Prevalence of hypertension in adults with intellectual disability in the Netherlands

Background   Literature on the prevalence of hypertension in people with intellectual disability (ID) is mostly based on file studies or on measurements limited to the age group below 50 years. We measured and calculated the prevalence of hypertension in adults with ID and studied the distribution of hypertension in relation to age, gender, diagnosis of Down's syndrome and level of ID.
Methods   In an observational cross-sectional study, standardized blood pressure measurements were obtained from 258 randomly selected adult clients of three Dutch care providers for people with ID. Hypertension was defined as a mean systolic blood pressure above 140 mm Hg on repeated measurements.
Results   The overall prevalence rate of hypertension was 17.4% (95% CI 12.28–22.46). This was comparable to the prevalence in the general Dutch population. No accurate blood pressure measurement could be performed in 28.4% of people with severe and profound ID owing to repetitive physical activity or resistance. Hypertension was significantly related to older age and absence of Down's syndrome; no correlation with gender or level of ID could be shown.
Recommendation   The risk factor hypertension should be detected and treated in the same manner as in the general population following national guidelines.     

Prevalence, aetiology and comorbidity of severe and profound intellectual disability in Finland

Background The aim of the present study was to describe the aetiology, associated impairments and prevalence of severe and profound intellectual disability (SPID) in Finland. Methods The number of people with SPID in the catchment area of the Pääjärvi Centre for the Mentally Retarded, Lammi, Finland, (total population = 341 227) was calculated from the client register of this centre. Aetiological factors and background diagnoses for all subjects with SPID were analysed retrospectively. Results The number of people with SPID was 461, giving a prevalence of 0.13%. The aetiology of their SPID was genetic or congenital in 235 (50.9%) individuals, acquired in 89 (19.3%), genetic and/or acquired in 84 (18.3%), and unknown in 53 (11.5%) subjects. Out of the 53 individuals with an SPID of unknown origin, 48 (90.6%) had an associated impairment; the remaining five were the only members of the study group showing normal growth, and having neither dysmorphic features, physical abnormalities nor family members with ID. Out of the 461 subjects, 422 (91.5%) had between one and six associated impairments (total = 954), and the remaining 39 (8.5%) had SPID as their only impairment. Uncomplicated SPID was mainly of genetic or congenital origin, whereas all subjects with acquired encephalopathy had multiple disabilities. Speech defects, epilepsy and cerebral palsy were the most common associated impairments. Conclusions Severe and profound ID almost always occurs concomitantly with other severe neurological or psychiatric impairments. The proportion of people with SPID described in the present study is similar to that found in Finland in 1966. The aetiology of SPID in the vast majority of cases is biopathological.     

A descriptive investigation of dysphagia in adults with intellectual disabilities

Background   Dysphagia has rarely been investigated in adults with intellectual disabilities (ID) despite being a serious condition affecting health and quality of life.
Method   This study collected information about 101 adults with ID, living in community settings, referred for an assessment of their eating and drinking. Ninety-nine people were classified as having dysphagia from clinical and videofluoroscopic assessments. This information was used to give an indication of the prevalence of dysphagia in adults with ID and identify the co-occurrence of physiological and anatomical indicators and associated negative health conditions.
Results   Details of the characteristics and conditions associated with dysphagia are provided. These include cerebral palsy, increased physical disability and cognitive impairment. A tentative indication of the current prevalence of dysphagia was found (8.15%).
Conclusion   Findings indicate that dysphagia is a significant issue for people with ID warranting further investigation. Practice implications detailed include increasing awareness of 'at risk' groups, changes in dysphagia with ageing, medication use and illness, and how findings can inform assessment and training.     

Social exclusion and people with intellectual disabilities: a rural–urban comparison

Background Research suggests that social exclusion is a problem both for people with intellectual disabilities (ID) and for people living in rural areas. This may give rise to a double disadvantage for people with ID living in rural areas. Conversely, aspects of rural life such as community spirit and social support may protect against social exclusion in this population. This study was designed to compare a number of measures of social exclusion in adults with ID living in rural and urban areas, with the aim of identifying whether a double disadvantage exists. Method Adults with ID were recruited from a rural and an urban area in Scotland. Participants participated in a face‐to‐face interview and their medical notes were accessed. Social exclusion was investigated using a number of measures comprising: daytime opportunities and physical access to community facilities (using part of the British Institute of Learning Disabilities questionnaire), recent contact with others and the quality of personal relationships (using a modified Interview Measure of Social Relationships questionnaire) and area deprivation by postcode (using the Scottish Index of Multiple Deprivation). The data were analysed using a series of binary logistic regression models that adjusted for variables including age, gender, level of ID, mental illhealth and common physical co‐morbidities. Results A representative sample of adults with ID from rural (n = 39) and urban (n = 633) areas participated. Participants from rural areas were significantly more likely to have any regular daytime opportunity [odds ratio (OR) = 10.8, 95% CI = 2.3–51.5] including employment (OR = 22.1, 95% CI = 5.7–85.5) and attending resource centres (OR = 6.7, 95% CI = 2.6–17.2) than were participants from urban areas. They were also more likely to have been on holiday (OR = 17.8, 95% CI = 4.9–60.1); however, were less likely to use community facilities on a regular basis. Participants from urban and rural areas had a similar number of contacts with other people in a wide range of situations, but the quality of relationships may have been less close in rural areas. Finally, participants lived in significantly less deprived areas when in rural compared with urban areas (Mann–Whitney U = 7826, Z = ?3.675, P ≤ 0.001). Conclusions These results suggest that adults with ID living in rural areas have better opportunities and live in less deprived areas than adults with ID living in urban areas. However, they may not hold such positive or close relationships, and this may be important when considering the subjective experience of social exclusion.     

Diagnostic grouping among adults with intellectual disabilities and autistic spectrum disorders in staffed housing

Background There is little evidence to guide the commissioning of residential provision for adults with autistic spectrum disorder (ASD) in the UK. We aim to explore the degree and impact of diagnostic congregation among adults with intellectual disabilities (ID) and ASD living in staffed housing. Methods One hundred and fifty-seven adults with intellectual disabilities from a sample of 424 in staffed housing were assessed as having the triad of impairments characteristic of ASD. They lived in 88 houses: 26 were non-congregate (40% or fewer residents had the triad) and 50 congregate (60% or more had the triad); 12 with intermediate groupings were eliminated. Non-congregate and congregate groups were compared on age, gender, adaptive and challenging behaviour, house size, staff per resident and various measures of quality of care and quality of outcome. Comparisons were repeated for Adaptive Behavior Scale (ABS)-matched, congregate and non-congregate subsamples. Results Non-congregate settings were larger, had lower staff per resident and more individualised social milieus. Groups were similar in age and gender but the non-congregate group had non-significantly higher ABS scores. The non-congregate group did more social, community and household activities. After matching for ABS, these outcome differences ceased to be significant. Non-congregate settings were significantly larger and had significantly more organised working methods. Conclusions The findings are consistent with other research that finds few advantages to diagnostic grouping.     

Prevalence of parents with intellectual disability in Australia

Background Parenting by people with intellectual disability is attracting increasing attention, and policymakers and service providers require empirical evidence to develop sound policy and service responses. The purpose of the study was to identify prevalence and demographic data on parents with ID in Australia compared with parents with other disabilities and the population of parents without disability.

Method The Survey of Disability, Ageing and Carers, 2009, was identified as the most suitable survey, and design-weighted analysis was performed.

Results An estimated 0.41% of Australian parents had intellectual disability, equating to 17,000 parents with ID. Parents with ID were more likely to have only 1 child and to reside outside a capital city compared with parents without disability.

Conclusions These findings provide benchmark data for monitoring, over time, the prevalence of parents with ID and point to policy and service responses for parents with only 1 child and for those in outer urban, regional, and rural areas of Australia.     

Prevalence of people with intellectual disability in the Netherlands

Background Since the 1990s, people with intellectual disability (ID) in the Netherlands have been moving from institutions to supported accommodation in the community. The Government is in need of recent data on the numbers of these people, to ensure adequate care provision and funding. This paper reports on the prevalence of people with ID in the Netherlands. The research question was: what is the lowest and highest estimation of prevalence of people with ID in the Netherlands? Methods Two extrapolation methods were used, each consisting of a number of stages, using general practice databases and ID care services records. Results The prevalence of people with ID in the Netherlands was 0.7% (111 750 persons). Other assumptions yielded 0.54–0.64%. Arguments for the two extrapolation methods and the lowest and highest estimation of prevalence are discussed. Conclusions Compared with 1988, there has been a slight decrease in the prevalence of people with ID in the Netherlands, even though we included all age groups and even people with ID of who were not included in ID care services records. By using general practitioner databases it was possible to identify these not registered people with ID.     

Adult persons with intellectual disabilities on the island of Ireland

Background Information on the numbers of adult persons (aged 20 years and over) with intellectual disability (ID) is rarely collated at a national level. This is an impediment to service planning especially for a changing population. Methods A database of all persons in receipt of ID services has been operating in the Republic of Ireland since 1995. In Northern Ireland, regional databases can be used to provide similar information. Results A total of 25 134 persons were known to services in 2002; an overall prevalence for the island of 6.34 per 1000. However this rate varied for different age groupings and across the two parts of the island. General population characteristics, as well as service factors, appear to account for this. Significantly more people lived with family carers in Northern Ireland. By 2021, it was estimated that the population would increase by over 20% with around one‐third of persons aged over 50 years. Conclusions These data illustrate the variations that exist in the numbers of adult persons with ID known to services across and within regions of a country. Hence caution must be exercised in extrapolating prevalence rates derived in one area to another. The availability of comparative national data highlights issues around the equitable funding and delivery of services.     

Quality of life of adults with intellectual disabilities who live with families in Taiwan

Background Little research has been conducted about the quality of life (QOL) of people with intellectual disabilities (ID) in Taiwan, particularly their subjective QOL. This study examined the personal perceptions of these individuals as measured on internationally recognized core QOL domains and indicators. Methods A census interview survey was conducted in Hsin‐Chu City in Taiwan; 233 adults aged over 16 years with mild ID and living with their families participated in the study. Data were collected using the Cross‐Cultural QOL Indicators (CCQOLI) together with socio‐demographic data that included ‘activities of daily living’ and ‘instrumental activities of daily living’ (IADL). The CCQOLI were based on the three most commonly reported indicators of each of the eight QOL domains: emotional well‐being, interpersonal relations, material well‐being, personal development, physical well‐being, self‐determination, social inclusion and rights. Each indicator has two sets of questions related to the indicator's ‘importance’ and ‘use’. These are answered by the respondent using a 4‐point Likert scale. Results The importance and use of the QOL indicators were evaluated positively by the respondents. The adults' individual characteristics, namely IADL and educational level, were significant predictors for the ‘importance’ while the adults' perceptions of ‘use’ for overall QOL were significantly affected by his/her socio‐economic data, that is, residence location and father's educational level. Conclusions The present study addressed the issue of self‐reported QOL in people with ID in Taiwanese society, becoming a possible benchmark for similar measurements carried out by disability movements there. These results contribute to current advocacy efforts towards creating a supportive environment for people with ID.