The relationship of dementia prevalence in older adults with intellectual disability (ID) to age and severity of ID

Background: Previous research has shown that adults with intellectual disability (ID) may be more at risk of developing dementia in old age than expected. However, the effect of age and ID severity on dementia prevalence rates has never been reported. We investigated the predictions that older adults with ID should have high prevalence rates of dementia that differ between ID severity groups and that the age-associated risk should be shifted to a younger age relative to the general population. Method: A two-staged epidemiological survey of 281 adults with ID without Down syndrome (DS) aged >60 years; participants who screened positive with a memory task, informant-reported change in function or with the Dementia Questionnaire for Persons with Mental Retardation (DMR) underwent a detailed assessment. Diagnoses were made by psychiatrists according to international criteria. Prevalence rates were compared with UK prevalence and European consensus rates using standardized morbidity ratios (SMRs). Results: Dementia was more common in this population (prevalence of 18.3%, SMR 2.77 in those aged >65 years). Prevalence rates did not differ between mild, moderate and severe ID groups. Age was a strong risk factor and was not influenced by sex or ID severity. As predicted, SMRs were higher for younger age groups compared to older age groups, indicating a relative shift in age-associated risk. Conclusions: Criteria-defined dementia is 2–3 times more common in the ID population, with a shift in risk to younger age groups compared to the general population

Reduction or discontinuation of antipsychotics for challenging behaviour in adults with intellectual disability: a systematic review

The use of antipsychotics to manage challenging behaviour in adults with intellectual disability is widespread but controversial, and evidence is scarce. There is a perception that antipsychotics used in this context can be reduced or discontinued, and this has been a major focus of recent national policy. However, such an intervention risks harm as well as having potential benefits. We reviewed the available evidence and found that antipsychotics can be reduced or discontinued in a substantial proportion of adults who use them for challenging behaviour, although not always without adverse effects. There is a group which displays behavioural deterioration on antipsychotic reduction that prevents discontinuation; predictors of poor response could not be reliably identified. In view of the relatively scarce data and methodological limitations of the available studies, we cannot draw firm conclusions to inform a population level approach to this issue. Antipsychotic medication used for behaviour should be reviewed regularly and an individualised approach taken to treatment

Digital mental health and intellectual disabilities: state of the evidence and future directions

The use of digital technologies in the management of mental illness, and more generally in the promotion of well-being and mental health, has received much recent attention and is a focus of current health policy. We conducted a narrative review to explore the opportunities and risks of digital technologies in mental healthcare specifically for people with intellectual disability, a sometimes marginalised and socially excluded group. The scope of digital mental health is vast and the promise of cheaper and more effective interventions delivered digitally is attractive. People with intellectual disability experience high rates of mental illness and could benefit from the development of novel therapies, yet seem to have been relatively neglected in the discourse around digital mental health and are often excluded from the development and implementation of new interventions. People with intellectual disability encounter several barriers to fully embracing digital technology, which may be overcome with appropriate support and adaptations. A small, but growing, literature attests to the value of incorporating digital technologies into the lives of people with intellectual disability, not only for promoting health but also for enhancing educational, vocational and leisure opportunities. Clearly further evidence is needed to establish the safety and clinical efficacy of digital mental health interventions for people with and without intellectual disability. A digital inclusion strategy that explicitly addresses the needs of people with intellectual disability would ensure that all can share the benefits of the digital world

Achieving better health for people with intellectual disability: the power of policy

People with intellectual disability have high mental and physical healthcare needs, which must be addressed on individual, local and national levels. Policy interventions informed by research and stakeholder views and extending beyond a focus on health are needed to reduce inequities in this group

Assessing Specific Cognitive Deficits Associated with Dementia in Older Adults with Down Syndrome: Use and Validity of the Arizona Cognitive Test Battery (ACTB)

BACKGROUND: Down syndrome is associated with specific cognitive deficits. Alongside this, older adults with Down syndrome are a high risk group for dementia. The Arizona Cognitive Test Battery (ACTB), a cognitive assessment battery specifically developed for use with individuals with Down syndrome, has been proposed for use as outcome measures for clinical trials in this population. It has not been validated in older adults with Down syndrome. This study aims to assess the use and validity of the ACTB in older adults with Down syndrome. METHODS: Participants with Down syndrome aged 45 and over were assessed using the ACTB, standard tabletop tests and informant ratings. RESULTS: Assessment outcomes of 49 participants were analysed. Of these, 19 (39%) had a diagnosis of dementia or possible dementia. Most participants were able to attempt most of the tasks, although some tasks had high floor effects (including CANTAB Intra-Extra Dimensional shift stages completed and Modified Dots Task). Of the ACTB tasks, statistically significant differences were observed between the dementia and no dementia groups on CANTAB Simple Reaction Time median latency, NEPSY Visuomotor Precision-Car and Motorbike and CANTAB Paired Associates Learning stages completed. No significant differences were observed for CANTAB Intra-Extra Dimensional Shift, Modified Dots Task, Finger Sequencing, NEPSY Visuomotor precision-Train and Car and CANTAB Paired Associates Learning first trial memory score. Several of the tasks in the ACTB can be used in older adults with Down syndrome and have mild to moderate concurrent validity when compared to tabletop tests and informant ratings, although this varies on a test by test basis. CONCLUSIONS: Overall, scores for a number of tests in the ACTB were similar when comparing dementia and no dementia groups of older adults with Down syndrome, suggesting that it would not be an appropriate outcome measure of cognitive function for clinical trials of dementia treatments without further modification and validation

Forced Marriage among Persons with Intellectual Disabilities: Discussion Paper

Global human rights laws grant all individuals with disabilities, including individuals with intellectual disabilities, the right to marry and have families. In those cases however, where marriages are arranged between an individual with an intellectual disability and another (whether non-disabled or disabled) against the will of the intellectually disabled person, such marriages can be considered forced. According to the UK government, a forced marriage ‘is a marriage conducted without the valid consent of both parties, where duress is a factor’. This paper comments on the ‘forced marriage’ of persons with intellectual disabilities, a practice found within several ethnic and minority communities in the UK, where arranged marriages are common. While arranged marriages are entered into with the consent of both potential spouses, in forced marriages it may well be the case that at least one of the parties is unable to consent due to lack of capacity. In such cases, coercion is implicit. We believe that this practice is not unique to the UK and globalisation and international migration has increased the risk of persons with intellectual disabilities being forced into social contracts such as marriage, of which they have little understanding. The implications of such marriages for persons with intellectual disabilities themselves as well as for their partners and their families are significant and need to be more widely acknowledged and discussed

Coercion as a response to violence in mental health-care settings

Aggressive and violent behaviour are major public health problems. The association of these behaviours with severe mental illness has been controversial and supported by some but not all research.1 The display of aggressive or violent behaviour can be a final endpoint of the various underpinning causes of mental illness (eg, distress, frustration, cognitive impairment, substance misuse, low self-control, and high trait anger) relating to intrinsic and distal processes, including the person, the environment, and the person's social networks. The possible association with mental illness might, in part, drive public negative perceptions and stigmatisation of people with these mental disorders, and the mandated imposition of treatment to avert further risk of interpersonal violence might even exacerbate stigma

Inequalities in Health and Service Use among People with Borderline Intellectual Impairment

This report, produced in collaboration with Professor Angela Hassiotis and others, sets out the extent to which people with borderline intellectual impairment face inequalities in health and use of services compared with the rest of the population, and seeks to improve awareness of these inequalities. Findings - Borderline intellectual impairment is common, affecting at least one adult in ten in England. The term is used here to refer to people with good verbal skills and living in private households, but who may experience cognitive impairments. - The findings in this report are consistent with previous research: people with borderline intellectual impairment are a disadvantaged group and their needs are not well understood. - Such adults face high levels of poor mental health, poorer general health, and many limitations in their daily lives. - Their level of use of mental health treatment and services does not appear to be commensurate with their higher level of need. This indicates that they are underserved compared with the rest of the population. - This may be due to a lack of professional awareness of their needs, to services not adapting enough to meet those needs, or to difficulties the individual faces in seeking treatment and support. - Adults with borderline intellectual impairment constitute key users of primary and secondary health care, and employment, education and welfare support. Improving awareness of the needs of this group should form part of wider plans to reduce inequalities in health and service use in England. Methods Secondary analysis of data from the Adult Psychiatric Morbidity Survey (APMS) was conducted to profile the circumstances of people with borderline intellectual impairment. APMS is one of the most authoritative and comprehensive national household surveys to assess both intellectual functioning and mental health in adults in England

Extended brief intervention to address alcohol misuse in people with mild to moderate intellectual disabilities living in the community (EBI-ID): study protocol for a randomised controlled trial.

There is some evidence that people with intellectual disabilities who live in the community are exposed to the same risks of alcohol use as the rest of the population. Various interventions have been evaluated in the general population to tackle hazardous or harmful drinking and alcohol dependence, but the literature evaluating interventions is very limited regarding intellectual disabilities. The National Institute for Health and Clinical Excellence recommends that brief and extended brief interventions be used to help young persons and adults who have screened as positive for hazardous and harmful drinking. The objective of this trial is to investigate the feasibility of adapting and delivering an extended brief intervention (EBI) to persons with mild/moderate intellectual disability who live in the community and whose level of drinking is harmful or hazardous