attachment to life; Emotional regulation. CONCLUSIONS: this systematic review identified potential measures of psychological capacity in older adults. The review will inform further work to develop a single comprehensive measure of psychological capacity in older adults.

The worldwide costs of dementia in 2019.

INTRODUCTION: Dementia is a leading cause of death and disability globally. Estimating total societal costs demonstrates the wide impact of dementia and its main direct and indirect economic components. METHODS: We constructed a global cost model for dementia, presenting costs as cumulated global and regional costs. RESULTS: In 2019, the annual global societal costs of dementia were estimated at US $1313.4 billion for 55.2 million people with dementia, corresponding to US $23,796 per person with dementia. Of the total, US $213.2 billion (16%) were direct medical costs, US $448.7 billion (34%) direct social sector costs (including long-term care), and US $651.4 billion (50%) costs of informal care. DISCUSSION: The huge costs of dementia worldwide place enormous strains on care systems and families alike. Although most people with dementia live in low- and middle-income countries, highest total and per-person costs are seen in high-income countries. HIGHLIGHTS: Global economic costs of dementia were estimated to reach US $1313.4 in 2019. Sixty-one percent of people with dementia live in low-and middle-income countries, whereas 74% of the costs occur in high-income countries. The impact of informal care accounts for about 50% of the global costs. The development of a long-term care infrastructure is a great challenge for low-and middle-income countries. There is a great need for more cost studies, particularly in low- and middle-income countries. Discussions of a framework for global cost comparisons are needed.

A Systematic Review of Quality Dementia Clinical Guidelines for the Development of WHO's Package of Interventions for Rehabilitation.

BACKGROUND AND OBJECTIVES: As part of the WHO Rehabilitation 2030 call for action, the WHO Rehabilitation Programme is developing its Package of Interventions for Rehabilitation (PIR) to support ministries of health around the globe in integrating rehabilitation services into health systems. As a vital step for this PIR development, we conducted a systematic review of clinical practice guidelines (CPGs) for dementia to identify interventions for rehabilitation and related evidence. RESEARCH DESIGN AND METHODS: Following WHO Rehabilitation Programme and Cochrane Rehabilitation's methodology, quality CPGs published in English between January 2010 and March 2020 were identified using PubMed, Embase, CINAHL, PEDro, Google Scholar, guideline databases, and professional society websites. Guideline quality was assessed using the Appraisal of Guidelines for Research and Evaluation (II). RESULTS: Of the 22 CPGs that met the selection criteria, 6 satisfied the quality evaluation. Three hundred and thirty rehabilitation-related recommendations were identified, mostly concentrated in the areas of cognition, emotion, and carer support. There were many strong interventions, with moderate- to high-quality evidence that could be easily introduced in routine practice. However, major limitations were found both in the quality of evidence and scope, especially in areas such as education and vocation, community and social life, and lifestyle modifications. DISCUSSION AND IMPLICATIONS: Further rigorous research is needed to build quality evidence in dementia rehabilitation in general, and especially in neglected areas for rehabilitation. Future work should also focus on the development of CPGs for dementia rehabilitation. A multipronged approach is needed to achieve Universal Health Coverage for dementia rehabilitation.

Brain health as a global priority.

Brain health is an evolving concept that has become increasingly popular within clinical and academic centers, journalism and the general public. It can be defined as the state of brain functioning across cognitive, sensory, social-emotional, behavioural and motor domains, allowing a person to realize their full potential over the life course. Multiple, interconnected determinants play a role in shaping brain health from pre-conception through the end of life. Brain health can be optimized by addressing the following determinants: physical health, healthy environments, safety and security, learning and social connection, and access to quality services. Optimizing brain health improves brain structure and functioning across all domains and benefits health by lowering rates of neurological disorders, mental health conditions, and substance use; improving quality of life for people with lived experience of these conditions; and improving physical health (particularly through improved endocrine and immunological functioning and lower rates of stress-related physical health conditions). Additionally, optimizing brain health can lead to social and economic benefits including increased school retention and academic achievement, lower rates of teenage pregnancies, lower rates of incarceration, lower health care costs and rates of disability, higher productivity, and greater wealth. Optimizing brain health for all is paramount to ensuring human health and well-being globally. It is central to achieving global commitments outlined in the Intersectoral global action plan on epilepsy and other neurological disorders 2022-2031, WHO's Triple Billion targets, the UN SDGs and the 2021 Geneva Charter for Well-being. Efforts to optimize brain health require multi-stakeholder collaborations and must be integrated across all sectors of society: health and social care; education; legislature and governance; finance and economy; employment; infrastructure, urban planning and housing; and ecology, nature and climate. In return, robust investments in actions that optimize brain health across the life course promise to improve multiple health outcomes and lift development and well-being globally. Multisectoral engagement and collaboration are urgently needed in order to move the brain health agenda forward for all people.

Harmonizing neuropsychological assessment for mild neurocognitive disorders in Europe.

INTRODUCTION: Harmonized neuropsychological assessment for neurocognitive disorders, an international priority for valid and reliable diagnostic procedures, has been achieved only in specific countries or research contexts. METHODS: To harmonize the assessment of mild cognitive impairment in Europe, a workshop (Geneva, May 2018) convened stakeholders, methodologists, academic, and non-academic clinicians and experts from European, US, and Australian harmonization initiatives. RESULTS: With formal presentations and thematic working-groups we defined a standard battery consistent with the U.S. Uniform DataSet, version 3, and homogeneous methodology to obtain consistent normative data across tests and languages. Adaptations consist of including two tests specific to typical Alzheimer's disease and behavioral variant frontotemporal dementia. The methodology for harmonized normative data includes consensus definition of cognitively normal controls, classification of confounding factors (age, sex, and education), and calculation of minimum sample sizes. DISCUSSION: This expert consensus allows harmonizing the diagnosis of neurocognitive disorders across European countries and possibly beyond.

Empowering Dementia Carers With an iSupport Virtual Assistant (e-DiVA) in Asia-Pacific Regional Countries: Protocol for a Pilot Multisite Randomized Controlled Trial.

BACKGROUND: Dementia is a global public health priority with an estimated prevalence of 150 million by 2050, nearly two-thirds of whom will live in the Asia-Pacific region. Dementia creates significant care needs for people with the disease, their families, and carers. iSupport is a self-help platform developed by the World Health Organization (WHO) to provide education, skills training, and support to dementia carers. It has been adapted in some contexts (Australia, India, the Netherlands, and Portugal). Carers using the existing adapted versions have identified the need to have a more user-friendly version that enables them to identify solutions for immediate problems quickly in real time. The iSupport virtual assistant (iSupport VA) is being developed to address this gap and will be evaluated in a randomized controlled trial (RCT). OBJECTIVE: This paper reports the protocol of a pilot RCT evaluating the iSupport VA. METHODS: Seven versions of iSupport VA will be evaluated in Australia, Indonesia, New Zealand, and Vietnam in a pilot RCT. Feasibility, acceptability, intention to use, and preliminary impact on carer-perceived stress of the iSupport VA intervention will be assessed. RESULTS: This study was funded by the e-ASIA Joint Research Program in November 2020. From January to July 2023, we will enroll 140 dementia carers (20 carers per iSupport VA version) for the pilot RCT. The study has been approved by the Human Research Committee, University of South Australia, Australia (203455). CONCLUSIONS: This protocol outlines how a technologically enhanced version of the WHO iSupport program-the iSupport VA-will be evaluated. The findings from this intervention study will provide evidence on the feasibility and acceptability of the iSupport VA intervention, which will be the basis for conducting a full RCT to assess the effectiveness of the iSupport VA. The study will be an important reference for countries planning to adapt and enhance the WHO iSupport program using digital health solutions. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12621001452886; https://tinyurl.com/afum5tjz. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/33572.

Disruptions of neurological services, its causes and mitigation strategies during COVID-19: a global review.

BACKGROUND: The COVID-19 pandemic leads to disruptions of health services worldwide. To evaluate the particular impact on neurological services a rapid review was conducted. METHODS: Studies reporting the provision of neurological services during the pandemic and/or adopted mitigation strategies were included in this review. PubMed and World Health Organization's (WHO) COVID-19 database were searched. Data extraction followed categories used by WHO COVID-19 pulse surveys and operational guidelines on maintaining essential health services during COVID-19. FINDINGS: The search yielded 1101 articles, of which 369 fulfilled eligibility criteria, describing data from 210,419 participants, being adults (81%), children (11.4%) or both (7.3%). Included articles reported data from 105 countries and territories covering all WHO regions and World Bank income levels (low income: 1.9%, lower middle: 24.7%, upper middle: 29.5% and high income; 44.8%). Cross-sectoral services for neurological disorders were most frequently disrupted (62.9%), followed by emergency/acute care (47.1%). The degree of disruption was at least moderate for 75% of studies. Travel restrictions due to lockdowns (81.7%) and regulatory closure of services (65.4%) were the most commonly reported causes of disruption. Authors most frequently described telemedicine (82.1%) and novel dispensing approaches for medicines (51.8%) as mitigation strategies. Evidence for the effectiveness of these measures is largely missing. INTERPRETATION: The COVID-19 pandemic affects all aspects of neurological care. Given the worldwide prevalence of neurological disorders and the potential long-term neurological consequences of COVID-19, service disruptions are devastating. Different strategies such as telemedicine might mitigate the negative effects of the pandemic, but their efficacy and acceptability remain to be seen.

Training and support for caregivers of people with dementia: The process of culturally adapting the World Health Organization iSupport programme to Portugal.

BACKGROUND: Informal caregivers of people with dementia often struggle with several stressors, and their mental and physical health can be negatively affected by providing care. iSupport is an online self-help programme designed by the World Health Organization to provide education, skills training, and support to those caregivers. PURPOSE: This paper describes the development of an adapted version of iSupport to the Portuguese culture. We present the adaptation process, methods used and results for the country-specific version. METHODS: The adaptation of iSupport was operationalised in five steps: needs assessment; content translation by an authorised translator and technical accuracy check by health professionals; cultural adaptation; independent appraisal of contents by an expert panel; and fidelity check by programme authors. RESULTS: Findings indicated the adjustments needed in the original iSupport contents. Overall, 323 text excerpts were proposed to adaptation, comprising semantic and conceptual equivalence of expressions, and adjustments to cultural habits, customs, traditions, local resources, and practices. The expert panel identified the need to reformulate definitions, designations, recommendations, and case studies to fine-tune the original contents to local knowledge and practices. Most adaptations were considered to be in line with the core concepts of the original programme. CONCLUSIONS: iSupport is an innovative tool capturing the attention of several organisations around the world interested in translating, adapting, and using the programme. This paper is the first describing the methodological approach for culturally adapting iSupport, constituting an essential resource for those aiming to replicate the process or culturally adapting evidence-based interventions. Tailoring iSupport to the Portuguese context was critical to accommodate the cultural experiences of the target group as well as the knowledge, theoretical approaches, and practices of local professionals. The European-Portuguese version of iSupport introduces the adjustments needed to implement a useful new intervention programme aimed at minimising the psychological distress of Portuguese caregivers.

Online training and support program (iSupport) for informal dementia caregivers: protocol for an intervention study in Portugal.

BACKGROUND: Informal caregivers (IC) of people with dementia (PwD) are at greater risk of developing physical and mental health problems when compared to the general population and to IC of people with other chronic diseases. Internet-based interventions have been explored for their potential to minimize the negative effects of caring, accounting for their ubiquitous nature, convenient delivery, potential scalability and presumed (cost) effectiveness. iSupport is a self-help online program developed by the World Health Organization (WHO) to provide education, skills training and support to IC of PwD. This paper describes the design of an intervention study aimed at determining the effectiveness of a Portuguese culturally adapted version of iSupport on mental health and other well-being outcomes. METHODS: The study follows an experimental parallel between-group design with two arms: access to the five modules and twenty-three lessons of "iSupport" for three months (intervention group); or access to an education-only e-book (comparison group). One hundred and eighty four participants will be recruited by referral from national associations. Inclusion criteria are: being 18 years or older and provide e-consent; being a self-reported non-paid caregiver for at least six months; of a person with a formal diagnosis of dementia; being skilled to use internet; and experience a clinically relevant level of burden (≥ 21 on Zarit Burden Interview) or depression or anxiety symptoms (≥ 8 on Hospital Anxiety and Depression Scale). Data is collected online, resorting to self-administered instruments, at baseline, 3 and 6 months after baseline. The primary outcome is caregiver burden, measured by the Zarit Burden Interview. Symptoms of depression and anxiety, quality of life, positive aspects of caregiving and general self-efficacy are secondary study outcomes. The data analysis will follow an Intention-to-treat (ITT) protocol. DISCUSSION: This protocol is an important resource for the many organizations in several countries aiming to replicate iSupport. Findings from this intervention study will offer evidence to bolster an informed decision making on scaling up iSupport as a new intervention program with minimal costs aimed at minimizing the psychological distress of IC of PwD in Portugal and elsewhere. TRIAL REGISTRATION: ClinicalTrials.gov, NCT04104568. Registered 26 September 2019.

Dementia and caregiver burden: A three-year longitudinal study.

OBJECTIVES: Dementia, with its progressive cognitive and functional decline and associated neuropsychiatric symptoms, places a large burden on caregivers. While frequently studied, longitudinal findings about the overall trajectory of burden are mixed. The study sought to characterize caregiver burden over a 3-year period and identify predictors of this burden. METHODS: Seven-hundred-and-eighty-one patients with dementia were recruited from nine memory clinics around Australia. Measures of caregiver burden, cognition, function, and neuropsychiatric symptoms were completed with patients and their caregivers at regular intervals over a 3-year period. Patients' level of services and medication use were also recorded. RESULTS: Of the 720 patients with measures of caregiver burden at baseline, 47.4% of caregivers had clinically significant levels of burden. This proportion increased over time, with 56.8% affected at 3 years. Overall levels of burden increased for caregivers of patients without services, though did not change for caregivers of patients receiving services or residential care after controlling for other variables. Patient characteristics-including greater neuropsychiatric symptoms, lower functional ability, fewer medications, lack of driving ability-and female sex of caregivers were associated with greater burden. CONCLUSIONS: High levels of caregiver burden are present in a large proportion of caregivers of people with dementia and this increases over time for those without services. Clinical characteristics of patients (including neuropsychiatric symptoms, function, overall health, driving status), level of services, and caregiver sex appear to be the best predictors of this burden. These characteristics may help identify caregivers at greater risk of burden to target for intervention.

Mild Cognitive Impairment and Caregiver Burden: A 3-Year-Longitudinal Study.

OBJECTIVES: Mild cognitive impairment (MCI) is common, affecting 10%-35% of people over 65, and poses unique challenges for patients and their caregivers. Comparatively little research has examined caregiver burden in this population, with longitudinal research, in particular, lacking. We examined caregiver burden in a sample of people with MCI over 3 years. DESIGN: Three-year observational study. SETTING: Nine memory clinics in Australia. PARTICIPANTS: One-hundred-and-eighty-five people with MCI and their caregivers. MEASUREMENTS: Measures of caregiver burden, cognition, function, neuropsychiatric symptoms, driving status, and medication use were completed with patients and their caregivers at regular intervals over a 3-year period. RESULTS: Between 21.1% and 29.5% of caregivers reported a clinically significant level of burden over the study. Patients' higher levels of neuropsychiatric symptoms, lower functional ability, and lack of driving ability, and caregivers' employment were associated with greater caregiver burden over time. Caregiver burden did not increase over time when controlling for patient and caregiver characteristics. CONCLUSIONS: High levels of caregiver burden are present in a significant proportion of caregivers of people with MCI. Clinical characteristics of patients - including severity of neuropsychiatric symptoms and functional impairment - and the employment status of caregivers predict burden. Such characteristics may help identify caregivers at greater risk of burden to target for intervention.

Validity and reliability of the Persian version of general practitioner assessment of cognition (P-GPCOG).

Objectives: The study aimed to examine the validity, reliability, and practicality of the Persian version of the General Practitioner Assessment of Cognition (P-GPCOG) as a brief, efficient cognitive assessment instrument in Iranian older adults. Method: The sample comprised 151 community-dwelling older adults and 79 nursing home residents (aged ≥60 years). The English GPCOG was translated, back-translated, and revised to prepare the final P-GPCOG. The Abbreviated Mental Test score (AMTs) and the Depression in Old Age Scale (DIA-S) were administered to the two different samples to establish the convergent and discriminant validity of the P-GPCOG. Results: The mean age of the sample was 70.67 (SD = 9.51); 57.4% were male. The mean P-GPCOG scores for the total, cognitive and informant subscales were 7.67 (SD = 4.59), 4.18 (SD = 2.73), and 3.49 (SD = 2.24), respectively. Cognitive (P < 0.001), informant (P < 0.001) and total scores (P < 0.001) differed significantly between community-dwelling participants and nursing home residents. Worse cognitive performance on the P-GPCOG correlated significantly with worse scores on the AMTs (r = 0.61, P < 0.001) and less so with depressive symptoms as measured with the DIA-S (r = -0.20, P < 0.05). Cronbach's alpha for the P-GPCOG cognitive and informant subscales were 0.90 and 0.83 respectively, indicating a high degree of internal consistency and homogeneity between items. The test-retest correlation for the total P-GPCOG score was 0.82 in 30 participants after 19 days. P-GPCOG cognitive scores correlated significantly with education. Conclusion: The P-GPCOG displayed strong psychometric properties, offering healthcare professionals a quick and efficient cognitive instrument for older Persian speakers. As with other cognitive assessment tools, the P-GPCOG cognitive score is affected by a person's level of education.

Cognitive screening test in primary care: cut points for low education.

OBJECTIVE: To establish the diagnostic accuracy of the Brazilian version of the General Practitioner Assessment of Cognition (GPCOG-Br) compared to the Mini-Mental State Examination (MMSE) in individuals with low educational level. METHODS: Ninety-three patients (≥ 60 years old) from Brazilian primary care units provided sociodemographic, cognitive, and functional data. Receiver operating characteristics, areas under the curve (AUC) and logistic regressions were conducted. RESULTS: Sixty-eight patients with 0-4 years of education. Cases (n = 44) were older (p = 0.006) and performed worse than controls (n = 49) on all cognitive or functional measures (p < 0.001). The GPCOG-Br demonstrated similar diagnostic accuracy to the MMSE (AUC = 0.90 and 0.91, respectively) and similar positive and negative predictive values (PPV/NPV, respectively: 0.79/0.86 for GPCOG-Br and 0.79/0.81 for MMSE). Adjusted cut-points displayed high sensitivity (all 86%) and satisfactory specificity (65%-80%). Lower educational level predicted lower cognitive performance. CONCLUSIONS: The GPCOG-Br is clinically well-suited for use in primary care.

iSupport, an online training and support program for caregivers of people with dementia: study protocol for a randomized controlled trial in India.

BACKGROUND: Dementia has a huge physical, psychological, social and economic impact upon caregivers, families and societies at large. There has been a growing impetus to utilize Internet interventions given the potential scalability, and presumed cost-effectiveness and accessibility. In this paper, we describe the design of a randomized controlled trial (RCT) aiming to study the impact of online self-help programs on caregivers of people with dementia in India. The experimental group will receive an interactive training and support program and the comparison group will receive an education-only e-book. It will be among the first online support intervention RCTs for a mental health condition in a lower-middle income country. METHODS AND DESIGN: Two hundred and eight participants are expected to be recruited via several strategies (email, Internet and social media, telephone and face-to-face) starting in the Bangalore region of India. The inclusion criteria for participation in the trial are: (1) being 18 years or older, (2) being a self-reported caregiver of a person with dementia, (3) self-report that a family member has a diagnosis of dementia (AD8 ≥ 2), and experience caregiver distress (≥ 4 on a 1-item burden scale ranging from 1 to 10 or ≥ 4 or < 20 on the Center for Epidemiologic Study-Depression (CES-D) scale (10-item) or ≥ 4 or < 15 on the Generalized Anxiety Disorder Scale (7-item). The intervention group will be offered iSupport, an online self-help training and support program, enabling a personalized education plan with a maximum of 23 lessons. These modules present a range of topics from "what is dementia?" to "dealing with challenging behaviors like aggression." The comparison group will receive an education-only e-book containing similar content. The outcomes of this trial are: caregiver burden as measured by the 22-item Zarit Burden Scale, depressive symptoms, anxiety symptoms (primary outcomes), quality of life, person-centered attitude, self-efficacy and mastery (secondary outcomes). DISCUSSION: Based on the findings of this trial, we will examine the potential use and scale up of iSupport for caregiver distress in India. This style of online self-help programs could be expanded to other regions or countries or to other suitable caregiver groups. TRIAL REGISTRATION: Clinical Trials Registry-India (CTRI), ID: CTRI/2017/02/007876 .