Diagnosis, Treatment and Rehabilitation in Health Services for Patients with Intellectual Disability and Mental Health Problems

Context: The care of adults with intellectual disabilities is marginalized and rarely studied in Poland. In recent years, this issue has gained particular importance, partly due to the increasing life expectancy of people with ID. This paper presents a study of the function of informal caregivers for adults with ID, comprising parents who provide regular, constant, physical and emotional support and assistance with everyday activities to their adult children. Due to cultural and institutional conditions, Polish society sets high expectations for families regarding the care of their dependent members. Social policy also mainly promotes informal care, with formal care only being supported to a very limited extent. The state delegates responsibility, including financial responsibility, to families. With the rapid aging of society, this situation poses great challenges. Methods: This study was conducted in the Łodź region of Poland; it used a qualitative approach, and a semi-structured interview was performed using the narrative elements technique. The main goal of the research was to understand the situation of caregivers to adults with an intellectual disability by identifying thematic categories in the respondents’ statements. The analysis of the qualitative data content made it possible to capture and present the participants’ personal perspectives on significant issues connected with their function in the context of providing care to an adult with an intellectual disability. A total of 12 interviews were conducted. The age of the respondents (caregivers) was 51–82 years old, and the individuals they were caring for were between 20 and 49 years old. Results: Based on the materials collected, 13 thematic categories and subcategories were identified, along with illustrative examples. The main categories concerned everyday functioning, health, uncertainty, relationships with others, feelings, time, and the macro level. For each category, subcategories were distinguished and illustrated by the respondents’ statements. The categories and subcategories were not completely distinct; sometimes they overlapped or complemented one another. Conclusions: For the majority of the respondents, the care of an adult with an intellectual disability had a negative effect on their well-being. As a consequence, they performed their caregiver’s role at the expense of their own lifestyle. Noticeable themes included “addiction” to caregiving, psychophysical fatigue, and the needs and difficulties resulting from this being “ignored” by the commonly understood social environment (including state institutions). Thus, the care of dependent adults with ID should be viewed on a broad human spectrum, that is, in consideration of the unique situation of those who remain under permanent care provided by family members, those who live alone, and those whose loved ones try to combine caregiving with their own private lives. This is becoming all the more important, as the number of seniors with intellectual disabilities will continue to grow in the coming decades. Full article

The juvenile variant of Neuronal Ceroid Lipofuscinosis (CLN3 disease/Batten disease) is a rare progressive brain disease in children and young adults, characterized by vision loss, decline in cognitive and motor capacities and epilepsy. Children with CLN3 disease often show disturbed behaviour and emotions. The aim of this study is to gain a better understanding of the behaviour and emotions of children with CLN3 disease and to examine the support that the children and their parents are receiving. A combination of qualitative and quantitative analysis was used to analyse patient files and parent interviews. Using a framework analysis approach a codebook was developed, the sources were coded and the data were analysed. The analysis resulted in overviews of (1) typical behaviour and emotions of children as a consequence of CLN3 disease, (2) the support children with CLN3 disease receive, (3) the support parents of these children receive, and (4) the problems these parents face. For a few children their visual, physical or cognitive deterioration was found to lead to specific emotions and behaviour. The quantitative analysis showed that anxiety was reported for all children. The presented overviews on support contain tacit knowledge of health care professionals that has been made explicit by this study. The overviews may provide a lead to adaptable support-modules for children with CLN3 disease and their parents. Full article

People with intellectual disabilities (PwID) are at a higher risk of developing challenging behaviours (CB). Despite the poor evidence for the effectiveness of medications in managing CB, they are used widely among PwID (50–63%). The aims of our study were to develop a training programme, SPECTROM for support staff to help reduce overmedication in PwID and carry out field testing of SPECTROM including a process evaluation. We developed SPECTROM using the Experience-based co-design method that included four focus groups and a one-day co-design event. Twenty trainees received SPECTROM training. We used the Management of Aggression and Violence Attitudes Scale-Revised-Intellectual Disabilities (MAVAS-R-ID) and the Psychotropic knowledge questionnaire. A semi-structured interview and a feasibility questionnaire were used for process evaluation. SPECTROM website contains 14 modules, resources, and face-to-face training. MAVAS-R-ID scores showed change in staff attitude to ‘medication management’ domain was statistically significant (p < 0.05). Psychotropic knowledge questionnaire showed statistically significant post-training improvement in correct responses (p < 0.05). Process evaluation data showed that SPECTROM was acceptable, applicable, practical, and relevant to staff practice, and helped to improve self-reflection, knowledge, and support to PwID. SPECTROM is a useful training that helps to change the support staff’s attitude toward CB and improve their knowledge of psychotropic medications. Full article

Challenging behaviour displayed by people with intellectual disabilities (ID) can be difficult to manage if caregivers do not understand the reasons for the behaviour. Identifying the contextual variables/triggers for the behaviour is likely to help undertake a functional analysis leading to a person-centred positive behaviour support plan. Currently, a limited number of checklists are available for trigger assessment and none were developed using an interview with the family caregivers. This article describes the development and contents of the comprehensive assessment of triggers for behaviours of concern scale (CATS). CATS was developed in two stages. Stage 1 used a ‘bottom-up’ approach, in which caregivers of adults with ID who show aggressive behaviour were interviewed to identify the triggers for aggression. In stage two, using a ‘top-down’ approach, a comprehensive literature review was conducted to gather items from existing trigger checklists. Trigger items from both stages were combined and the duplicates were removed. The final list in CATS consists of 333 contextual triggers categorised under five main domains and 12 subdomains. CATS can be used by caregivers to identify triggers or antecedents of challenging behaviour. Further work is needed to test its psychometric properties, utility, and acceptability. Full article

The new Dutch Care and Coercion Act aims to better regulate the use of psychotropic drugs for challenging behaviour in people with an intellectual disability. This study explores experiences of intellectual disability physicians (IDPs) in prescribing psychotropic drugs and investigates how the Act and the new multidisciplinary guideline on challenging behaviour affects their practice. A qualitative study was conducted, consisting of nine semi-structured in-depth interviews with IDPs, followed by a thematic analysis. It was found that IDPs experienced the new Act and guideline as supportive of their work as guardians of the appropriate use of psychotropic drugs. The multidisciplinary character of the guideline was experienced positively. However, IDPs are faced with organisational barriers and time constraints, as such, they question the feasibility of implementing the Act. Based on these findings, it can be concluded that the Care and Coercion Act may support the existing shift towards the appropriate use of psychotropic drugs if required conditions can be met. Full article

Apathy, a feeling of indifference or a general lack of interest and motivation to engage in activity, is one of the most common neuropsychiatric symptoms in Parkinson’s disease (PD). The large variation in prevalence and the underlying pathophysiological processes remain unclear due to heterogeneous PD populations. The purpose of this study was to identify risk factors for apathy, the modification or treatment of which may be clinically relevant and improve quality of life and caregiver burden for patients with Parkinson’s disease. Caucasian subjects with Parkinson’s disease were included in the study. Baseline demographics, neurological deficit, medications taken, cognitive and neuropsychiatric status, and the polymorphisms in the brain-derived neurotrophic factor gene were assessed. Apathy was diagnosed in 53 (50.5%) patients. They were less educated (OR 0.76 CI 0.64–0.89; p = 0.001), more frequently depressed (OR 1.08 CI 1.01–1.15; p = 0.018), and less frequently treated with inhibitors of monoamine oxidase-B (MAOB-I) (OR 0.07 CI 0.01–0.69; p = 0.023). Although apathetic patients were more likely to carry the Met/Met genotype, differences in the brain-derived neurotrophic factor BDNF rs6265 polymorphism between apathetic and non-apathetic PD patients were not statistically significant in multivariate analysis. Some risk factors for apathy may be clinically modifiable. Further studies are needed to assess whether modeling modifiable apathy risk factors will affect the prevalence of this neuropsychiatric symptom in patients with Parkinson’s disease. Full article

Background: It is unclear whether assessments of motor proficiency are reliable for individuals with Down syndrome. The purpose of the study was to evaluate the test–retest reliability of the Bruininks–Oseretsky Test of Motor Proficiency-Short Form (BOT-2 SF) in youth with Down syndrome. Methods: Ten youth (ages 13.1–20.7 years) with Down syndrome completed the BOT-2 SF (14 items) plus a standing long jump on two separate occasions. Intraclass correlation coefficients (ICC), 95% confidence intervals (CIs), and standard error of measurement (SEM) were calculated to determine the test–retest reliability of the BOT-2 SF and the standing long jump. Results: The test–retest reliability of the BOT-2 SF overall scores and percentile rankings were considered excellent. The test–retest reliability of each of the subtests varied with classifications of poor (n = 5), fair to good (n = 6), and excellent (n = 4). Conclusion: Current evidence suggests that children with Down syndrome have reduced motor skills. However, there appears to be a lack of assessment tools that reliably evaluate the motor skills of this population. The results from this investigation suggest that the BOT-2-SF provides “excellent reliability” (≥0.75) to assess the motor skills in youth with Down syndrome. Full article

Background: Factors related to medication adherence in patients with schizophrenia have always been key to the treatment and rehabilitation of these patients. However, the treatment modes in different countries are not the same, and there is no research on the factors influencing medication adherence under different mental health service modes. Objectives: The purpose of this study was to explore medication adherence and its influencing factors in patients with schizophrenia in the Chinese institutional environment. Methods: We conducted a cross-sectional study of hospitalized persons living with schizophrenia from November 2018 to January 2019. A systematic sampling method was used to select 217 hospitalized persons living with schizophrenia. The Medication Adherence Rating Scale (MARS), Positive and Negative Syndrome Scale (PANSS), General Self-Efficacy Scale (GSES), Schizophrenia Quality of Life Scale (SQLS), and Scale of Social Skills for Psychiatric Inpatients (SSPI) were used to explore medication compliance and its influencing factors in the Chinese institutional environment. Results: The descriptive analysis and ANOVA showed that there were no significant differences in medication adherence when assessed by demographic characteristics such as sex, marital status, and education level (p > 0.05). A correlation analysis showed that there was no significant correlation between medication adherence and mental symptoms (p > 0.05) but that there was a positive correlation with self-efficacy, quality of life, and activities of daily living (p < 0.01). The linear regression analysis showed that self-efficacy, psychosocial factors, symptoms/side effects, and activities of daily living had significant effects on medication adherence (F = 30.210, p < 0.001). Conclusions: Our findings show that the self-efficacy, quality of life, and social function of patients with schizophrenia are important self-factors influencing medication adherence in the Chinese institutional environment. Full article

The potential consequences of the COVID-19 outbreak are multifarious and remain largely unknown. Deaths as a direct result of the condition are already in the millions, and the number of indirect deaths is likely to be even higher. Pre-existing historical inequalities are compounded by the virus, driving increased rates of infection and deaths amongst people who use drugs and alcohol, those belonging to racial-ethnic minority groups, poorer communities, LBGTQ+ populations, healthcare workers, and other members of the care economy; all of whom are already at increased risk of adverse mental health effects. In this paper we suggest that a central role of mental health practitioners is advocacy: both for people who use psychiatric services and for those who, due to the effects of the pandemic, are at an increased risk of needing to do so. Full article

A review on the mental health needs of adults with intellectual disability (ID) and autism spectrum disorder (ASD) published just over 10 years ago found a limited evidence base for pharmacological intervention in this group. The aim of this paper was therefore to review the evidence in the subsequent 10 years, with a focus on polypharmacy use in adults who have both ID and ASD. A critical literature review of key papers published from 2009 to 2021 was undertaken on adults with both ID and ASD and related to psychopharmacology, polypharmacy, antipsychotics, antidepressants, mood stabilisers and anxiolytics interventions in improving symptoms. After excluding articles for lack of relevance, a review with a focus on the use of polypharmacy was carried out on the retrieved results. Four papers were identified as relevant to adults with both ID and ASD. Three main themes were identified in the review, including the application of pharmacogenetics, the influence of national policy on prescribing practices and safety concerns in a population with multiple health comorbidities. The past decade has produced a small increase in the evidence base on psychopharmacology use in adults with ID and ASD. However, more evidence on the effectiveness and impact of long-term polypharmacy use is required. Full article

A worldwide vaccination programme is the chosen strategy against the COVID-19 pandemic. Vaccine hesitancy, however, forms a threat to achieving a high degree of vaccination. Healthcare workers (HCWs) are exposed to greater risks, in addition to HCWs who care for people with intellectual disabilities (ID). However, little is still known about these groups’ vaccine hesitancy. This review aims to provide insight into the intentions and attitudes of HCWs on COVID-19 vaccination, including those who care for people with ID. The search included both types and was conducted in nine databases. A total of 26 papers were identified concerning the vaccine intentions of 43,199 HCWs worldwide. The data were gathered both quantitively and qualitatively. The papers were analysed for all of the themes regarding vaccine intentions, which were: (1) percentages of vaccine willingness; (2) predictors of willingness; (3) attitudes of willingness and hesitancy; (4) sources of vaccination information; (5) contextual factors and changes in COVID-19 vaccine acceptance over time; and (6) future strategies for interventions. Concerns about vaccine safety, efficacy and short- and long-term side effects were the most prominent in HCWs and, therefore, should be addressed in future intervention strategies. Furthermore, interactive interventions are recommended to facilitate exchange, and accurate information should be accessible to target groups on social media platforms. Full article

We review the reasons for the greater male predominance in the diagnosis of autism spectrum disorder in the non-intellectual disabled population and compare it to autism diagnosed in intellectually disabled individuals. Accurate and timely diagnosis is important, as it reduces health inequalities. Females often present later for the diagnosis. The differences are in core features, such as in social reciprocal interaction through ‘camouflaging’ and restricted repetitive behaviours, that are less noticeable in females and are potentially explained by the biological differences (female protective effect theory) and/or differences in presentation between the two sexes (female autism phenotype theory). Females more often present with internalising co-occurring conditions than males. We review these theories, highlighting the key differences and the impact of a diagnosis on females. We review methods to potentially improve diagnosis in females along with current and future management strategies. Full article

In recent years, telemedicine has been developing very dynamically. The development of new technologies allows their use in the treatment of dermatological, cardiological, endocrine and other diseases. However, there are few reports on the use of digital technologies in the mental health care of people with intellectual disabilities. Intellectual disability is a disease that affects a large number of people. Patients suffering from intellectual disability encounter barriers that make it difficult for them to fully use telemedicine, however, these barriers can be overcome with appropriate support and adaptation. A review of the literature on telemedicine solutions in the care of people with intellectual disabilities indicates that the applications support the communication of these people with the doctor, enable simple behavioral interventions, stimulate cooperation in treatment, provide simple medical education as well as record medical data for the doctor. The authors present the potential risks related to the use of telemedicine solutions for people with intellectual disabilities as well as the project of creating a new, multi-module telemedicine system. Full article

Individuals with intellectual disability (ID) are more vulnerable to psychotic disorder and schizophrenia than the general population. However, psychotic symptoms have not been widely described in this population. Here, we deeply investigated the cases of two young women with ID and Down syndrome (DS) who developed a delusion of pregnancy, a rare condition defined as a fixed belief of being pregnant despite factual evidence to the contrary. The assessment included psychopathological and neuropsychological examination, as well as the evaluation of cognitive and adaptive functioning. In these cases, delusion manifested as a psychotic symptom of a cyclothymic disorder (case 1) or as an independent delusional disorder (case 2). However, some similarities emerged: both women exhibited good pre-morbid adaptive functioning and family history of psychiatric disorders; moreover, in both cases delusion emerged in association with an external trigger. Difficulties in verbally expressing one’s thoughts and beliefs were found, as well as poor abstract reasoning skills that may have affected the ability to deeply conceptualize the delusional idea itself. These findings may provide crucial insights into the clinical manifestation of psychosis in individuals with DS and underscore the importance of a routine psychological and neuropsychological follow-up to provide prompt and adequate intervention. Full article

The clinical manifestations of dementia are often rapidly matched to a specific clinical syndrome, but the underlying neuropathology is not always obvious. A genetic factor often plays an important role in early onset dementia, but there are cases in which the phenotype has a different genetic basis than is assumed. Two patients, at different times, presented to the Memory Clinic because of memory problems and difficulty in performing daily activities and work. Neither caregiver complained of marked behavioural or personality changes, except for apathy. Patients underwent standard dementia evaluation procedures including clinical symptoms, family history, neuroimaging, neuropsychological evaluation, and genetic analysis of selected genes. Based on specific clinical phenotypes and genetic analysis of selected genes, both patients were diagnosed with frontal variant of Alzheimer’s disease. The presence of a rare polymorphism in PSEN2 in both patients allowed the discovery that they belong to the same family. This fact reinforced the belief that there is a strong genetic factor responsible for causing dementia in the family. Next-generation sequencing based on a panel of 118 genes was performed to identify other potential genetic factors that may determine the background of the disease. A mutation in the GRN gene was identified, and the previous diagnosis was changed to frontotemporal dementia. The described cases show how important it is to combine all diagnostic tests available in the diagnostic centre, including new generation genetic tests, in order to establish/confirm the pathological background of clinical symptoms of dementia. If there is any doubt about the final diagnosis, persistent efforts should be made to verify the cause. Full article