Physical activity levels in older adults with intellectual disabilities are extremely low

This study measures physical activity levels in a representative population-based sample of older adults (aged ≥50 years) with intellectual disabilities. For this, the steps/day of all 1050 participants of the Healthy Ageing and Intellectual Disabilities study (HA-ID; a study conducted among three Dutch healthcare providers in 2009-2010), were measured with a pedometer. Largely due to physical limitations (n = 103), walking speed <3.2 km/h (n = 252), limited understanding or non-cooperation (n = 233), only 257 of the group were able to participate in valid measurements with pedometers. Of these 257 participants, only 16.7% (95% CI 12.2-21.3) complied with the guideline of 10,000 steps/day, 36.2% (95% CI 30.3-42.1) took 7500 steps/day or more, and 39% (95% CI 32.6-44.5) was sedentary (<5000 steps/day). Because the measured sample was the more functionally able part of the total sample, this result is likely to be a considerable overestimation of the actual physical activity levels in this population. This realistic study shows that physical activity levels are extremely low in adults aged 50 years and over with intellectual disabilities. Focus on lifetime promotion of physical activity in this specific, but rapidly growing population, is recommended.     

The predictive value of physical fitness for falls in older adults with intellectual disabilities

A high incidence of falls is seen in people with intellectual disabilities (ID), along with poor balance, strength, muscular endurance, and slow gait speed, which are well-established risk factors for falls in the general population. The aim of this study was to assess the predictive value of these physical fitness components for falls in 724 older adults with borderline to profound ID (≥50 years). Physical fitness was assessed at baseline and data on falls was collected at baseline and after three years. Gait speed was lowest in participants who fell three times or more at follow-up. Gait speed was the only physical fitness component that significantly predicted falls, but did not remain significant after correcting for confounders. Falls at baseline and not having Down syndrome were significant predictors for falls. Extremely low physical fitness levels of older adults with ID, possible strategies to compensate for these low levels, and the finding that falls did not increase with age may explain the limited predictive value of physical fitness found in this study.     

Feasibility and outcomes of the Berg Balance Scale in older adults with intellectual disabilities

High incidence of falls and increased risk of fall-related injuries are seen in individuals with intellectual disabilities (ID). The Berg Balance Scale (BBS) is a reliable instrument for balance assessment in the population of (older) adults with ID. The aims of this study were to assess the balance capacities of a large group of older adults with ID with the BBS and look for gender and age effects, as well as reasons for drop-out on separate items, and to identify feasible subtests for subgroups in which the complete BBS is not feasible. The balance capacities of 1050 older clients with borderline to profound ID of three Dutch care-provider services (mean age 61.6 [sd = 8.0]) were assessed with the BBS. The participants who completed all items of the BBS (n = 508) were the functionally more able part of the study sample. Results showed that even this functionally more able part had poor balance capacities, with a mean BBS score of 47.2, 95% CI [46.3, 48.0], similar to adults in the general population aged around 20 years older. Balance capacities decreased with increasing age and females had poorer balance capacities than males. Difficulties understanding the task and physical limitations were most often the reasons for drop-out. Feasible subtests were identified for the subgroups with very low cognitive levels and wheelchair users. Low balance capacities of older adults with ID show the need for regular screening and the urge for fall prevention programs for individuals with ID.     

Examination of adaptive behavior differences in adults with autism spectrum disorders and intellectual disability

Autism spectrum disorders (ASD) and intellectual disabilities (ID) are high prevalence developmental disabilities that co-occur at high rates. Furthermore, Axis I psychopathology is known to occur more frequently in individuals with ID than the general population. The problems are lifelong and can be major impediments to independent living. Despite this, little research with adults is available to determine the effects of these disabilities on specific adaptive skills. In this study, 337 adults were evaluated using the Vineland Adaptive Behavior Scale to assess the effects of these disabilities on looking at an ID, ID plus ASD, and ID and ASD plus Axis I psychopathology group. Adaptive skills were greatest for the ID group followed by the ID plus ASD, and ID and ASD plus psychopathology. Thus, the more handicapping conditions, the greater the skills deficits observed, particularly where psychopathology was concerned. As such, accurately identifying the causes of adaptive skill deficits will likely result in more precise and effective treatment.     

Metabolic profiles in adults with autism spectrum disorder and intellectual disabilities

IntroductionLow levels of blood cholesterol have been found in some children with autism spectrum disorders (ASD). Psychotropic medications, commonly used by people with ASD and people with intellectual disabilities (ID) are frequently associated with altered metabolic profiles.PurposeWe aimed to compare metabolic features of adults with ASD or ID with those of a community-based population.Subjects and methodsData on blood fasting glucose (FBG), lipid profile, liver enzyme profile, TSH, BMI, medications and diagnoses of 80 adults with ASD, 77 adults with ID and 828 control adults were drawn from medical charts/database. Candidates that used glucose or lipid lowering medications were not included.ResultsTotal-cholesterol levels of people with ASD and ID were significantly lower than those of the controls (168.3 ± 32.78, 168.2 ± 32.91, 185.4 ± 40.49 mg/dL, respectively, P < 0.001) but after adjusting for gender, age and BMI and using Bonferroni correction, the significance was lost. Compared to controls, ASD and ID had significantly lower FBG (by –14.45 ± 1.81, –14.58 ± 1.54 mg/dl, respectively; P < 0.001 for both) and liver enzymes, despite using psychotropic medications.Discussion and conclusionIn contrast to other psychiatric patients receiving similar medications, people with ASD and ID have unaltered lipid profiles and lower glucose and liver enzyme levels compared to a community-based population.     

Heart rate recovery after the 10-m incremental shuttle walking test in older adults with intellectual disabilities

Heart rate recovery (HRR) after exercise is an independent predictor for cardiovascular and all-cause mortality. To investigate the usefulness of HRR in cardiorespiratory exercise testing in older adults with intellectual disabilities (ID), the aims of this study were (a) to assess HRR in older adults with ID after the 10-m incremental shuttle walking test (ISWT) and (b) its association with personal characteristics (gender, age, distance walked on the ISWT, level of ID, genetic syndrome causing ID, autism, behavioral problems, and peak heart rate (HRpeak)). HRR was assessed after the 10-m incremental shuttle walking test in 300 older adults (>50 years) with borderline to profound ID. HRR was defined as the change from HRpeak during the ISWT to heart rate measured after 1, 2, 3, 4, and 5 min of passive recovery. The largest decrease in heart rate was in the first minute of recovery leveling off toward the fifth minute of recovery. An abnormal HHR (≤12 bpm) was seen in 36.1% of the participants with Down syndrome (DS) and in 30.7% of the participants with ID by other causes. After the fifth minute the heart rates of 69.4% of the participants with DS and of 61.4% of the participants with ID by other causes returned to resting levels. HRpeak and distance walked on the ISWT were positively related to all HRR measures. More severe ID was negatively related and having DS positively related to HRR after 3–5 min of recovery. The other characteristics were not significantly associated to HRR. HRR is a potentially useful outcome measure in cardiorespiratory fitness testing of older adults with ID with a direct, objective, and non-invasive measurement. Further research is needed to identify the relation between HRR and adverse health outcomes in this population.     

Characteristics of the least frail adults with intellectual disabilities: A positive biology perspective

The current study focuses on the characteristics of older people with intellectual disabilities with the lowest frailty levels. Frailty is an increased risk of adverse health outcomes and dependency. Older adults with intellectual disabilities (ID) show more signs of early frailty than the general population. Knowledge of the least frail group characteristics may provide insight into possibilities to prevent early frailty in older people with intellectual disabilities. This study was part of the Healthy Aging and Intellectual Disability study (HA-ID) which incorporated 1050 adults aged 50 years and over with all levels of ID. Frailty was measured with a frailty index. The least frail group was selected based on a frailty index score ≤0.10. Odds ratios were used to compare the occurrence of health deficits in the least frail group to the remaining group. The least frail group consisted of 65 participants, corresponding with 6.6% of the study population. The least frail group was significantly younger, had less severe levels of ID, and less often Down syndrome than the remaining group. The lack of mobility and physical fitness limitations, dependence, no signs of depression/dementia, and little medical problems characterized the least frail group. The percentage of 50+ adults with intellectual disabilities within the least frail group is very low compared to that in the general aging population (>43%). Interventions to prevent or delay frailty in this population are highly recommended and can focus on health characteristics of the least frail group.     

Norms and cut off scores for the autism spectrum disorders diagnosis for adults (ASD-DA) with intellectual disability

Establishing the cut-off scores for Autism Spectrum Disorder-Diagnostic (ASD-DA) scale for adults with intellectual disability (ID) and autism or PDD-NOS was the primary goal of this investigation. The aim of Study 1 was to determine if the ASD-DA was able to differentiate between adults with ID with and without an autism spectrum disorder, and to determine a total score cut-off for this purpose. The aim of Study 2 was to determine if the ASD-DA was able to differentiate between autism and PDD-NOS in this population. Sensitivity, specificity, and receiver operating characteristics (ROC) were computed for potential cut-off scores and were found to be acceptable. The implications of these data for diagnosing ASD in adults with ID are discussed.     

Characteristics of adults with autism spectrum disorder who use residential services and supports through adult developmental disability services in the United States

BackgroundMany children and adults with Autism Spectrum Disorder (ASD) need services and support across their lifespans. Currently many residential and community living supports are delivered through state intellectual and developmental disabilities (IDD) service systems.MethodA random sample of 11,947 individual users of adult IDD services from 25 states that included 1,459 individuals with an autism diagnosis was analyzed for this study looking at demographic characteristics and living arrangements. Comparisons were made between adults with and without ASD who receive services through the IDD service system.ResultsOverall, individuals with an ASD diagnosis were younger on average, had a higher percentage of males, and had higher percentages of the No Intellectual Disabilities (ID) and Severe ID categories compared to individuals without an ASD diagnosis. There was a significant association between the type of living arrangement and ASD status with a higher percentage of participants with ASD living in a family member’s home, but a lower percentage of people with ASD living in agency apartments, in their own home or an “other” living arrangement. However, with age, gender, and level of ID and challenging behavior taken into account, people with ASD had 29% higher odds of living in a family member’s home but 42% lower odds of living in their own home when compared to people with other developmental disabilities who received residential services through state IDD service systems.ConclusionsThere are key differences in access and utilization of residential services between people with ASD and people without ASD. While state developmental disabilities systems are serving individuals with ASD there are potential influences of state policies regarding ASD eligibility for various residential services. Implications for future research are discussed.     

Maternal stress predicted by characteristics of children with autism spectrum disorder and intellectual disability

To determine maternal stress and child variables predicting maternal stress, 104 mothers of children with autism spectrum disorder (ASD) and intellectual disability (ID) completed the Dutch version of the Parental Stress Index (PSI; De Brock, Vermulst, Gerris, & Abidin, 1992) every six months over a period of two years. The level of maternal stress remained stable over time. Child characteristics predicting maternal stress are behavioral inflexibility toward objects and initiating social interactions. However, these factors do not predict maternal stress when analyzed in combination with children's emotional and behavioral problems measured on the Child Behavior Checklist (CBCL; Achenbach & Rescorla, 2000). The subscales emotionally reactive behavior, withdrawn behavior and attention problems explain a third of the variance in maternal stress. This study revealed no relation between maternal stress and children's developmental age and IQ, receptive and expressive language, adaptive behavior, severity and subtype of ASD, behavioral flexibility toward the environment and persons, initiating and responding to joint attention, initiating and responding to behavioral requests, responding to social interactions and the other subscales of the CBCL. Findings are discussed in relation to the clinical and non-clinical norm groups of the PSI, the limitations of the study and clinical practice.     

Physical fitness is predictive for a decline in daily functioning in older adults with intellectual disabilities: Results of the HA-ID study

A high incidence of limitations in daily functioning is seen in older adults with intellectual disabilities (ID), along with poor physical fitness levels. The aim of this study was to assess the predictive value of physical fitness for daily functioning after 3 years, in 602 older adults with borderline to profound ID (≥50 years). At baseline, physical fitness levels and daily functioning (operationalized as basic activities of daily living [ADL] and mobility) were assessed. After 3 years, the measurements of daily functioning were repeated. At follow-up, 12.6% of the participants were completely independent in ADL and 48.5% had no mobility limitations. More than half of the participants (54.8%) declined in their ability to perform ADL and 37.5% declined in their mobility. Manual dexterity, visual reaction time, balance, comfortable and fast gait speed, muscular endurance, and cardiorespiratory fitness were significant predictors for a decline in ADL. For a decline in mobility, manual dexterity, balance, comfortable and fast walking speed, grip strength, muscular endurance, and cardiorespiratory fitness were all significant predictors. This proves the predictive validity of these physical fitness tests for daily functioning and stresses the importance of using physical fitness tests and implementing physical fitness enhancing programs in the care for older adults with ID.     

Interplay of circadian clock and melatonin pathway gene variants in adults with autism,intellectual disability and sleep problems

BackgroundPeople diagnosed with Autism Spectrum Disorder and intellectual disability (ID) usually experience sleep problems, where circadian clock and melatonin pathway genes may play a role.MethodOur aim was to analyze the influence of genetic variants PER1, ASMT, NPAS2, and MTNR1A by MassARRAY, in sleep-wake rhythms in a group of autistic adults with ID, cases (n = 83) and controls (n = 25). Sleep-wake rhythms were evaluated with ambulatory circadian monitoring.ResultsIn autistic cases (age 18−41years), PER1 rs6416892-GG and ASMT rs5989681-GG genotypes had a better sleep pattern according to sleep onset latency and awakenings; together with a worse sleep and/or temperature rhythm. Furthermore, diurnal temperature values were affected by NPAS2 rs1811399-CC genotype.ConclusionsNormal and abnormal sleep-wake rhythms could be related to circadian clock (PER1) and melatonin pathway (ASMT) gene variants. There is a need for further research to translate this data into clinical decisions or risk profiles.     

Objective assessment of sleep and sleep problems in older adults with intellectual disabilities

Little is known about sleep in older adults with intellectual disability (ID). Aim of this study was to investigate sleep and its associated factors, and to estimate the prevalence of sleep problems in this population. This study was part of the healthy aging and intellectual disabilities study. Sleep was assessed using the Actiwatch, a watch-like device that measures sleep and wakefulness based on movement activity. Participants (n = 551) wore the Actiwatch at least seven days and nights continuously. Variables of interest were time in bed (TIB), sleep onset latency, total sleep time, wake after sleep onset, sleep efficiency and get-up time latency. Multivariate analyses were used to investigate factors associated with these sleep parameters. Provisional definitions were drafted to estimate the prevalence of sleep problems. Mean TIB was 630 min. Longer TIB was independently associated with higher age, more severe level of ID, living at a central facility, wheelchair dependence, female gender and depressive symptoms (adjusted R² = .358, F-change = 8.302, p < .001). The prevalence of sleep problems was 23.9% settling problem, 63.1% night waking problem, 20.9% short sleep time, 9.3% early waking problem. 72% of the participants had at least one problem, 12.3% had three or more sleep problems. Older adults with ID lie in bed very long, and the prevalence of sleep problems is high. Further research should focus on causality of the relationships found in this study, and effects of sleep problems on health and well-being in this population.     

Effectiveness of low intensity behavioral treatment for children with autism spectrum disorder and intellectual disability

To determine the effectiveness of low intensity behavioral treatment (LIBT) supplementing regular treatment in young children with autism spectrum disorder (ASD) and intellectual disability (ID) standardized tests of cognition, adaptive behavior, interpersonal relations, play, language, characteristics of autism, emotional and behavioral problems, behavioral flexibility, early social communication, and maternal stress were administered in a treatment group (n = 20), receiving 4–10 h LIBT per week and a control group (n = 20) receiving treatment as usual. At baseline, no differences were found between groups (mean chronological age: 5.3 years; mean developmental age: 1.11 years) on several key variables, but after two years of intervention the treatment group outperformed the control group on IQ, developmental age, adaptive behavior, interpersonal relations, play and receptive language, and less autistic symptoms were seen in treatment group. Following intervention, no differences between groups were found on expressive language, behavioral flexibility and maternal stress. Progress in developmental age, adaptive behavior, interpersonal relations, play and receptive and expressive language was clinically and reliably significant for the majority of the LIBT group.     

Sleep, anxiety and challenging behaviour in children with intellectual disability and/or autism spectrum disorder

Children with an intellectual disability (ID) and/or autism spectrum disorder (ASD) are known to suffer from significantly more sleep problems, anxiety and challenging behaviour (CB) than typically developing children (TD), yet little is known about the relationship between these factors in the child ID/ASD population. The study aim was to examine these relationships. We hypothesised that there would be significant positive correlations between the three factors and that sleep problems and anxiety would predict a significant amount of the variance in levels of CB. Parental measures of sleep problems, anxiety and CB were completed by 187 parents of children with ID and/or ASD. Significant positive associations were found between the three factors. A hierarchical multiple regression showed that medication, sleep problems and anxiety accounted for 42% of the variance in CB, with a large effect size. These findings suggest that these relationships should be considered during clinical practice, particularly in the case of CB interventions where sleep problems and/or anxiety are also present.     

Intrusiveness of behavioral treatments for adults with intellectual disability

The current study examined treatment intrusiveness within behavior intervention programs developed for adults with intellectual disability (ID). Behavior analysts provided demographic information about themselves, their adult clients with ID, and their clients’ behavior intervention plans, and they completed an online version of the Treatment Intrusiveness Measure (Carter et al., 2009), an instrument that provides a Base Level Intrusiveness Score (BLIS; a score computed across five areas of categorization, such as, Health and Safety) and a Modified Level of Intrusiveness Score (MLIS), which assesses the presence or absence of intrusiveness-reducing practices. Among other findings, various statistical analyses revealed (a) a significant difference between BLIS and modified (BLIS minus MLIS) intrusiveness scores, (b) the practices within which most of the intrusiveness was concentrated within behavioral treatment programs, and (c) the least- and most-utilized intrusiveness-reducing practices. Implications are provided to assist professionals working with adults with ID who engage in challenging behavior and are supported through behavior intervention services.     

The making of a field: The development of comorbid psychopathology research for persons with intellectual disabilities and autism

Knowledge in the area of developmental disabilities has been expanding rapidly. One area that has received particular attention is the topic of related comorbid conditions. This phenomenon is not exclusive to the field of developmental disabilities. However, research with this population is of recent origin. The purpose of this paper is to review the origins of this field including some of the notable developments and potential future trends.     

Bone quality in older adults with intellectual disabilities

Although osteoporosis is a progressive bone disease leading to increased risk of fracture, it has rarely been investigated on a large scale in older people with intellectual disabilities (ID). In this study, 768 persons with ID (aged ≥ 50 years) were measured with quantitative ultrasound to determine the prevalence of low bone quality. The association of low bone quality with patient characteristics, mobility, physical activity, body mass index (BMI), prior fractures, anticonvulsant drug use, intake of calcium, and vitamin D3 levels was also investigated. The prevalence of low bone quality was 43.9%. Low bone quality was positively associated with female gender, age, more severe level of ID, mobility impairment, and anticonvulsant drug use, and negatively with BMI. In clinical practice, people with ID who are at risk for low bone quality should periodically be screened for osteoporosis and be given advice about nutritional supplements and appropriate lifestyle.