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.

BackgroundAdults 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.AimTo probe the cumulative exposure to anticholinergics and the demographic, social and clinical factors associated with high exposure.MethodsThe 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.ResultsOverall, 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).ConclusionsPsychotropic 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.

Dementia appears at a higher rate among some adults with intellectual disabilities (ID) and this potentially poses a greater risk of nursing home admission. Yet, to date, there is no evidence on the efficacy of general dementia-derived environment-, personnel-, and patient-oriented intervention strategies in delaying onset of dementia or in slowing down its rate of progression in this population. To investigate the feasibility and efficacy of a multicomponent nonpharmacological approach, the authors studied a sample of 14 adults with worsening cognition and everyday functioning who were no longer manageable by their family or staff in day centers or group homes, and who were relocated in a model special care unit (SCU) designed to proactively accommodate the needs of people with ID and dementia. Baseline level and rate of decline across a 3-year period were assessed by means of the Dementia Questionnaire for Persons with Intellectual Disabilities and compared to two control groups not in dementia-capable programs matched for age, sex, and severity of ID. After 3 years, the authors found some improvement in cognition and stabilization in everyday functioning and behaviors in the SCU residents and a worsening in the control groups. The authors noted that enrollment in a dementia-capable program facilitated daily practice of residents' residual skills and abilities, enhancing their memory and verbal communication, that the prosthetic environment contributed to activity maintenance and appropriate intellectual challenges, and that the greater participation on an individual level added to the skill maintenance. Although the interpretation of these positive findings is not straightforward, they confirm the validity of this "in-place progression" model and provide a platform for continuing progress in person-centered services and care for aging persons with ID.

Background: A growing body of evidence attests to the disproportionate impact of COVID-19 on persons with intellectual and developmental disabilities (IDD) during the pandemic. This study asked caregivers about their perceptions of how COVID-19 impacted them and the people they support. Method: An online survey was conducted in 12 countries during August-September 2020 and sought information on demographics, support practices, information and training, experiences of COVID-19, social distancing, and wellbeing, as measured by the DASS12. This study reports on 3,754 family members, direct support professionals, and managers who participated in the survey. Results: Caregivers observed increases in depression/anxiety, stereotyped behaviours, aggression towards others and weight gain in the person(s) they supported. They also reported difficulties supporting the person(s) to access healthcare.  Families reported reducing or ceasing employment and absorbed additional costs when supporting their family member. Direct support professionals experienced changes in staff shifts, staff absences, increased workload and hiring of casual staff. Caregivers’ wellbeing revealed high levels of stress, depression, and less so anxiety. The strongest predictor of wellbeing among families was observation of changes in mood in the person(s) they supported, while for direct support professionals, the strongest predictors of wellbeing were reorganisation of staff shifts and increases in new direct support staff.  Discussion: Findings support the contention of this population experiencing a disproportionate burden during the COVID-19 pandemic, reflecting historical inequities in access to healthcare and other human rights violations which are now protected under the United Nations Convention on the Rights of Persons with Disabilities.

These results confirm the reliability and validity of AFAST-I and emphasise the complexity of the relationship among functional status, cognitive functioning and behaviour also in adults/seniors with ID.