OPTIMA-ID: development and validation of a medicine optimization tool for older adults with intellectual disability.

BACKGROUND: Older people (i.e. ≥40 years) with intellectual disability have unique medication needs and may experience high levels of potentially inappropriate prescribing. Despite the availability of tools to optimize older adults' prescriptions, there is no comprehensive tool specifically for use in older adults with intellectual disability. We aimed to develop a tool for this purpose: Optimizing Pharmaco-Therapy and Improving Medication for Ageing with Intellectual Disability (OPTIMA-ID). RESEARCH DESIGN AND METHODS: A draft tool was developed based on literature review and clinical expertise. Focus groups with healthcare professionals and people with intellectual disability were conducted to refine the tool. The tool was presented electronically to an expert panel for Delphi validation. Median level of agreement and 75th percentile values were used to establish if consensus was reached. Criteria were accepted, rejected, revised or removed to develop the final tool. RESULTS: Following two Delphi rounds, consensus on the content of OPTIMA-ID was reached for 67 prescribing criteria, 63 of which were agreed upon after Round 1 and a further 4 criteria accepted after Round 2. CONCLUSIONS: OPTIMA-ID contains 67 criteria that can optimize medications for older people with intellectual disability. Its effectiveness, feasibility and impact on patient outcomes need to be established.

The challenges of mental health of staff working with people with intellectual disabilities during COVID-19--A systematic review.

BACKGROUND: The COVID-19 pandemic has posed a great risk to the mental health of health workers (HWs). There are likely to be particular concerns for staff working with adults with an intellectual disability, where infection control may be more challenging. METHOD: We conducted a systematic review of original research examining the mental health of HWs working with people with intellectual disability, published between March 2020 and July 2021. RESULTS: Five original research studies were included. A high proportion of HWs working with people with intellectual disability reported having had poor mental health including stress, anxiety, and depression. This manifested in similar patterns as for other HWs and also some specific patterns seen as the need to manage increased rates of mental health issues of the people they support. Sources of support and resilience were also identified. CONCLUSION: The support system should target risk factors, answer unmet needs, and build resilience. More research is also required on the ongoing and long-term effects.

Staff mental health while providing care to people with intellectual disability during the COVID-19 pandemic.

Background: The COVID-19 pandemic has placed enormous strain on health systems around the world, undermining the mental health and wellbeing of healthcare workers. Supporting people with intellectual disabilities may be particularly challenging for workers, as some people with intellectual disabilities may have a limited understanding of the pandemic, and find it challenging to adhere to the restrictions imposed by public health guidelines such as social distancing, lockdowns and change in usual routine and activities. In addition, many people with intellectual disabilities have increased vulnerability to more negative effects of COVID-19, with significantly higher mortality rates. Although there is emerging research on the mental health of healthcare staff during this time, there has been little specific work on the mental health of staff working with people with intellectual disability, particularly a lack of qualitative research. Methods: The current study employed semi-structured interviews with 13 healthcare workers (12 women and 1 man) who were working with people with intellectual disability during the COVID-19 pandemic. The interview data were analysed using thematic content analysis. Findings: The participants spoke in depth about the challenges of the working environment, the impact of providing care during the pandemic on staff mental health, supporting staff mental health and wellbeing and learning for the future. Conclusions: Systematic efforts are required to protect the mental health of this staff cohort, as well as encouraging resilience and successful coping among staff themselves.

The impact of COVID-19 on people ageing with an intellectual disability in Ireland: Protocol for a follow-up survey.

Background:  The COVID-19 pandemic and associated lockdowns have had a dramatic impact on many people, but individuals with an intellectual disability, given the prevalence of congregate living and high levels of co-morbid conditions, may be particularly vulnerable at this time. A prior initial survey of participants of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) found that, despite a majority of participants being tested, only a small proportion had tested positive for COVID-19. Furthermore, despite some reporting positive aspects to the lockdown, a similar proportion were experiencing stress or anxiety during the pandemic. The pandemic and lockdowns have continued, and it is possible that experiences and consequences have changed over time. Aim: To explore over time and in greater depth the impact of COVID-19 and associated lockdowns and to further establish rates of infection, rates of vaccination and participants' experiences. Methods: A structured questionnaire for people with intellectual disability participating in the IDS-TILDA longitudinal study, to be administered by telephone/video in summer 2021. Where participants are unable to respond independently, a proxy respondent will be invited to either assist the participant or answer questions on their behalf. This questionnaire will include questions from the first COVID-19 questionnaire, with extra questions assessing "long COVID" (i.e. COVID-19 lasting for 12 weeks or longer), infection control behaviours, changes in mental health, social contacts and loneliness, frailty, healthcare, and incidence of vaccination. Impact: The results of this survey will be used to inform healthcare provision for people with intellectual disability during the latter stages of the lockdown and into the future.

The relationship between antiepileptic drug load and challenging behaviors in older adults with intellectual disability and epilepsy.

Antiepileptic drugs (AEDs) may affect mood and behavior in people with epilepsy and intellectual disability. A high AED load, derived from AED polytherapy and/or high doses of AEDs, has been suggested to be a risk factor for behavioral side effects. Data were drawn from Wave 3 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). The Behavior Problems Inventory Short Form (BPI-S) was used to assess challenging behaviors. AED load was calculated and median AED loads obtained. Non-parametric tests and binary logistic regression were performed to determine the relationship between AED load and challenging behaviors. Of participants with a reported diagnosis of epilepsy who were taking a regular AED and had completed BPI-S (n = 142), 62.7% (n = 89) exhibited challenging behaviors. Challenging behavior was found to be more prevalent in those with more severe levels of intellectual disability (p < 0.001). Aggressive/destructive behavior and stereotyped behavior were significantly more likely in participants living in residential/campus settings. For participants with a severe/profound intellectual disability, a significantly higher median AED load was found for participants exhibiting aggressive/destructive behavior and self-injurious behavior (SIB) compared to participants not exhibiting these behaviors, indicating a high AED load may contribute to some behavioral problems in this population group. However, many factors can influence behavioral outcomes, creating difficulties in determining those that are associated and the nature of the association. Careful monitoring of AED load, together with increased vigilance for breakthrough behavioral issues is essential for dealing with these complex cases. Larger studies are needed to account for the potential confounding factors.

Antiepileptic drugs, occurrence of seizures and effect of co-administration of potential seizure threshold-lowering psychotropic drugs in adults with intellectual disability who have epilepsy.

BACKGROUND: This study explored antiepileptic drug use, frequency of seizures, and the effect of psychotropic drugs with the potential to lower the seizure threshold in persons diagnosed with epilepsy and intellectual disability. METHODS: Data for this study were drawn from Wave 3 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). Psychotropic drugs were categorised for potential seizure threshold-lowering risk (low, moderate, high). Binary logistic regression was performed to identify factors associated with seizure frequency. RESULTS: Epilepsy prevalence was 35.8% (n = 196), of which 57.7% reported a mental health condition. Participants with seizure data classified as taking at least one moderate-/high-risk medication were significantly less likely to experience a seizure compared to participants taking no potential seizure threshold-lowering medication. CONCLUSIONS: Psychotropic drugs recommended to be avoided or used with caution did not provoke increased seizure frequency in this cohort.

Drug burden index to define the burden of medicines in older adults with intellectual disabilities: An observational cross-sectional study.

AIMS: The drug burden index (DBI) is a dose-related measure of anticholinergic and sedative drug exposure. This cross-sectional study described DBI in older adults with intellectual disabilities (ID) and the most frequently reported therapeutic classes contributing to DBI and examined associations between higher DBI scores and potential adverse effects as well as physical function. METHODS: This study analysed data from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a representative study on the ageing of people with ID in Ireland. Self- and objectively-reported data were collected on medication use and physical health, including health conditions. The Barthel index was the physical function measure. RESULTS: The study examined 677 individuals with ID, of whom 644 (95.1%) reported taking medication and 78.6% (n = 532) were exposed to medication with anticholinergic and/or sedative activity. 54.2% (n = 367) were exposed to high DBI score (≥1). Adjusted multivariate regression analysis revealed no significant association between DBI score and daytime dozing, constipation or falls. After adjusting for confounders (sex, age, level of ID, comorbidities, behaviours that challenge, history of falls), DBI was associated with significantly higher dependence in the Barthel index (P = 0.002). CONCLUSIONS: This is the first time DBI has been described in older adults with ID. Scores were much higher than those observed in the general population and higher scores were associated with higher dependence in Barthel index activities of daily living.

Association of anticholinergic burden with adverse effects in older people with intellectual disabilities: an observational cross-sectional study.

BACKGROUND: No studies to date have investigated cumulative anticholinergic exposure and its effects in adults with intellectual disabilities. AIMS: To determine the cumulative exposure to anticholinergics and the factors associated with high exposure. METHOD: A modified Anticholinergic Cognitive Burden (ACB) scale score was calculated for a representative cohort of 736 people over 40 years old with intellectual disabilities, and associations with demographic and clinical factors assessed. RESULTS: Age over 65 years was associated with higher exposure (ACB 1-4 odds ratio (OR) = 3.28, 95% CI 1.49-7.28, ACB 5+ OR = 3.08, 95% CI 1.20-7.63), as was a mental health condition (ACB 1-4 OR = 9.79, 95% CI 5.63-17.02, ACB 5+ OR = 23.74, 95% CI 12.29-45.83). Daytime drowsiness was associated with higher ACB (P<0.001) and chronic constipation reported more frequently (26.6% ACB 5+ v. 7.5% ACB 0, P<0.001). CONCLUSIONS: Older people with intellectual disabilities and with mental health conditions were exposed to high anticholinergic burden. This was associated with daytime dozing and constipation.

Obstetric adversity and age at first presentation with schizophrenia: evidence of a dose-response relationship.

OBJECTIVE: The purpose of the study was to determine if a dose-response relationship exists between obstetric adversity and age at first presentation with schizophrenia. METHOD: The Dublin Psychiatric Case Register was used to identify subjects with schizophrenia. Data on obstetric complications, social class of origin, and family history of psychiatric illness were obtained for those subjects. RESULTS: A total of 409 patients with ICD-9 schizophrenia were identified. Patients with a history of obstetric complications presented earlier to psychiatric services. As the number of complications increased, the mean age at first presentation decreased. This effect was independent of social class of origin and family history of psychiatric illness. CONCLUSIONS: Obstetric adversity exerts an independent influence on the age at first presentation with schizophrenia, in a dose-response manner. This finding supports the existence of a causal relationship between obstetric adversity and age at first presentation with schizophrenia.

Infanticide and child murder - admissions to the Central Mental Hospital 1850-2000.

Infanticide and child murders have been known to all civilisations throughout time. This study looks at the problem from an Irish perspective, particularly with regard to the forensic psychiatry service. The case notes and legal files of 64 women admitted to the Central Mental Hospital (CMH), Dublin, between May 1850 and 2000 were examined. This group represents a complete sample of female inpatients charged with these offenses over the 150 year history of the institution. Sociodemographic and clinical data were analysed to provide psychiatric and social backgrounds to the cases. There has been a considerable decrease in the number of women admitted to the CMH on charges or conviction for infanticide and child murder in recent years. It appears that the attitude of the judiciary to these women has altered. The cases are discussed in the context of the prevailing attitudes of the era.