The Effect of Progressive Resistance Exercise Training on Cardiovascular Risk Factors in People with Intellectual Disabilities: A Study Protocol.

Progressive resistance exercise training (PRET) reduces cardiovascular risk factors (CVRF) in the general population. It is unknown if PRET also reduces these risk factors in adults with intellectual disabilities (ID). The aim is to present the protocol of an intervention study that investigates the effect of PRET on CVRF in adults with ID. We will use a repeated time series design with one study group. Adults with mild-to-moderate ID and at least two CVRF are eligible (Netherlands Trial Register, NL8382). During a 12-week baseline period, measurements take place at a 6-week interval. After this, the PRET programme starts for 24 weeks, after which all measurements will be repeated. We will use hierarchical regression models, adjusted for sport activity and medication use, to estimate the effect of PRET. After the intervention, the participants will be followed-up for 12 weeks. We will evaluate factors for successful implementation of exercise in daily life. Primary outcomes are: hypertension, obesity, hypercholesterolemia, diabetes, metabolic syndrome. Secondary outcomes are: physical fitness, sarcopenia, physical activity, activities of daily living, falls, challenging behaviour. If our results show that the PRET programme is effective, it may be a promising non-pharmacological intervention to reduce CVRF in adults with ID.

Healthy Ageing and Intellectual Disability study: summary of findings and the protocol for the 10-year follow-up study.

INTRODUCTION: The Healthy Ageing and Intellectual Disability (HA-ID) study is a prospective multicentre cohort study in the Netherlands that started in 2008, including 1050 older adults (aged ≥50) with intellectual disabilities (ID). The study is designed to learn more about the health and health risks of this group as they age. Compared with the amount of research in the general population, epidemiological research into the health of older adults with ID is still in its infancy. Longitudinal data about the health of this vulnerable and relatively unhealthy group are needed so that policy and care can be prioritised and for guiding clinical decision making about screening, prevention and treatment to improve healthy ageing. METHODS AND ANALYSIS: This article presents a summary of the previous findings of the HA-ID study and describes the design of the 10-year follow-up in which a wide range of health data will be collected within five research themes: (1) cardiovascular disease; (2) physical activity, fitness and musculoskeletal disorders; (3) psychological problems and psychiatric disorders; (4) nutrition and nutritional state; and (5) frailty. ETHICS AND DISSEMINATION: Ethical approval for the 10-year follow-up measurements of the HA-ID study has been obtained from the Medical Ethics Review Committee of the Erasmus MC, University Medical Centre Rotterdam (MEC-2019-0562). TRIAL REGISTRATION NUMBER: This cohort study is registered in the Dutch Trial Register (NTR number NL8564) and has been conducted according to the principles of the Declaration of Helsinki.

Antipsychotics withdrawal in adults with intellectual disability and challenging behaviour: study protocol for a multicentre double-blind placebo-controlled randomised trial.

BACKGROUND: In people with intellectual disability (ID) and challenging behaviour, antipsychotics (AP) are often used off-label and for a long period. Despite a lack of evidence for efficacy for challenging behaviour and concerns about common and clinically relevant side effects, complete withdrawal often fails. We postulate three possible hypotheses for withdrawal failure: 1. Influence of subjective interpretation of behavioural symptoms by caregivers and family; 2. Beneficial effects from AP treatment on undiagnosed psychiatric illness, through improvement in sleep or a direct effect on behaviour; and 3. Misinterpretation of withdrawal symptoms as a recurrence of challenging behaviour. METHODS: To investigate our hypotheses, we have designed a multicentre double-blind, placebo-controlled randomised trial in which AP (pipamperone or risperidone) are withdrawn. In the withdrawal group, the AP dose is reduced by 25% every 4 weeks and in the control group the dose remains unaltered. Behaviour, sleep, psychiatric disorders, withdrawal symptoms and side effects will be measured and compared between the two groups. If drop-out from the protocol is similar in both groups (non-inferiority), the first hypothesis will be supported. If drop-out is higher in the withdrawal group and an increase is seen in psychiatric disorders, sleep problems and/or behavioural problems compared to the control group, this suggests effectiveness of AP, and indications for AP use should be reconsidered. If drop-out is higher in the withdrawal group and withdrawal symptoms and side effects are more common in the withdrawal group compared to the control group, this supports the hypothesis that withdrawal symptoms contribute to withdrawal failure. DISCUSSION: In order to develop AP withdrawal guidelines for people with ID, we need to understand why withdrawal of AP is not successful in the majority of people with ID and challenging behaviour. With this study, we will bridge the gap between the lack of available evidence on AP use and withdrawal on the one hand and the international policy drive to reduce prescription of AP in people with ID and challenging behaviour on the other hand. TRIAL REGISTRATION: This trial is registered in the Netherlands Trial Register (NTR 7232) on October 6, 2018 ( www.trialregister.nl ).

Are we still in the dark? A systematic review on personal daily light exposure, sleep-wake rhythm, and mood in healthy adults from the general population.

Insufficient light exposure is assumed to be related to a wide array of health problems, though few studies focus on the role of whole-day light exposure in the habitual setting in the development of these health problems. The current review aims to describe the association between personal light exposure in the habitual setting and sleep-wake rhythm and mood in healthy adults from the general population. Five databases (Embase, Medline Epub, Web of Science, PsycINFO, and Google Scholar) were searched in June 2019. The inclusion criteria included: assessment directly of light exposure on the participants for at least one full day; reporting on both individual personal light exposure and outcomes. The quality of the papers was assessed using the Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies of the National Heart, Lung and Blood Institute. The current review followed the PRISMA guidelines. In total, 8140 papers were identified in the database search. Twenty-five papers were eventually included in this review. All included studies were cross-sectional, and individual light exposure was usually measured with a wrist-worn device. Five studies received a "good" quality rating, 16 received a "fair" rating, and the remaining 4 a "poor" quality rating. The overall quality of the included studies was considered low because of the lack of intervention studies and the fact that light exposure was measured on the wrist. Given the low quality of the included studies, the current review can only provide a first exploration on the association between light exposure and sleep-wake rhythm and mood in healthy adults from the general population. Limited evidence is presented for a positive relationship between the amount and timing of light exposure on the one hand and rest-activity rhythm and some estimates of sleep architecture on the other. The evidence on an association between light exposure and circadian phase, sleep estimates, sleep quality, and mood is conflicting. Data from intervention studies are needed to gain insight into the causal mechanism of the relationship between light exposure and sleep-wake rhythm and mood.

Determining Frailty in People With Intellectual Disabilities in the COVID-19 Pandemic.

Background: Across the world, frailty is part of the guidelines that are being developed in the COVID-19 pandemic for triaging in crisis situations. The Clinical Frailty Scale (CFS) evaluates the ability to perform daily tasks to identify frail individuals, potentially excluding those from intensive care (IC) treatment. Individuals with intellectual disabilities (ID) experience varying degrees of dependence, distinct from age-related physical deterioration. Using the CFS for triage in crisis situations could potentially unjustifiably exclude individuals with ID from IC treatment. Our objective was to compare the classification of individuals with ID into different frailty categories based on the CFS and the well-studied ID-frailty index and to determine suitability of CFS for evaluation of frailty in individuals with ID during the COVID-19 pandemic. Methods: This retrospective analysis of the observational healthy aging and intellectual disabilities (HA-ID) study included 982 individuals with ID of ≥50 years, who were classified according to the CFS and the ID-frailty index. Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classified as moderately frail (CFS score 6), but 92% of this group is not moderately frail according to the ID-frailty index. Furthermore, 199 (20.3%) would be classified as at least severely frail (CFS score 7-9), but 74.9% of this group is not severely frail according to the ID-frailty index. Overall, 730 out of 982 (74.9%) individuals would be incorrectly classified by the CFS as too frail to have a good probability of survival. The ID-frailty index predicts mortality better than the CFS in individuals with ID. Conclusions: Our results show the CFS is not suitable to evaluate frailty in individuals with ID, with potential dramatic consequences for triage and decision-making during the COVID-19 pandemic. We strongly recommend using the ID-frailty index when assessing probability of survival for individuals with ID.

Comparison of sleep-wake rhythms in elderly persons with intellectual disabilities and the general population.

BACKGROUND: Sleep problems are common in people with intellectual disabilities (ID), but the knowledge on the natural course of sleep-wake rhythms and sleep problems in elderly persons with ID is limited. In the current study, objectively measured sleep-wake rhythms and the prevalence and severity of sleep problems of elderly persons with ID was compared to that of healthy elderly persons from a large representative sample from the general population. METHODS: Actigraphy data of 501 elderly persons with ID (age 62.02 ± 8.02 years, 48% female) from the Healthy Ageing and Intellectual Disabilities study was compared to the data of 1734 elderly persons from the general population (age 62.24 ± 9.34 years, 53% female) from the Rotterdam Study. Main outcome variables were Interdaily stability (IS) and Intradaily variablitiy (IV), total sleep time (TST), Waking after sleep onset (WASO), Short sleep (TST<6 h), Night waking (WASO >90 min). RESULTS: Elderly persons with ID had less stable sleep wake rhythms than elderly persons from the general population (IS = 0.70 ± 0.17, vs 0.80 ± 0.10 z = -8.00). Their sleep-wake rhythm was also more fragmented (IV = 0.56 ± 0.26 vs 0.42 ± 0.13 respectively, z = 8.00). Elderly persons with ID slept on average 60.09 min longer than elderly persons from the general population, and lay awake 48.28 min longer after sleep onset. Short sleep in elderly persons with ID was less prevalent (20.7% vs 30.2%) but more severe (TST in Short sleep; 5.13 ± 0.80 h vs 5.39 ± 0.50 h, z = -2.76) then in elderly persons from the general population. Night waking was more prevalent (63.0% vs 17.7%) and more severe in elderly persons with ID (WASO in Night waking; 150.39 ± 54.72 min vs 111.60 ± 17.95 min, z = 7.06). CONCLUSION: The differences in sleep-wake rhythms, prevalence and severity of sleep problems between elderly persons with and without ID are marked and possibly explained by medical, psychiatric conditions and lifestyle in elderly persons with ID. Better understanding of sleep in elderly with ID is needed to improve the quality of sleep in this population and to diminish health problems related to a disruption of sleep.

Is fatness or fitness key for survival in older adults with intellectual disabilities?

BACKGROUND: Overweight/obesity and poor physical fitness are two prevalent lifestyle-related problems in older adults with intellectual disabilities, which each require a different approach. To improve healthy ageing, we assessed whether fatness or fitness is more important for survival in older adults with intellectual disabilities. METHODS: In the HA-ID study, we measured obesity and fitness of 874 older adults with intellectual disabilities (61.4 ± 7.8 years). All-cause mortality was assessed over a 5-year follow-up period. RESULTS: Fitness, but not obesity, was significantly related to survival (HR range of 0.17-0.22). People who were unfit were 3.58 (95% CI = 1.72-7.46) to 4.59 (95% CI = 1.97-10.68) times more likely to die within the follow-up period than people who were fit, regardless of obesity. CONCLUSION: This was the first study to show that being fit is more important for survival than fatness in older adults with intellectual disabilities. The emphasis should, therefore, shift from weight reduction to improving physical fitness.

Small Steps in Fitness, Major Leaps in Health for Adults With Intellectual Disabilities.

Physical fitness is positively related to health outcomes like morbidity and all-cause mortality, with minimally required cutoff values to generate those health benefits. Individuals with intellectual disability (ID) exhibit very low fitness levels well below those cutoff values. Our novel hypothesis is that even among very unfit, older adults with ID, small changes in fitness translate to major changes in health.

Adding meaning to physical fitness test results in individuals with intellectual disabilities.

Purpose: Evaluating physical fitness in individuals with intellectual disabilities (ID) is challenging, and a multitude of different versions of tests exist. However, psychometric properties of these tests are mostly unknown, and both researchers as clinical practitioners struggle with selecting appropriate tests for individuals with ID. We aim to present a selection of field tests with satisfactory feasibility, reliability, and validity, and of which reference data are available.Methods: Tests were selected based on (1) literature review on psychometric properties, (2) expert meetings with physiotherapists and movement experts, (3) studies on population specific psychometric properties, and (3) availability of reference data. Tests were selected if they had demonstrated sufficient feasibility, reliability, validity, and possibilities for interpretation of results.Results: We present a basic set of physical fitness tests, the ID-fitscan, to be used in (older) adults with mild to moderate ID and some walking ability. The ID-fitscan includes tests for body composition (BMI, waist circumference), muscular strength (grip strength), muscular endurance (30 second and five times chair stand), and balance (static balance stances, comfortable gait speed).Conclusions: The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness in adults with ID. Recommendations for future research include expansion of research into psychometric properties of more fitness tests and combining physical fitness data on this population in larger datasets. Implications for rehabilitationIndividuals with intellectual disabilities have low physical fitness levels, and a high risk for unnecessary functional decline and unhealthy aging.Physical fitness testing could help improve, adapt and evaluate exercise interventions, but is challenging in this population.This paper proposes a selection of tests (ID-fitscan) with sufficient feasibility, reliability, and validity in this population, and provides reference values to aid interpretation of physical fitness test outcomes in individuals with intellectual disabilities.The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness, and thereby allowing for a better interpretation of results by using the same tests, and an increasing knowledge of the physical fitness levels of this population.

The feasibility of vigorous resistance exercise training in adults with intellectual disabilities with cardiovascular disease risk factors.

BACKGROUND: The cardiovascular disease (CVD) risk is high in adults with intellectual disabilities. This CVD risk can potentially be decreased with a resistance training (RT) programme at vigorous intensity, following previous research on successful High-Intensity Training programmes. Our aim was to explore the feasibility of a vigorous RT-programme for adults with intellectual disabilities with CVD risk factors. METHOD: Twenty-four adults with intellectual disabilities with at least one CVD risk factor participated in a 24-week RT-programme. The training intensity was increased from novice (50%1RM) to vigorous (75%-80%1RM). Feasibility was based on the achieved training intensity at the end of the RT-programme. RESULTS: Nineteen participants finished the RT-programme. Feasibility was good as 58% (11 out of 19) of the participants worked out at vigorous intensity at the end of the programme. CONCLUSIONS: It is feasible for the majority of adults with intellectual disabilities with CVD risk factors to exercise at vigorous intensity.

Physical fitness is predictive for 5-year survival in older adults with intellectual disabilities.

BACKGROUND: The very low physical fitness levels of people with intellectual disabilities (ID) may influence their life expectancy. Therefore, we investigated the predictive value of physical fitness for survival in older adults with intellectual disabilities. METHOD: In the Healthy Ageing and Intellectual Disabilities (HA-ID) study,the physical fitness levels of 900 older adults (≥50 years; 61.5 ± 8.1 years) were measured at baseline. All-cause mortality was collected over a 5-year follow-up period. Cox proportional hazard models were used to determine the association between each physical fitness test and survival, adjusted for age, sex, level of ID, and Down syndrome. RESULTS: The physical fitness components that were independently predictive for survival were manual dexterity (HR = 0.96 [0.94-0.98]), visual reaction time (HR = 1.57 [1.28-1.94]), balance (HR = 0.97 [0.95-0.99]), comfortable gait speed (HR = 0.65 [0.54-0.78]), fast gait speed (HR = 0.81 [0.72-0.91]), grip strength (HR = 0.97 [0.94-0.99]) and cardiorespiratory fitness (HR = 0.997 [0.995-0.999]), with a better physical fitness showing a lower mortality risk. CONCLUSION: We showed for the first time that physical fitness was independently associated with survival in older adults with intellectual disabilities. Improving and maintaining physical fitness must become an essential part of care and support for this population.

Effectiveness of medication reviews in identifying and reducing medication-related problems among people with intellectual disabilities: A systematic review.

BACKGROUND: Polypharmacy is common in people with intellectual disabilities. Using multiple medication may lead to unintended medication-related problems (MRPs). Medication review may serve as a tool to reduce MRPs. This systematic review assessed the scientific evidence for the effectiveness of medication reviews in identifying and reducing MRPs in people with intellectual disabilities. METHOD: Literature databases were searched up to August 2017. Studies were selected that included the effect of medication reviews on identifying and/or reducing MRPs in people with intellectual disabilities with no restriction of type of medication, age and level of intellectual disabilities. RESULTS: The eight studies that fulfilled the inclusion criteria report that systematic medication reviews appear to assist in the identification and reduction of MRPs. CONCLUSION: There is a lack of studies about the effect of medication reviews on identification and reduction of MRPs, especially health outcomes for people with intellectual disabilities. Further studies with long-term follow-up are needed.

The dual task effect on gait in adults with intellectual disabilities: is it predictive for falls?

PURPOSE: Falling is an important health issue in adults with intellectual disabilities. Their cognitive and motor limitations may result in difficulties with dual tasking (walking and talking), which increases fall risk. Therefore, we assessed the dual task effect on gait in adults with intellectual disabilities, if this dual task effect is predictive for falls, and if this is more predictive than regular walking. METHOD: Gait characteristics of 31 adults with intellectual disabilities without Down syndrome were assessed with the GAITRite at comfortable speed and during dual tasking (conversation). Falls were collected over a three-month follow-up period. RESULTS: During dual tasking, participants walked slower, with a lower cadence, increased stride time, and shorter stride lengths. They spend less time in swing and single support phase than at comfortable speed. Also swing and single support time became more variable. The dual task effect and walking at comfortable speed were not predictive for falls, although medium effect sizes were found. CONCLUSIONS: Dual tasking affects gait in adults with intellectual disabilities. This is an important finding for safe community participation, and must be considered while interacting with adults with intellectual disabilities during daily activities. Possible negative consequences of distractors should be kept in mind. More research is needed to better understand the predictive value of gait for falls. Implications for Rehabilitation Having a conversation while walking affects the gait pattern of adults with intellectual disabilities, possible negative consequences of distractors should be kept in mind. The dual task effect on the width of the gait pattern and stride time variability had the largest effect sizes with future falls, this potential relationship should be kept in mind in clinical practice. The dual task effect on gait is important to consider with regard to safe community participation. Future studies are needed to better understand the predictive value of gait for falls, and for cutoff points to be used in clinical practice.

A resistance exercise set for a total body workout for adults with intellectual disabilities, a pilot study.

BACKGROUND: Resistance training has beneficial effects on fitness levels, cardiovascular disease risk, risk of sarcopenia and on performing activities of daily living. The focus of this study is to design a total body resistance exercise set for adults with intellectual disabilities (RESID) with minimal equipment required and to test its feasibility. METHOD: The RESID was selected in an expert meeting, and its feasibility was determined in a cross-sectional pilot study. The feasibility was determined with completion rate, correct execution of exercises and the participant's experience. RESULTS: The expert group (n = 7) selected seven exercises for the RESID. The participants (N = 11) performed the RESID twice during regular sports classes. Completion rate and correctness were excellent for all exercises. The participants did not experience any major problems with the RESID. CONCLUSIONS: The RESID is feasible for use in different training settings. A physiotherapist or fitness instructor is required to supervise the training sessions.

Correlates of Sedentary Behaviour in Adults with Intellectual Disabilities-A Systematic Review.

Individuals with intellectual disabilities (ID) are at high risk for high levels of sedentary behaviour. To inform the development of programmes to reduce sedentary behaviour, insight into the correlates is needed. Therefore, the aim of this study is to review the evidence on correlates of sedentary behaviour in adults with ID. We performed a systematic literature search in Ovid Medline, Ovid Embase, Web of Science and Google Scholar up to 19 January 2018, resulting in nine included studies that were published from 2011 to 2018. Correlates were categorized according to the ecological model. Studies predominantly focused on individual level correlates. Of those correlates studied in more than one study, having epilepsy was associated with less sedentary behaviour and inconsistent results were found for sex, genetic syndromes, weight status, physical health, mobility, level of ID, and mental health. Of the few interpersonal and environmental factors studied, only living arrangements were studied in more than one study, with inconsistent results. To date, we have limited and inconclusive evidence about correlates of sedentary behaviour in adults with ID. Only when future studies unravel correlates and determinants, across all domains of the ecological model, will the potential opportunities to improve health by reducing sedentary behaviour come within reach.

Gait Characteristics of Adults With Intellectual Disability.

Gait is a relevant and complex aspect of motor functioning. Disturbances are related to negative health outcomes. Gait characteristics of 31 adults with intellectual disability (ID) without Down syndrome (DS) (42.77±16.70 years) were investigated, and associations with age, sex, body mass index (BMI), and level of ID were assessed. Sex and BMI were significantly associated with some of the gait parameters, while age and level of ID were not. Gait characteristics of adults with ID seem to be comparable to those of the general population of older adults (average 20 years older), except that adults with ID seem to spend less time in stance and double support phase and walk more variable and with a broader base of support.

Causes of Mortality in Older People With Intellectual Disability: Results From the HA-ID Study.

We aim to provide insight into the cause-specific mortality of older adults with intellectual disability (ID), with and without Down syndrome (DS), and compare this to the general population. Immediate and primary cause of death were collected through medical files of 1,050 older adults with ID, 5 years after the start of the Healthy Ageing and Intellectual Disabilities (HA-ID) study. During the follow-up period, 207 (19.7%) participants died, of whom 54 (26.1%) had DS. Respiratory failure was the most common immediate cause of death (43.4%), followed by dehydration/malnutrition (20.8%), and cardiovascular diseases (9.4%). In adults with DS, the most common cause was respiratory disease (73.3%), infectious and bacterial diseases (4.4%), and diseases of the digestive system (4.4%). Diseases of the respiratory system also formed the largest group of primary causes of death (32.1%; 80.4% was due to pneumonia), followed by neoplasms (17.6%), and diseases of the circulatory system (8.2%). In adults with DS, the main primary cause was also respiratory diseases (51.1%), followed by dementia (22.2%).

Multimorbidity and Polypharmacy Are Independently Associated With Mortality in Older People With Intellectual Disabilities: A 5-Year Follow-Up From the HA-ID Study.

We studied the association between multimorbidity, polypharmacy, and mortality in 1,050 older adults (50+) with intellectual disability (ID). Multimorbidity (presence of ≥ 4 chronic health conditions) and polypharmacy (presence ≥ 5 chronic medication prescriptions) were collected at baseline. Multimorbidity included a wide range of disorders, including hearing impairment, thyroid dysfunction, autism, and cancer. Mortality data were collected during a 5-year follow-up period. Cox proportional hazards models were used to determine the independent association between multimorbidity and polypharmacy with survival. Models were adjusted for age, sex, level of ID, and the presence of Down syndrome. We observed that people classified as having multimorbidity or polypharmacy at baseline were 2.60 (95% CI = 1.86-3.66) and 2.32 (95% CI = 1.70-3.16) times more likely to decease during the follow-up period, respectively, independent of age, sex, level of ID, and the presence of Down syndrome. Although slightly attenuated, we found similar hazard ratios if the model for multimorbidity was adjusted for polypharmacy and vice versa. We showed for the first time that multimorbidity and polypharmacy are strong predictors for mortality in people with ID. Awareness and screening of these conditions is important to start existing treatments as soon as possible. Future research is required to develop interventions for older people with ID, aiming to reduce the incidence of polypharmacy and multimorbidity.

Definitions, measurement and prevalence of sedentary behaviour in adults with intellectual disabilities - A systematic review.

Supporting positive change in lifestyle behaviours is a priority in tackling the health inequalities experienced by adults with intellectual disabilities. In this systematic review, we examine the evidence on the definition, measurement and epidemiology of sedentary behaviour of adults with intellectual disabilities. A systematic literature search of PUBMED, EMBASE, MEDLINE and Google Scholar was performed to identify studies published from 1990 up to October 2015. Nineteen papers met the criteria for inclusion in the systematic review. Many researchers do not distinguish between insufficient physical activity and sedentary behaviour. None of the studies reported the reliability and validity of the methods used to measure sedentary behaviour. Sedentary time, assessed objectively, ranged from 522 to 643min/day: higher than in adults without intellectual disabilities. This first-ever review of sedentary behaviour and intellectual disabilities found that at present the evidence base is weak. Studies calibrating accelerometer data with criterion measures for sedentary behaviour are needed to determine specific cut-off points to measure sedentary behaviour in adults with intellectual disabilities. Researchers should also examine the reliability and validity of using proxy-report questionnaires to measure sedentary behaviour in this group. A better understanding of sedentary behaviour will inform the design of novel interventions to change lifestyle behaviours of adults with intellectual disabilities.

[Older adults with intellectual disabilities markedly decline in daily functioning over a 3­year period: Results of the HA-ID study]. / Ouderen met een verstandelijke beperking verliezen veel zelfredzaamheid gedurende drie jaar: resultaten van de Gezond Ouder studie (GOUD).

The responsibilities for the care of a significant portion of the population with an intellectual disability (ID) were recently transferred from the government to the municipalities. It is therefore important that policymakers and care professionals know how much support this population needs in their daily life. Therefore, this study focuses on the decline in daily functioning of older adults with ID (≥50 years, n = 703) over 3 years, and if daily functioning is a predictor for all-cause mortality. Daily functioning was operationalized as basic and instrumental activities of daily living (ADL and IADL) and mobility. Fifty-five percent of the total group declined in ADL, 42 % in IADL, and 38 % in mobility. Thirty-nine percent of the participants with mild ID declined in ADL, 55 % in IADL, and 27 % in mobility. Poor daily functioning and mobility was a risk factor for all-cause mortality. This epidemiological study shows a clear decline in the daily functioning of older adults with intellectual disabilities over a 3-year follow-up period. Care providers should be aware of this decline and focus on maintaining as much independence as possible.