COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers.

Background: This protocol outlines research to explore the impact of coronavirus disease 2019 (COVID-19) on individuals who have intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore the impact of COVID-19 on this population in terms of demographics, living arrangements, access to services, the impact of social distancing, and also carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 16 countries worldwide for international comparison. The survey team have extensive personal and professional networks in intellectual disability and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

Anticholinergic burden in adult and elderly people with intellectual disabilities: Results from an Italian multicenter cross-sectional study.

BACKGROUND: Adults and older people with intellectual disabilities (ID) frequently receive anti-cholinergic drugs in chronic use, but no studies in Italy to date have investigated cumulative anticholinergic exposure and factors associated with high anticholinergic burden in this frail population. AIM: To probe the cumulative exposure to anticholinergics and the demographic, social and clinical factors associated with high exposure. METHODS: The 2012 updated version of the Anticholinergic Burden Score (ACB) was calculated for a multicentre sample of 276 adult and older people over 40 years with ID and associations with factors assessed. RESULTS: Overall, antipsychotics, antiepileptics, anxiolytics, and antidepressants were the most frequent classes contributing to the total ACB score. People living in residential care were more likely exposed to high anticholinergic burden (an ACB score of 3+): both community housing (odds ratio [OR] 4.63, 95%CI 1.08-19.95) and nursing home facility ([OR] 9.99, 95%CI 2.32-43.04). There was also a significant association between an ACB score of 3+ and reporting mental health conditions ([OR] 25.56, 95% CI 8.08-80.89) or a neurological disease ([OR] 4.14, 95%CI 1.32-12.94). Neither demographic characteristics (age and gender) nor other clinical conditions (somatic comorbidity, levels and typology of ID) were associated with higher anticholinergic load. A high burden of anticholinergic was significantly more frequent in laxative users (22.6% ACB3+ vs. 5.1% ACB 0) (p = 0.003). CONCLUSIONS: Psychotropics drugs were the highest contributors to the anticholinergic burden in adult and old age ID, especially in those people living in institutional settings with mental health and/or neurological conditions. High anticholinergic load has shown to be associated with the use of laxatives.

Perspectives on family caregiving of people aging with intellectual disability affected by dementia: Commentary from the International Summit on Intellectual Disability and Dementia.

This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examines familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offer context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model has two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving is influenced by stage of dementia. We propose staging can affect caregiving via different expressions: (1) the "diagnostic phase," (2) the "explorative phase," (3) the "adaptive phase," and (4) the "closure phase." The international narratives illustrate direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. We conclude that the model is the first to empirically formalize the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognizes the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services, and setting public policy.

International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans.

The World Health Organization (WHO) has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down's syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. An International Summit on Intellectual Disability and Dementia, held in Scotland, reviewed the inclusion of ID in national plans and recommended that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes, and greater advocacy is required from national organizations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

A Multicentre Italian Validation Study in Aging Adults with Down Syndrome and Other Forms of Intellectual Disabilities: Dementia Screening Questionnaire for Individuals with Intellectual Disabilities.

BACKGROUND: The USA National Task Group (NTG) guidelines advocate the use of an adapted version of Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) for dementia screening of individuals with Down syndrome (DS) and with other forms of ID (non-DS). OBJECTIVE: In order to meet these guidelines, this study verifies the psychometric properties of an Italian version of the original DSQIID in a population composed of adults aged 40 years and over with DS and non-DS ID. METHODS: Internal consistency, inter-rater and intra-rater reliabilities, structural validity, convergent validity and known group differences of DSQIID-I were assessed with 200 individuals with ID (mean of 55.2 years; range: 40-80 years) recruited from 15 different centers in Italy. Diagnosis of dementia was done according to IASSID diagnostic criteria and its degree of clinical certainty was defined according to Silverman et al.'s classification (2004). RESULTS: Cronbach's alpha for the DSQIID-I was 0.94. The ICCs for inter-rater and test-retest reliability were both 0.89. A Principal Component analysis revealed three domains, namely memory and confusion- related items, motor and functional disabilities, depression and apathy, which explained almost 40% of the overall variance. The total DSQIID-I score correlated significantly with DMR and differed significantly among those individuals (n = 34) with cognitive decline from those without (n = 166). Age, gender and severity of ID were unrelated to the DSQIID-I. CONCLUSION: The present study confirms the cross-cultural value of DSQIID which was proved to be a psychometrically valid and user-friendly observer-rated scale for dementia screening in adults with both DS and non-DS ID.

Farmland biodiversity and agricultural management on 237 farms in 13 European and two African regions.

Farmland is a major land cover type in Europe and Africa and provides habitat for numerous species. The severe decline in farmland biodiversity of the last decades has been attributed to changes in farming practices, and organic and low-input farming are assumed to mitigate detrimental effects of agricultural intensification on biodiversity. Since the farm enterprise is the primary unit of agricultural decision making, management-related effects at the field scale need to be assessed at the farm level. Therefore, in this study, data were collected on habitat characteristics, vascular plant, earthworm, spider, and bee communities and on the corresponding agricultural management in 237 farms in 13 European and two African regions. In 15 environmental and agricultural homogeneous regions, 6-20 farms with the same farm type (e.g., arable crops, grassland, or specific permanent crops) were selected. If available, an equal number of organic and non-organic farms were randomly selected. Alternatively, farms were sampled along a gradient of management intensity. For all selected farms, the entire farmed area was mapped, which resulted in total in the mapping of 11 338 units attributed to 194 standardized habitat types, provided together with additional descriptors. On each farm, one site per available habitat type was randomly selected for species diversity investigations. Species were sampled on 2115 sites and identified to the species level by expert taxonomists. Species lists and abundance estimates are provided for each site and sampling date (one date for plants and earthworms, three dates for spiders and bees). In addition, farmers provided information about their management practices in face-to-face interviews following a standardized questionnaire. Farm management indicators for each farm are available (e.g., nitrogen input, pesticide applications, or energy input). Analyses revealed a positive effect of unproductive areas and a negative effect of intensive management on biodiversity. Communities of the four taxonomic groups strongly differed in their response to habitat characteristics, agricultural management, and regional circumstances. The data has potential for further insights into interactions of farmland biodiversity and agricultural management at site, farm, and regional scale.

Age-related changes of adaptive and neuropsychological features in persons with Down Syndrome.

Down Syndrome (DS) is characterised by premature aging and an accelerated decline of cognitive functions in the vast majority of cases. As the life expectancy of DS persons is rapidly increasing, this decline is becoming a dramatic health problem. The aim of this study was to thoroughly evaluate a group of 67 non-demented persons with DS of different ages (11 to 66 years), from a neuropsychological, neuropsychiatric and psychomotor point of view in order to evaluate in a cross-sectional study the age-related adaptive and neuropsychological features, and to possibly identify early signs predictive of cognitive decline. The main finding of this study is that both neuropsychological functions and adaptive skills are lower in adult DS persons over 40 years old, compared to younger ones. In particular, language and short memory skills, frontal lobe functions, visuo-spatial abilities and adaptive behaviour appear to be the more affected domains. A growing deficit in verbal comprehension, along with social isolation, loss of interest and greater fatigue in daily tasks, are the main features found in older, non demented DS persons evaluated in our study. It is proposed that these signs can be alarm bells for incipient dementia, and that neuro-cognitive rehabilitation and psycho-pharmacological interventions must start as soon as the fourth decade (or even earlier) in DS persons, i.e. at an age where interventions can have the greatest efficacy.

Gains to species diversity in organically farmed fields are not propagated at the farm level.

Organic farming is promoted to reduce environmental impacts of agriculture, but surprisingly little is known about its effects at the farm level, the primary unit of decision making. Here we report the effects of organic farming on species diversity at the field, farm and regional levels by sampling plants, earthworms, spiders and bees in 1470 fields of 205 randomly selected organic and nonorganic farms in twelve European and African regions. Species richness is, on average, 10.5% higher in organic than nonorganic production fields, with highest gains in intensive arable fields (around +45%). Gains to species richness are partly caused by higher organism abundance and are common in plants and bees but intermittent in earthworms and spiders. Average gains are marginal +4.6% at the farm and +3.1% at the regional level, even in intensive arable regions. Additional, targeted measures are therefore needed to fulfil the commitment of organic farming to benefit farmland biodiversity.

Psychometric evaluation of the Italian version of the AADS questionnaire: a caregiver-rated tool for the assessment of behavioral deficits and excesses in persons with intellectual disabilities and dementia.

BACKGROUND: The aim of this study was to verify the reliability and validity of the Italian version of the Assessment for Adults with Developmental Disabilities (AADS-I), the only available measure specifically designed to assess the frequency, management difficulties and impact on the quality of life (QoL) of positive and negative non-cognitive symptoms in persons with intellectual disabilities (ID) and dementia. METHODS: AADS-I was administered to professional carers of 63 aging ID individuals. We computed the internal consistency separately of the frequency, management difficulty and effect on the QoL subscales of Behavioral Excesses and Behavioral Deficits and their inter-rater and test-retest reliabilities. RESULTS: Homogeneity of AADS-I was found to range from good to excellent: Cronbach's α coefficients were 0.77, 0.83 and 0.82, respectively for frequency, management difficulty and effect on the QoL of Behavioral Excesses, and 0.82, 0.76 and 0.79 of Behavioral Deficits. Intraclass correlation coefficients (ICC) between two independent carers were 0.67, 0.79 and 0.73 and 0.67, 0.67 and 0.67 for frequency, management difficulty and effect on the QoL of Behavioral Excesses and Deficits, respectively. Corresponding ICC for test-retest reliability were 0.80, 0.75, 0.78 and 0.70, 0.81, 0.81. Age, gender and typology of ID did not correlate with the AADS-I subscale scores, whereas the severity of ID related only with the frequency subscale of Behavioral Deficits. This subscale also correlated with the Dementia Questionnaire for Persons with Intellectual Disabilities. Behavioral deficits are more frequent in subjects with dementia. CONCLUSIONS: These results confirm the reliability and validity of the Italian version of AADS.