A national cohort study of spiritual and religious practices of older people with intellectual disability.

Background: Spirituality and spiritual support for older people with intellectual disability are deemed important, however little is known about their specific needs. This paper reports for the first time on the religious and spiritual practices of older adults with intellectual disability. Methods: A national longitudinal study examined the prevalence of spiritual practices among older people with intellectual disability in the Republic of Ireland. Results: Older people with intellectual disability seek and receive solace from religious and spiritual practices, especially if they are lonely, in poor health, distressed or bereaved. There is likely a social benefit to spiritual and religious aspects of life that would be beneficial to explore further. Conclusions: Globally more research is required and efforts should be made to ensure greater opportunities for inclusion in societal spiritual and religious activities and to more clearly determine the spiritual needs of this population.

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.

The impact of coronavirus disease 2019 (COVID-19) on older adults with an intellectual disability during the first wave of the pandemic in Ireland.

Background: People with intellectual disability have increased risk of exposure to and adverse outcomes from coronavirus disease 2019 (COVID-19).They also face challenges to mental health and well-being from COVID-19-related social restrictions and service closures. Methods: Data from a supplemental COVID-19 survey from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) (n=710) was used to assess outcomes from the first infection wave of COVID-19 among adults with intellectual disability aged 40+ years in Ireland. Data was gathered on testing, for symptoms and outcomes; procedures to manage COVID-19; and both stress/anxiety and positive experiences during the pandemic. Demographic and health-related data from the main IDS-TILDA dataset was included in analyses. Results: High rates were identified of health conditions associated with poorer COVID-19 outcomes, including overweight/obesity (66.6%, n=365), high cholesterol (38.6%, n=274) and cardiovascular disease (33.7%, n=239). Over half (53.5%, n=380) reported emotional, nervous or psychiatric disorders. Almost two-thirds (62.4%, n=443) were tested for COVID-19, with 10% (n=71) reporting symptoms and 2.5% (n=11) testing positive. There were no instances of COVID-19 related mortality. Common symptoms included fatigue, fever, and cough. Some participants (7.8%, n=55) moved from their usual home to isolate, most often (n=31) or relocate to a family home (n=11). Three-quarters (78.7%) of those who were symptomatic or who tested positive had plans to manage self-isolation and two-thirds were able to comply with guidelines. Over half (55%, n=383) reported some COVID-19 related stress/anxiety; and a similar proportion reported positive aspects during this period (58%, n=381). Conclusions: Our data suggests that people with intellectual disability avoided the worst impacts of COVID-19 during the first infection wave in Ireland. Nevertheless, participants' health profiles suggest that this population remains at high risk for adverse infection outcomes. Repeated measures are needed to track health and well-being outcomes across multiple infection waves.