Article

Development of a frailty index for older people with intellectual disabilities: Results from the HA-ID study

March 2013
Research in Developmental Disabilities 34(5):1541-1555

DOI:10.1016/j.ridd.2013.01.029

Source
PubMed

Authors:

Josje Schoufour

Amsterdam University of Applied Sciences/Centre for Applied Research on Education

Arnold Mitnitski

Dalhousie University

Kenneth Rockwood

Dalhousie University

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Background: Although there is no strict definition of frailty, it is generally accepted as a state of high vulnerability for adverse health outcomes at older age. Associations between frailty and mortality, dependence, and hospitalization have been shown. We measured the frailty level of older people with intellectual disabilities (ID). Furthermore variation in gender, age, and level of ID were identified. Results were compared to a frailty study in the general European population. Methods: This research elaborates on a large cross-sectional study: Healthy Ageing with Intellectual Disability (HA-ID). Nine hundred-eighty-two men and women (≥ 50 yr) with ID were included. Based on the collected data, we developed a frailty index with 51 health-related deficits, and calculated a frailty index score between 0 and 1 for each individual. Deficits included physical, social and psychological problems. Results: The mean frailty index score was 0.27 (standard deviation .13). Frailty was positively correlated with age (r=0.297, p<.001). More severe ID was associated with higher frailty scores (β=0.440, p<001). The upper limit of the FI was 0.69, which was consistent for all age categories. Conclusion: As people with ID are getting older, the question whether additional years are spent in good health becomes salient. Here, people with ID over age 50 had frailty scores similar to most elderly people over 75 y. Future research is needed to confirm if frail elderly people with ID have an increased risk of adverse health outcomes.

Prevalence of frailty syndrome and its predictors in the population of people with intellectual disability compared to the general population: a systematic review

Article

Jul 2022

The aim of the systematic review was to evaluate the prevalence of the frailty syndrome (FS) and to identify its predictors in people with intellectual (ID) and developmental (DD) disabilities. It was assumed that in people with ID in adulthood period and early elderly period (20-60 years old) the ageing process (lower mobility in joints, frequent falls, the incidence of the coexist diseases and disability) occurs earlier and more frequent than in general population. The methodology of this systematic review was planned according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. A search of electronic databases (PubMed, EBSCO, MEDLINE) was conducted to identify all studies on the incidence of the FS in people with intellectual disabilities from 2010 to 2022 based on the physical and functional status. In contrary to the general population, the assessment of the prevalence of FS among people with ID and DD was performed mostly with multivariant model. Age, gender, coexist diseases, mobility impairment in everyday life activities and Down syndrome were identified as the most frequent predictors of FS among the studied populations. In conclusion, the prevalence of FS among people with ID was diverse (9-27%) and included the following variables: coexisting diseases, coupled disability, intelligence quotient, everyday life activities, dwelling place. Moreover FS was found to occur significantly earlier (from 10 to 25 years) than in general population. Future studies should include the assessment of FS based on both phenotype and multivariant models.

PREVALENCE OF FRAILTY SYNDROME AND ITS PREDICTORS IN THE POPULATION OF PEOPLE WITH INTELLECTUAL DISABILITY COMPARED TO THE GENERAL POPULATION: A SYSTEMATIC REVIEW

Article

Jul 2022

Determining Frailty in People With Intellectual Disabilities in the COVID‐19 Pandemic

Article

Full-text available

Jan 2021

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.

Applying a General Measure of Frailty to Assess the Aging Related Needs of Adults with Intellectual and Developmental Disabilities: Frailty and Aging

Article

Jun 2017

Adults with intellectual and developmental disabilities often experience premature aging and high levels of frailty. Frailty characterizes health complexities and identifies adults with increased risks for adverse outcomes. This paper compared the prevalence of frailty amongst adults (aged 18–99 years) with and without intellectual and developmental disabilities. Frailty was measured using the Frailty Marker, based on the Adjusted Clinical Groups-Predicative Model, and was compared between a cohort of 51,138 adults with intellectual and developmental disabilities and a random sample of 3,272,080 adults without intellectual developmental disabilities. Approximately 9% of persons with intellectual and developmental disabilities were frail, compared to only 3% of persons without intellectual and developmental disabilities. Women, older adults, and adults with mental illness or addiction(s), were more likely to be frail. Adults with intellectual and developmental disabilities are increasingly vulnerable as they age. However, to appropriately characterize frailty in this population, measures should be more inclusive of health characteristics and fluctuations that are related to frailty. Future research should investigate alternative measures of frailty for persons with intellectual and developmental disabilities, including measures derived from standardized health assessments, to meet the needs of the aging population. © 2016 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc.

Neuromuscular control of masticatory muscles in people with intellectual disability, middle-aged adults and older adults

Article

Sep 2023
J INTELL DISABIL RES

Background Motor control issues are common for people with intellectual disabilities (PWID), resulting in difficulties with basic activities of daily living, including eating. Mastication, which is crucial for digestion and overall health, is poorly understood in this population. PWID shows frailty similar to older people, highlighting the importance of comparing masticatory motor control with older adults. This study compared the neuromuscular control of the masticatory muscles in middle-aged, PWID and older adults. Methods A cross-sectional analytical design was used. During the mastication task of a carrot piece (2 cm in diameter and weighing 0.5 g), surface electromyography was used to record muscle activity patterns from the right and left masseter and temporalis muscles. Principal component analysis (PCA) was used to assess neuromuscular control. A z-score normalisation of the first component’s variance from PCA to identify those individuals with altered neuromuscular control. A mixed ANOVA was performed to assess the interaction between principal components, groups and body composition. Results Thirty PWIDs (aged 35–55 years), middle-aged adults and 32 older adults were recruited. PWID and older adults showed decreased neuromuscular control of the masticatory muscles compared to middle-aged control adults (P < 0.05). PWID had the highest proportion of individuals with altered neuromuscular control of the masticatory muscle (53%) compared to older adults (19%) and middle-aged adults (0%) (P < 0.05). Conclusions Our results indicate that PWID and older adults have reduced neuromuscular control compared to middle-aged adults. Notably, a significant proportion of the PWID showed altered masticatory muscle control compared to older adults. Further research is needed to explore the potential benefits of masticatory muscle training for PWID.

Tackling increased risks in older adults with intellectual disability and epilepsy: Data from a national multicentre cohort study

Article

Full-text available

May 2022
SEIZURE-EUR J EPILEP

Purpose : People with intellectual disabilities (ID) suffer multimorbidity, polypharmacy and excess mortality at a younger age than general population. Those with ID and epilepsy are at higher risk of worse clinical outcomes than their peers without epilepsy. In the ID population the health profile of those aged ≥40 years can be compared to those aged over 65 in the general population. To date there is limited data available to identify clinical characteristics and risk factors in older adults (≥40 years) with ID and epilepsy. Methods : The Epilepsy in ID National Audit (Epi-IDNA) identified 904 patients with ID and epilepsy from 10 sites in England and Wales. This subsequent analysis of the Epi-IDNA cohort compared the 405 adults over 40 years with 499 adults ≥18 years aged under 40 years. Comparison was made between clinical characteristics and established risk factors using the Sudden Unexpected Death in Epilepsy (SUDEP) and Seizure Safety Checklist. Results : The older adults’ cohort had significantly higher levels of co-morbid physical health conditions, mental health conditions, anti-seizure medications (median 5), and antipsychotics compared to the younger cohort. The older group were significantly less likely to be diagnosed with a co-morbid neurodevelopmental disorder, and to have an epilepsy care plan. Conclusion : This is the largest study to date focused on adults with ID and epilepsy over 40 years. The ≥40 years cohort compared to the younger group has higher levels of clinical risk factors associated with multi-morbidity, potential iatrogenic harm and premature mortality with worse clinical oversight mechanisms.

Community-Based Support and Social Services and Their Association with Frailty Factors in Older People with Intellectual Disability and Affective and Anxiety Disorders: A Swedish National Population-Based Register Study

Article

Full-text available

Jul 2022
COMMUNITY MENT HLT J

Affective and anxiety diagnoses are common in older people with intellectual disability (ID). The aim was to describe support and social services for older people with ID and affective and/or anxiety diagnoses, also to investigate in this study group the association between support and social services and frailty factors in terms of specialist healthcare utilisation, multimorbidity, polypharmacy, level of ID and behavioural impairment. Data was selected from four population-based Swedish national registries, on 871 identified persons with affective and/or anxiety diagnoses and ID. Multivariate regression analysis was used to investigate associations between frailty factors during 2002–2012 and social services in 2012. People with multimorbidity who frequently utilised specialist healthcare were less likely to utilise residential arrangements. Those with polypharmacy were more likely utilise residential arrangements, and receive personal contact. People with moderate, severe/profound levels of ID were more likely to utilise residential arrangements and to pursue daily activities.

Design of a frailty index among community living middle-aged and older people: The Rotterdam study

Article

Dec 2016

Objectives: To design a frailty index (FI) and evaluate three methods to handle missing data. Furthermore, we evaluated its construct (i.e., skewed distribution, correlation with age and sub-maximum score) and criterion validity (based on mortality risk). Study design: We included 11,539 participants (45± years) from a population-based cohort in the Netherlands. Frailty was measured with a FI, which we constructed based on the accumulation of 45 health-related variables, related to mood, cognition, functional status, diseases and conditions, biomarkers, and nutritional status. A total FI-score was calculated by averaging the scores of the deficits, resulting in a score between 0 and 1, with higher scores indicating increasing frailty. Mean imputation, single- and multiple imputation were applied. Main outcome measure: Mortality data were obtained by notification from the municipal administration. Median follow-up time was 9.5 years, during which 3902 (34%) participants died. Results: The median FI for the full population was 0.16 (IQR=0.11-0.23). The distribution of the FI was slightly right-skewed, the absolute maximum score was 0.78 and there was a strong correlation with age (Pearson correlation=0.52;95%CI=0.51-0.54). The adjusted HR per unit increase in FI-score on mortality was 1.05 (95%CI=1.05-1.06). Multiple imputation seemed to provide more robust results than mean imputation. Conclusion: Based on our results we advise to the use of at least 30 deficits from different health domains to construct a FI if data are not imputed. Future research should use the continuous nature of the FI to monitor trajectories in frailty and find preventive strategies.

Ouderen met een verstandelijke beperking verliezen veel zelfredzaamheid gedurende drie jaar: resultaten van de Gezond Ouder studie (GOUD)

Article

Nov 2016

Door hervormingen van het zorgstelsel is een deel van de mensen met een verstandelijke beperking (VB) nu aangewezen op de Wet Maatschappelijke Ondersteuning (de gemeente). Kennis over hun zelfredzaamheid, en de afname hiervan tijdens het ouder worden is belangrijk om de zorgverlening voor deze groep goed in te richten. Daarom richt deze studie zich op de achteruitgang in zelfredzaamheid en de relatie met overlijden bij ouderen met een VB (≥50 jaar; n = 703). Zelfredzaamheid werd gedefinieerd als basale en instrumentele activiteiten van het dagelijks leven (ADL en IADL) en mobiliteit (zelfstandig kunnen lopen of niet). Van de deelnemers ging 55 % achteruit in hun ADL, 42 % in IADL, en 38 % in mobiliteit. Het risico op achteruitgang bleek groter bij een hogere leeftijd en een ernstigere VB, maar ook deelnemers met een lichte VB gingen 39 % achteruit in ADL, 55 % in IADL en 27 % in mobiliteit. Een slechtere zelfredzaamheid en mobiliteit waren een sterke voorspeller voor overlijden. Deze grootschalige studie laat een duidelijke achteruitgang zien in de zelfredzaamheid van ouderen met een VB in 3 jaar tijd. Partijen verantwoordelijk voor de zorg voor mensen met een VB moeten bedacht zijn op achteruitgang en zoveel mogelijk inzetten op behoud van de zelfredzaamheid.

Person-centered Planning for Pre-frail or Frail Adults with Intellectual and Developmental Disabilities

Article

Full-text available

Aug 2021

Shahin Shooshtari

Trends in Frailty Prevalence Among Older Adults in Korea: A Nationwide Study From 2008 to 2020

Article

Full-text available

Jul 2023

Background: We aimed to evaluate the nationwide trend of the prevalence of frailty in older adults in Korea from 2008 to 2020 to inform future geriatric healthcare policies. Methods: The study used data of individuals aged 65 years and older from the Korea National Health and Nutrition Examination Survey, a nationwide repeated cross-sectional survey. Frailty was defined using frailty index, classified as non-frail (frailty index ≤ 0.15), pre-frail (0.15 < frailty index ≤ 0.25), or frail (frailty index > 0.25). Results: The study included 17,784 individuals, with the mean age of 72.4 and mean frailty index of 0.2. The prevalence of frailty in older adults in South Korea decreased significantly from 2008 (41.1%) to 2020 (23.1%). The decrease in the frailty index was observed in all age groups (all P < 0.05). As components of frailty index, we found that certain comorbidities, such as dyslipidemia, diabetes mellitus, and cardiovascular disease, have increased over time, while factors such as chewing difficulty, activity limitation, and smoking, have decreased. Conclusion: The prevalence of frailty in older adults in South Korea has decreased significantly during the study period. Historical improvements in healthcare access and preventive measures may have contributed to this trend.

Long-term social restrictions and lack of work activities during the COVID-19 pandemic: impact on the daily lives of people with intellectual disabilities

Article

Full-text available

Nov 2022
DISABIL REHABIL

Purpose Lockdowns due to the Covid-19 pandemic may have had a disproportionate impact on the daily lives of people with intellectual disabilities. Many of them had to deal with limited social contacts for an extended period. This study explores in depth how people with intellectual disabilities in the Netherlands experienced their daily lives, in particular due to lack of access to regular work activities. Materials and methods Eight participants with intellectual disabilities were interviewed. Interpretative Phenomenological Analysis (IPA) was employed in conducting and analysing interviews. Results and conclusions Analysis yielded three overarching themes that are conceptually linked. Participants experienced a prolonged lack of social connections that resulted in experiences of social isolation and feelings of loneliness. This led to different kinds of struggles: either internal struggles involving negative thoughts or depressive feelings, or a perceived threat to their autonomous position in society. Meanwhile participants had to sustain their sense of self-worth in the absence of work activities. The findings emphasise the importance of social opportunities through the access to work activities for people with intellectual disabilities. Interventions are suggested to help reverse the increased social inequalities and enhance rehabilitation via work activities for people with intellectual disabilities. • IMPLICATIONS FOR REHABLITATION • More awareness may be raised among authorities, employers and the general public about the significant value people with intellectual disabilities attribute to meaningful social connections, in particular through work activities. • Also, more awareness may be raised about the potential adverse effects of the loss of work activities and social connections on the quality of life of people with intellectual disabilities. • Providing social support to others may help people with intellectual disabilities to construct social valued roles, either in or outside the work situation. • Professionals and employers can support people with intellectual disabilities to find opportunities to provide social support to others. • It is important to invest in sustainable and innovative post-pandemic community participation initiatives and particularly in accessible post-pandemic employment support, for example by organising paid in-company training placements. • It is essential that professionals support people with intellectual disabilities to enhance their sources of resilience and coping strategies, that may have diminished as a result of the pandemic.

Light up: an intervention study of the effect of environmental dynamic lighting on sleep–wake rhythm, mood and behaviour in older adults with intellectual disabilities

Article

Full-text available

Aug 2022

Background: Evidence-based interventions to improve the sleep-wake rhythm, mood and behaviour in older adults with intellectual disabilities (ID) are limited. Increasing light exposure has been shown to be effective in improving the sleep-wake rhythm, mood, and behaviour in other populations. The current study investigates the effect of installing environmental dynamic lighting in common living rooms of care facilities on sleep-wake rhythm, mood, and behaviour in older adults with ID. Methods: A non-randomised, non-concurrent, multiple baseline study was performed from October 2017 to May 2018. Fifty-four participants [mean (SD) age of 63.42 (8.6) years, 65% female] in six care facilities were included. All participants had three baseline measurements (Weeks 1, 5 and 9). Dynamic lighting was installed in Week 10, after which three intervention measurements took place (Weeks 12, 17 and 24). Sleep characteristics and the sleep-wake rhythm were assessed using actigraphy (GENEActiv). Mood was measured with the Anxiety, Depression and Mood Scale (ADAMS) and behaviour with the Aberrant Behaviour Checklist (ABC). Results: Mixed-effect regression analysis showed a worsening of the primary outcome interdaily stability (P = 0.001). This could be attributed to one care facility, whereas interdaily stability did not change in the other care facilities (P = 0.74). Dynamic lighting led to earlier mid-sleep (P = 0.003) and sleep onset (P < .0001) and improved mood as indicated by lower scores on the ADAMS depression (-0.64 SD, P < 0.001) and social avoidance (-0.47 SD, P = 0.004) subscales. The prevalence of screening above cut-off for depression decreased from 23 to 9.8% (OR = .16, P = 0.003). For behaviour, a decrease was seen in hyperactivity (-0.43 SD, P < 0.001), lethargy (-0.35 SD, P = 0.008) and irritability (-0.33 SD, P < .001) as measured with the ABC. No adverse effects were reported. Conclusion: Installing dynamic lighting in common living areas for older adults with ID improved the mood and behaviour of the residents up to 14 weeks after placement. Integrated dynamic lighting is a promising, undemanding and potentially effective addition to improve mood and behaviour in care organisations for people with ID, but does not seem to do so by improving sleep or sleep-wake rhythms.

Psychological frailty in older adults: a systematic scoping review

Preprint

Full-text available

Aug 2022

Background Psychological frailty, along with physical and cognitive frailty, is linked to an increased risk of negative health outcomes among older adults. However, the definition of psychological frailty has received limited attention. A thorough comprehension of the concept of psychological frailty is therefore required. Objectives To review existing definitions of psychological frailty and to provide a comprehensive overview of the concept of psychological frailty and associated measurements. Methods This review followed the PRISMA guidelines for scoping reviews and the JBI Manual for Evidence Synthesis. Eligibility criteria were developed based on the Participants-Concept-Context (PCC) framework. We searched CINAHL, Scopus, PubMed, Web of Science, and PsycINFO databases and other sources for relevant studies published between January 2003 to March 2022. Results The final scoping review included 58 studies. 40 (69%) of these studies provided a definition of psychological frailty and 7 studies provided a novel definition. The other 11 studies focused on components of defining psychological frailty. To better characterize psychological frailty, we propose four groups of components, including mood, cognitive, mental health, and fatigue-associated problems. We identified 28 measuring tools across studies and the Tilburg frailty indicator was the most frequently used (46.6% of studies). Conclusions Psychological frailty is a complex concept that lacks a consensus definition. It should include both psychological features and physical frailty. Depression and other psychological problems are commonly used to define psychological frailty. This scoping review outlines future research directions to refine the concept of psychological frailty.

Effects of resistance training interventions on muscular strength in adults with intellectual disability: a systematic review and meta-analysis

Article

Apr 2021

Purpose Muscular strength is critical for adults with an intellectual disability (ID) to promote their mobility, cardiovascular capacity, and performance of daily living/recreational/vocational activities. This article reports the results of the first systematic review and meta-analysis of peer-reviewed clinical trials that evaluated the effects of resistance training (RT) interventions on muscular strength in adults with ID. Methods The protocol was registered with PROSPERO (CRD42020184905). The review focuses on clinical trials that recorded quantitative measures of maximum muscular strength. Eleven electronic databases were searched from their earliest available record up to May 2020. After screening 1996 search records, 11 clinical trials were reviewed. Results The RT interventions, while heterogeneous, had an overall significant (p ≤ 0.05) effect on muscular strength in adults with ID, ages 25–58 years. The findings were more significant and less heterogeneous for non-combined RT interventions than for interventions that combined RT exercises with aerobic or balance exercises. The TESTEX overall score was 8.3 ± 3.6. Conclusions RT interventions (particularly when not combined with other exercises) are effective in promoting muscular strength in adults with ID. The limited number of studies and the low study quality scores indicate a potential risk of bias, which limits the interpretation of the findings and warrants further investigation. • IMPLICATIONS FOR REHABILITATION • Muscular strength is critical for adults with an intellectual disability (ID) to promote their mobility, cardiovascular capacity, and performance of daily living/recreational/vocational activities. • RT interventions are an effective means of improving muscular strength in adults with ID, especially when not combined with other forms of exercise. • Testing and assessment protocols used in RT programs should be individualized for adults with ID to accommodate their characteristics and should be implemented under conditions similar to those experienced during the training regimen. • It is important to implement familiarization sessions before carrying out muscular strength testing or initiating an RT program to ensure safety, accuracy, and effectiveness of the program for adults with ID.

Medication burden and frailty in older adults with intellectual disability: An observational cross‐sectional study

Article

Mar 2020

Purpose: Recently, efforts have been made to quantify frailty among older adults with intellectual disability (ID). Medication exposure is associated with frailty among older adults without ID. However, there is little research on this association among older adults with ID. The aim of this study was to examine specifically in people with ID the association between frailty and medication exposure, including anticholinergic and sedative medication exposure. Methods: Data were drawn from Wave 2 (2013/2014) of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA), a nationally representative study of older adults with ID in Ireland. A modified version of Fried's frailty phenotype was constructed. Drug burden measures were polypharmacy, Drug Burden Index (DBI), Anticholinergic Cognitive Burden (ACB) and Sedative Load Model. Multinomial logistic regression was used to calculate odds ratios (ORs) and identify associations between frailty and drug burden. Results: This study included 570 participants with ID. Excessive polypharmacy (use of ≥10 medications) was significantly associated with being pre-frail (P = .017; OR = 2.56; 95% confidence interval [CI] 1.19-5.50) and frail (P < .001; OR 7.13; 95% CI 2.81-18.12), but DBI, ACB or Sedative Load score were not significantly associated with frailty status (P > .05). Conclusions: This is the first study to examine frailty and its association with medication use including anticholinergic and sedative medication burden among older adults with ID. Further research is required to investigate frailty as measured by other frailty models in relation to medication burden in older adults with ID.

Comorbidity Burden in Adults With Autism Spectrum Disorders and Intellectual Disabilities—A Report From the EFAAR (Frailty Assessment in Ageing Adults With Autism Spectrum and Intellectual Disabilities) Study

Article

Full-text available

Sep 2019

Background: Autism spectrum disorder (ASD) is an early-onset and lifelong neurodevelopmental condition frequently associated with intellectual disability (ID). Although emerging studies suggest that ASD is associated with premature ageing and various medical comorbidities, as described for ID, data are scarce. Objectives: To determine the comorbidity burden and its association with distinct clinical presentation in terms of ASD severity, adaptive skills, level of autonomy, and drug exposure in a well-phenotyped sample of individuals with ASD-ID—the EFAAR (Frailty Assessment in Ageing Adults with Autism Spectrum and Intellectual Disabilities) cohort. Methods: A total of 63 adults with ASD-ID, with a mean age of 42.9 ± 15.1 years, were recruited from 2015 to 2017 from nine specialized institutions. They underwent detailed clinical examinations, including screening for comorbidities, ASD severity [Childhood Autism Rating Scale (CARS)], adaptive functioning [Vineland Adaptive Behavior Scale II (VABS-II)], autonomy [activities of daily living (ADLs)], and drug use [polypharmacy and the Drug Burden Index (DBI)]. The comorbidity burden was evaluated using the Cumulative Illness Rating Scale (CIRS-G) and its sub-scores [the severity index (CIRS-SI) and severe comorbidity (CIRS-SC)]. Results: We found a large range of comorbidities, including gastrointestinal disorders and mental and neurological diseases. Overall, 25% of our ASD-ID sample had chronic kidney disease with the associated increased cardiovascular risk factors. The comorbidity burden was high (mean CIRS-G total score of 10.6 ± 4.8), comparable with that observed among patients older than those in our population hospitalized in geriatric departments. Furthermore, the comorbidity burden positively correlated with age, decreased autonomy, and polypharmacy. Conclusion: The severity of the comorbidity burden associated with premature ageing in adults with ASD and ID highlight their crucial need of personalized medical care.

Supporting adults with intellectual and developmental disabilities to cope and thrive through transitions to later-life phases

Article

Apr 2019

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

Article

Full-text available

Feb 2019

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 rehabilitation • Individuals 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.

Future of Aging Research

Chapter

Sep 2018

The world population is aging, and this phenomenon is expected to continue for the next decades. The demographic modifications are substantially altering the socio-economic structure of our societies and pose serious burdens to the sustainability of healthcare systems worldwide. In order to guarantee that models of care are responsive to the novel needs and transformations, it is necessary to invest in new research paradigms that are respectful of the complexity of the aging process. This implies shifting from disease-centered paradigms towards holistic evaluations of the individual, probably focused on the measurement of objective functions. In this chapter, we provide an overview of current issues affecting research on aging and possible solutions that researchers of tomorrow may valorize.

Frailty indexes in perioperative and critical care: A systematic review

Article

Aug 2018
ARCH GERONTOL GERIAT

Background/objectives: Frail patients are increasingly presenting for both perioperative and intensive care, highlighting the need for simple, valid and scaleable frailty measurement. Frailty indexes comprehensively assess a range of deficits in health, and can incorporate routinely collected data. The purpose of this systematic review was to evaluate the effect of frailty indexes on surgical and intensive care risk stratification and patient outcomes (mortality, complications, length of stay, and discharge location). Methods: A prospectively registered systematic review was performed. MEDLINE, EMBASE, and CINAHL were searched to identify studies enrolling adult surgical or intensive care patients which used a frailty index. Included studies were those published subsequent to 1990, of any study design, which utilised a frailty index consisting of ≥30 health deficits. Primary outcome was mortality; secondary outcomes were complications, length of stay (LOS) and discharge location. Study and frailty index quality were critically appraised by three independent reviewers, with findings narratively described. Results: 2026 articles were screened, from which nine prospective and four retrospective cohort studies (enrolling 2539 patients) were included. Frailty prevalence ranged between 19-62%; frailty indexes identified patients at risk of increased death [mortality rates ranging between 1.9-73.1%; reported odds ratios (ORs) for death ranging between 1.76-3.09 for frail vs. non-frail patients], surgical complications (ORs = 1.67-4.4), increased LOS, and discharge to residential care (ORs = 1.9-3.64). The term "frailty index" was found to be applied to a number of alternative measurement scales. Conclusion: Frail patients are at significantly increased risk in critical illness and the perioperative period. Better standardisation of frailty indexes is recommended.

Development of a Medicare Health Outcomes Survey Deficit-Accumulation Frailty Index and Its Application to Older Patients With Newly Diagnosed Multiple Myeloma

Article

Jul 2018

Purpose: To develop a frailty index using the Rockwood Accumulation of Deficits approach for the Medicare Health Outcomes Survey (MHOS) and apply it in a subset of older patients with newly diagnosed multiple myeloma. Methods: Data from 2,692,361 patients without cancer, > 66 years of age, in SEER-MHOS linked databases between 1998 and 2009 were analyzed. A frailty index was constructed, resulting in a 25-item scale; cutoff values were created for individuals classified as frail. This frailty index was then applied to 305 patients with newly diagnosed myeloma in the database to predict overall survival. Results: In the derivation cohort of patients without cancer, the median age was 74 years and the mean frailty index was 0.23 (standard deviation, 0.17). Among patients without cancer, each 10% increase in frailty index (approximately three to four more deficits) was associated with a 40% increased risk for death (adjusted hazard ratio, 1.397; 95% CI, 1.396 to 1.399; P < .001). In the cohort of patients with newly diagnosed myeloma, the median age was 76 years an d the mean frailty index was 0.28 (standard deviation, 0.17). Each 10% increase in frailty index was associated with a 16% increased risk for death (adjusted hazard ratio, 1.159; 95% CI, 1.080 to 1.244; P < .001). Fifty-three percent of patients with multiple myeloma were considered frail. The estimated median overall survival of patients considered frail was 26.8 months, compared with 43.7 months (P = .015) for those who were not. Conclusion: The MHOS-based frailty index was prognostic for patients with multiple myeloma in predicting overall survival.

Development and applicability of a tool for identification of people with intellectual disabilities in need of palliative care (PALLI)

Article

Jul 2018

Background Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability. Method We used a five‐stage mixed‐methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5–6 months. Results The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health. Conclusions PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care.

An evaluation of the effectiveness of annual health checks and quality of health care for adults with intellectual disability: an observational study using a primary care database

Article

Full-text available

Sep 2017

Background People with intellectual disability (ID) have poorer health than the general population; however, there is a lack of comprehensive national data describing their health-care needs and utilisation. Annual health checks for adults with ID have been incentivised through primary care since 2009, but only half of those eligible for such a health check receive one. It is unclear what impact health checks have had on important health outcomes, such as emergency hospitalisation. Objectives To evaluate whether or not annual health checks for adults with ID have reduced emergency hospitalisation, and to describe health, health care and mortality for adults with ID. Design A retrospective matched cohort study using primary care data linked to national hospital admissions and mortality data sets. Setting A total of 451 English general practices contributing data to Clinical Practice Research Datalink (CPRD). Participants A total of 21,859 adults with ID compared with 152,846 age-, gender- and practice-matched controls without ID registered during 2009–13. Interventions None. Main outcome measures Emergency hospital admissions. Other outcomes – preventable admissions for ambulatory care sensitive conditions, and mortality. Data sources CPRD, Hospital Episodes Statistics and Office for National Statistics. Results Compared with the general population, adults with ID had higher levels of recorded comorbidity and were more likely to consult in primary care. However, they were less likely to have long doctor consultations, and had lower continuity of care. They had higher mortality rates [hazard ratio (HR) 3.6, 95% confidence interval (CI) 3.3 to 3.9], with 37.0% of deaths classified as being amenable to health-care intervention (HR 5.9, 95% CI 5.1 to 6.8). They were more likely to have emergency hospital admissions [incidence rate ratio (IRR) 2.82, 95% CI 2.66 to 2.98], with 33.7% deemed preventable compared with 17.3% in controls (IRR 5.62, 95% CI 5.14 to 6.13). Health checks for adults with ID had no effect on overall emergency admissions compared with controls (IRR 0.96, 95% CI 0.87 to 1.07), although there was a relative reduction in emergency admissions for ambulatory care-sensitive conditions (IRR 0.82, 95% CI 0.69 to 0.99). Practices with high health check participation also showed a relative fall in preventable emergency admissions for their patients with ID, compared with practices with minimal participation (IRR 0.73, 95% CI 0.57 to 0.95). There were large variations in the health check-related content that was recorded on electronic records. Limitations Patients with milder ID not known to health services were not identified. We could not comment on the quality of health checks. Conclusions Compared with the general population, adults with ID have more chronic diseases and greater primary and secondary care utilisation. With more than one-third of deaths potentially amenable to health-care interventions, improvements in access to, and quality of, health care are required. In primary care, better continuity of care and longer appointment times are important examples that we identified. Although annual health checks can also improve access, not every eligible adult with ID receives one, and health check content varies by practice. Health checks had no impact on overall emergency admissions, but they appeared influential in reducing preventable emergency admissions. Future work No formal cost-effectiveness analysis of annual health checks was performed, but this could be attempted in relation to our estimates of a reduction in preventable emergency admissions. Funding The National Institute for Health Research Health Services and Delivery Research programme.

Sarcopenia predicts 5-year mortality in older adults with intellectual disabilities

Article

Aug 2023
J INTELL DISABIL RES

Background: People with intellectual disabilities (ID) have a lower life expectancy than their peers without ID. A contributing factor to the lower life expectancy and early mortality could be sarcopenia: low muscle mass and low muscle function. In the general population, sarcopenia strongly predicts early mortality, but this association is unknown in people with ID. Therefore, this study aims to explore the association between sarcopenia and 5-year mortality in older adults with ID. Methods: In the Healthy Ageing and Intellectual Disabilities (HA-ID) study, the prevalence of sarcopenia was measured at baseline among 884 older adults (≥50 years) with ID. All-cause mortality was measured over a 5-year follow-up period. Univariable and multivariable Cox proportional hazard models were applied to determine the association between sarcopenia (no sarcopenia, pre-sarcopenia, sarcopenia, severe sarcopenia) and early mortality, adjusted for age, sex, level of ID, presence of Down syndrome, and co-morbidity (chronic obstructive pulmonary disease, diabetes type 2 and metabolic syndrome). Results: The unadjusted hazard ratio (HR) for sarcopenia was 2.28 [95% confidence interval (CI) 1.48-3.42], P < 0.001), and 2.40 (95% CI 1.40-4.10, P = 0.001) for severe sarcopenia. When adjusted for age, sex, level of ID, and Down syndrome, sarcopenia (HR = 1.72, 95% CI 1.08-2.75, P = 0.022) and severe sarcopenia (HR = 1.86, 95% CI 1.07-3.23, P = 0.028) were significantly associated with early mortality. When additionally adjusted for co-morbidity, the adjusted HR decreased to 1.62 (95% CI 1.02-2.59, P = 0.043) and 1.81 (95% CI 1.04-3.15, P = 0.035) for sarcopenia and severe sarcopenia, respectively. Conclusion: Sarcopenia is an independent risk factor for early mortality in older adults with ID over a 5-year follow-up period. Our results stress the need to delay the incidence and development of sarcopenia in older adults with ID.

Self-efficacy and Optimism in frail elderly men without functional disability attending geriatric outpatient clinic in Mansoura university: a case-control study.

Preprint

Full-text available

Aug 2023

Doaa Ageez

Background Psychological frailty including cognitive, mood, and motivational components has a major impact on the well- being of frail elderly. Therefore, there is an increasing scientific interest in studying different domains of psychological frailty. Unfortunately, the psychological components of frailty are not completely evaluated and currently there is no consensus regarding appropriate intervention. This study aimed to evaluate self-efficacy and optimism in frail elderly without functional disability. This case-control study was conducted between August 2022 and March 2023, and included 70 elderly male community dwelling participants aged ≥ 60 years. The participants were divided into 2 groups: frail and non-frail defined by AVILA modification of Fried criteria. Self-efficacy scale (SES) and Revised-Life orientation test (R-LOT) were applied for all participants. Results Those with physical frailty had lower self-efficacy and optimism scores. R-LOT and SES had moderate diagnostic accuracy in predicting frailty; AUC for both tools were 0.75 and 0.71, respectively. Conclusions Psychological determinants of frailty are as equally important to be addressed as factors affecting physical frailty. self-efficacy and optimism are both affected in frail elderly. The Self-efficacy scale (SES) and the Revised-Life orientation test (R-LOT) should be applied as a measure of psychological resilience during comprehensive assessment of physical frailty to improve overall well-being and resilience among frail elderly.

Lack of consensus regarding the concept of psychological frailty in older adults: A systematic scoping review

Article

May 2023
J CLIN EPIDEMIOL

Objectives: We reviewed the existing definitions of psychological frailty and provided a comprehensive overview of the concept and associated measurements. Study design and setting: We followed the PRISMA guidelines for scoping reviews and the Joanna Briggs Institute Manual for Evidence Synthesis. The eligibility criteria when including the studies were developed based on the participants-concept-context framework. We searched the Cumulative Index to Nursing and Allied Health Literature, Scopus, PubMed, Web of Science, PsycINFO databases, and other sources for relevant studies published between January 2003 and March 2022. Results: The final scoping review included 58 studies. Of these, 40 defined psychological frailty, 7 provided a novel definition, and 11 focused on the components defining psychological frailty. We proposed four groups of components to better characterize psychological frailty: mood, cognitive, other mental health, and fatigue-related problems. We identified 28 measuring tools across studies, and the Tilburg Frailty Indicator was the most frequently used (46.6%). Conclusion: Psychological frailty is a complex concept whose definition lacks consensus. It should include both psychological and physical features. Depression and anxiety are commonly used to define it. This scoping review outlined future research directions for refining the concept of psychological frailty.

Degree of autonomy in making independent choices by frail older people with intellectual disabilities in a care home: A descriptive ethnographic study

Article

Apr 2023
J APPL RES INTELLECT

Background: We aimed to gain more insight into autonomy of older people with intellectual disabilities in a residential care facility in making choices. Methods: We performed a descriptive ethnographic study in a residential facility in the Netherlands for 22 persons, aged 54-89 years, with mild to moderate intellectual disabilities (IQ <70) and low social-emotional development levels. We combined participant observations and qualitative interviews. Results: Based on the observations, the main themes for the interviews were established. Residents indicated to be free to make independent choices, and experienced less autonomy with regard to health issues and finances. Support staff stated that residents' level of autonomy depends on residents' characteristics, needs, preferences, the attitude of support staff and the rules of the care institution. Conclusion: Residents had a clear view on their autonomy in making independent choices. Support staff is mindful of preserving residents' autonomy, which in practice is limited.

Article

Full-text available

Jan 2023

Autism spectrum disorders (ASD) are defined as a set of neurodevelopmental disorders and a lifelong condition. In mice, most of the studies focused on the developmental aspects of these diseases. In this paper, we examined the evolution of motor stereotypies through adulthood in the Shank3ΔC/ΔC mouse model of ASD, and their underlying striatal alterations, at 10 weeks, 20 weeks, and 40 weeks. We highlighted that motor stereotypies worsened at 40 weeks possibly carried by earlier striatal medium spiny neurons (MSN) alterations in GABAergic transmission and morphology. Moreover, we report that 20 weeks could be a critical time‐point in the striatal‐related ASD physiopathology, and we suggest that MSN alterations may not be the direct consequence of developmental issues, but rather be a consequence of other impairments occurring earlier.

Transitions for older people with intellectual disabilities and behaviours that challenge others: A rapid scoping review

Article

Nov 2022
J APPL RES INTELLECT

Background: People with intellectual disabilities and behaviours that challenge others are living longer. This review aimed to explore what is known about the health and social care needs, experiences, service interventions and resources of and for this population as they transition to different care contexts in the UK. Method: A rapid scoping review of published and unpublished literature was conducted based on collaborative working with key stakeholders and using systematic methods of data searching, extraction and analysis. Results: Consistent social work support, skilled staff, suitable accommodation, creative engagement with individuals and families to plan ahead, and timely access to quality healthcare are all required to promote successful transitions as people age, and to avoid unwanted/inappropriate transitions at points of crisis. Conclusions: More research is needed to assess the types of services that this population can and do access as they age, the quality of those services, and the extent to which local commissioners are planning ahead for people with intellectual disabilities and behaviours that challenge others.

Rights of Children with Disability

Chapter

Mar 2022

Prerna Sharma

Children with disabilities are at a point where child rights and disability rights intersect. Inevitably, the very children who need these rights the most are unable, through personal and/or social circumstances, to use them. Human rights perspective in disability means viewing children with disability as subjects and not objects. It entails a shift from viewing this group of children as problems toward viewing them as holders of rights. This chapter is an attempt to look at and understand the rights of children with disabilities as laid out by the Indian Constitution as well as by the United Convention on Rights of the Child. There is also emphasis on the nature of the disabling experiences, the trend of societal attitudes, stigmatization, and risk of abuse toward these children, policies that have been laid out for them, and their prognosis during COVID-19. Recommendations have been made as to how best we can protect the rights of children with disabilities.

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

Article

Full-text available

Feb 2022

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.

Development and validation of a shortened and practical frailty index for people with intellectual disabilities

Article

Full-text available

Dec 2021

Background There is no widely used instrument to detect frailty in people with intellectual disabilities (IDs). We aimed to develop and validate a shorter and more practical version of a published frailty index for people with IDs. Method This study was part of the longitudinal ‘Healthy Ageing and Intellectual Disability’ study. We included 982 people with IDs aged 50 years and over. The previously developed and validated ID-Frailty Index consisting of 51 deficits was used as the basis for the shortened version, the ID-FI Short Form. Content of the ID-FI Short Form was based on statistics and clinical and practical feasibility. We evaluated the precision and validity of the ID-FI Short Form using the internal consistency, the correlation between the ID-FI Short Form and the original ID-Frailty Index, the agreement in dividing participants in the categories non-frail, pre-frail and frail, and the association with survival. Results Seventeen deficits from the original ID-Frailty Index were selected for inclusion in the ID-FI Short Form. All deficits of the ID-FI Short Form are clinically and practically feasible to assess for caregivers and therapists supporting people with ID. We showed acceptable internal consistency with Cronbach's alpha of 0.75. The Pearson correlation between the ID-Frailty Index and the ID-FI Short Form was excellent (r = 0.94, P < 0.001). We observed a good agreement between the full and short forms in dividing the participants in the frailty categories, with a kappa statistic of 0.63. The ID-FI Short Form was associated with survival; with every 1/100 increase on the ID-FI Short Form, the mortality probability increased by 7% (hazard ratio 1.07, P < 0.001). Conclusion The first validation of the ID-FI Short Form shows it to be a promising, practical tool to assess the frailty status of people with ID.

Ageing people with intellectual disabilities and the association between frailty factors and social care: A Swedish national register study

Article

Full-text available

Nov 2021

The aim of this study was to describe the social care provided for different age groups of people with intellectual disability, 55 years or above, and to investigate the association between such care and frailty factors for those with diagnosed level of intellectual disabilities. Descriptive and logistic regression analyses were used. Commonest forms of social care among the 7936 people were Residential care, Daily activities and Contact person. Home help and Security alarm increased with age. The frailty factors significantly associated with increased social care were age, polypharmacy and severe levels of intellectual disabilities. Persons most likely to be in residential care were in the age group 65–79 with polypharmacy and severe disability. The results indicate a need for further research of how frailty factors are considered in social care and longstanding medication, especially then severe intellectual disability hinders communication. A national strategic plan for preventive interventions should be developed to ensure the best possible healthy ageing.

Multi-Group Frailty Trajectories Among Older Koreans: Results from the Korean Longitudinal Study of Aging

Article

Sep 2021
ARCH GERONTOL GERIAT

Background: Studies that examined changes in frailty in older populations have been increasing. However, frailty patterns are often portrayed as having single trajectories corresponding to age, and different courses of change in frailty and related factors remain unexplored. Objectives: We aimed to identify distinct frailty trajectories over time and examine the relationship of frailty trajectories with the sociodemographic and lifestyle-related factors among older Koreans. Methods: We used data of 3160 community-dwelling Korean adults aged ≥65 years from the Korean Longitudinal Study of Aging (2006-2016). We conducted the analyses using group-based trajectory modeling, analysis of variance or chi-square tests, and multinomial logistic regression. Results: We identified three frailty trajectory groups among older Koreans: no frailty, increasing frailty, and high frailty based on a deficit-related frailty measure. Each frailty trajectory group showed unique sociodemographic and lifestyle characteristics. Compared to individuals in the no frailty group, those in the increasing frailty group were more likely to be older, less educated, unemployed, current smokers, and current drinkers. Compared to those in the no frailty group, individuals in the high frailty group were more likely to be older, unemployed, current drinkers, and without regular exercise. Conclusions: Using longitudinal data over a 10-year period, we identified multiple frailty trajectories in a cohort of older Koreans, which highlights a significant heterogeneity in frailty development. Our findings suggest the importance of socioeconomic status in determining different patterns of frailty change and the role of lifestyle factors in delaying frailty.

Factors associated with the progression of deficit accumulation frailty among adults with an intellectual disability: a systematic review revealing research gaps

Article

May 2021

Background: People with an intellectual disability are more likely to experience frailty earlier in life and with greater severity compared to the general population. There is growing consideration of determinants of frailty and identifying factors which may influence the change in frailty status over time. The objective of this review was to investigate factors associated with the progression of frailty over time among adults with an intellectual disability. Methods: A systematic review of literature was conducted using PRISMA guidelines to identify studies reporting factors associated with transitions and trajectories in deficit accumulation frailty among adults with an intellectual disability. The following eligibility criteria was used: defined frailty as deficit accumulation; longitudinal design; reported at least one individual characteristic associated with change in frailty status; sample was people with an intellectual disability aged ≥18 years; English language. No limitation on publication date was applied. Studies which did not measure frailty according to deficit accumulation, did not report the frailty measure used, or had a cross-sectional design were excluded. Selected studies were assessed for quality using the Critical Appraisal Skills Programme (CASP) framework. Results: In total, two studies qualified for inclusion in this review. Findings revealed that frailty defined as deficit accumulation is a dynamic process and improvements are possible. Changes in the direction of frailty states over time among adults with an intellectual disability may be influenced by several factors including baseline frailty status, age, the presence of Down syndrome, functional ability, cognitive ability, living in a group home, and the use of nursing services and therapies. Conclusions: There is a relative paucity of research on frailty among adults with an intellectual disability and the evidence base must be grown. Exploration of the social domain of frailty in this group should be a priority of future research.

Role of Psychotropic Medications in Older Adults

Chapter

Jan 2021

Older adults with intellectual and developmental disabilities (IDD) are at high risk of adverse events relating to inappropriate or poorly managed psychotropic medication use. Nevertheless, when used judiciously as part of a multimodal approach to treatment, psychotropic medications can offer substantial therapeutic benefit for some elders with IDD. This chapter describes the complexities of psychotropic medication use in older people with IDD and outlines how basic principles for prescribing can inform good practice in the face of these complexities. It draws clinicians’ attention to the growing calls to redress the overuse of antipsychotics for challenging behaviours in adults with IDD. Finally, the chapter touches on issues surrounding complementary and alternative medicines with psychotropic properties, and the recent increase in the use of cannabinoids as therapeutic agents.

CVRM bij mensen met een verstandelijke beperking

Article

Aug 2020

Mensen met een verstandelijke beperking hebben vaak meer cardiovasculaire risicofactoren dan mensen zonder verstandelijke beperking. De inschatting van het risico is complexer, de behandeling vraagt vaak meer aandacht en er zijn meer betrokkenen. Dit artikel beschrijft de valkuilen en geeft adviezen.

Inter-sectoral collaboration in the context of supporting adults with intellectual and developmental disabilities who are frail

Article

Apr 2020

There has been a steady growth in the population of adults with intellectual and developmental disabilities, some of whom are known to age prematurely; aging is also associated with increased rates of disability and chronic conditions that can lead to frailty. Supports provided by social and health sectors are crucial to supporting those identified as frail. A case study design was used to investigate the implementation of inter-sectoral collaboration between providers of services from specific social and health sectors; namely, developmental services (aka disability services) and home care services, in the context of supporting those identified as frail. Twenty-three participants (including individuals with intellectual and developmental disabilities, family members, and providers from both sectors) were interviewed using an open-ended format targeting known conditions for effective inter-sectoral collaboration: necessity, opportunity, capacity, relationships, planned action, and sustained outcomes. Interviews were recorded, transcribed verbatim, and coded by two independent researchers. All participants touched on key facilitators and barriers for successful inter-sectoral collaboration across the six conditions. A single exception occurred in that individuals and families did not discuss sustained outcomes. Each of the six conditions for effective inter-sectoral collaboration is relevant to planning required to support adults with intellectual and developmental disabilities who are frail. When it comes to collaborative ventures between social and healthcare teams, the use of resources and tools that both facilitate and promote these conditions should be prioritised.

Frailty in Older Adults With Multiple Myeloma: A Study of US Veterans

Article

Feb 2020

PURPOSE Age-associated cumulative decline across physiologic systems results in a diminished resistance to stressors, including cancer and its treatment, creating a vulnerable state known as frailty. Frailty is associated with increased risk of adverse outcomes in patients with cancer. Identification of frailty in administrative data can allow for assessment of prognosis and facilitate control for confounding variables. The purpose of this study was to assess frailty from claims-based data using the accumulation of deficits approach in veterans with multiple myeloma (MM). METHODS From the Veterans Administration Central Cancer Registry, we identified patients who were diagnosed with MM between 1999 and 2014. Using the accumulation of deficits approach, we calculated a Frailty Index (FI) using 31 health-associated deficits and categorized scores into five groups: nonfrail (FI, 0 to 0.1), prefrail (FI, 0.11 to 0.20), mild frailty (FI, 0.21 to 0.30), moderate frailty (FI, 0.31 to 0.40), and severe frailty (FI, > 0.4). We used Cox proportional hazards regression analysis to assess association between FI score and mortality while adjusting for potential confounders. RESULTS We calculated an FI for 3,807 veterans age 65 years or older. Among the cohort, 28.7% were classified as nonfrail, 41.3% prefrail, 21.6% mildly frail, 6.6% moderately frail, and 1.7% severely frail. Frailty was strongly associated with mortality independent of age, race, MM treatment, body mass index, or statin use. Higher FI score was associated with higher mortality with hazard ratios of 1.33 (95% CI, 1.21 to 1.47), 1.97 (95% CI, 1.70 to 2.20), 2.86 (95% CI, 2.45 to 3.34), and 3.22 (95% CI, 2.46 to 4.22) for prefrail, mildly frail, moderately frail, and severely frail, respectively. CONCLUSION Frailty status is a significant predictor of mortality in older veterans with MM. Assessment of frailty status using the readily available electronic medical records data in administrative data allows for assessment of prognosis.

A Comprehensive Overview of Activities of Daily Living in Existing Frailty Instruments: A Systematic Literature Search

Article

Dec 2019
GERONTOLOGIST

Background and objectives: The relationship between frailty and disability in activities of daily living (ADLs) can be seen in different ways, with disability being-to varying degrees-a characteristic, negative outcome, or predictor of frailty. This conflation of definitions is partly a result of the different frailty tools used in research. Aiming to provide a comprehensive overview, this systematic literature search analyzed (i) if, (ii) to what extent, and (iii) how ADLs are evaluated by frailty instruments. Research design and methods: A search was performed in PubMed, Web of Knowledge, and PsycINFO to identify all frailty instruments, followed by categorization of the ADL items into basic (b-), instrumental (i-), and advanced (a-) ADLs. Results: In total, 192 articles described 217 frailty instruments, from which 52.1% contained ADL items: 45.2% b-ADLs, 35.0% i-ADLs, and 10.1% a-ADLs. The most commonly included ADL items were bathing (b-ADLs); using transportation (i-ADLs); and semiprofessional work engagement in organized social life or leisure activities (a-ADLs). These instruments all had a multidomain origin (χ 2 = 122.4, p < .001). Discussion and implications: Because 52.1% of all instruments included ADL items, the concepts of frailty and disability appear to be highly entangled. This might lead to circular reasoning, serious concerns regarding contamination, and invalid research results.

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

Article

Full-text available

Apr 2019

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.

Epidemiological Issues in Intellectual Disability and Aging Research

Chapter

Jan 2019

Epidemiology is the study of prevalence, incidence, and contributors to chronic conditions and other disorders in a population. Data drawn from epidemiological studies increasingly informs the setting of priorities for public health initiatives and healthcare planning, targeting and implementation. Examples of such datasets are national census data, household surveys, birth and death records, surveillance surveys, health indicator surveys, administrative datasets with health encounter, service utilization, and demographic data, registries, electronic health records, and population surveys targeting persons with specific health conditions or disabilities. Challenges exist to utilizing existing datasets to track aging people with intellectual disability due to differences in definitions and how data are gathered. To improve the availability and comparability of epidemiological studies, there needs to be greater standardization in the definition of intellectual disability, in the designation of levels of disability, agreement on age categories, and the use of standardized identifiers for intellectual disability in national datasets.

How best to support individuals with IDD as they become frail: Development of a consensus statement

Article

Jun 2018

Background While higher rates and earlier onset of frailty have been reported among adults with intellectual and developmental disabilities (IDD), research on how best to support these individuals is lacking. Method An international consultation relied on three consensus building methods: the Nominal Group Technique, an NIH consensus conference approach, and a Delphi survey. Results There is agreement that person‐centered planning and aging in place should be guiding principles. Frailty must be considered earlier than in the general population with the recognition that improvement and maintenance are viable goals. Intersectoral collaboration is needed to coordinate assessments and actions. Safety and planning for the future are important planning considerations, as are the needs of caregivers. Ongoing research is needed. Conclusion The statement offers guidance to respond to frailty among adults with IDD and fosters ongoing exchange internationally on best practice. As new evidence emerges, the statement should be revisited and revised.

Medication use and potentially inappropriate prescribing in older adults with intellectual disabilities: a neglected area of research

Article

Jun 2018

It is known that for all adults, prevalence of potentially inappropriate prescribing (PIP) and polypharmacy increases with advancing age and morbidity. This has been associated with adverse drug reactions and poor outcomes. As a result, screening tools have been developed to identify PIP and to improve prescribing and health outcomes. A growing body of evidence supports the fact that there are even greater concerns among older adults with intellectual disability (ID) who are living longer than before but still have premature mortality and poorer health outcomes compared with the general population. They have different patterns of multimorbidity, with higher rates of epilepsy and mental health conditions. Polypharmacy is prevalent and some prescribing practices may be inappropriate. High exposure to anticholinergic and sedative medicines has additional adverse effects on quality of life. There may also be underutilization of clinically needed therapies. There has been substantial controversy internationally relating to extensive use of psychotropic medicines, particularly off-label use for challenging behaviours. Despite the mounting evidence and concerns about the impact of PIP on quality of life, health and safety for people with ID, appropriate methods to measure PIP are lacking, which represents an important gap in the research literature. Differences in morbidity and medicines use patterns in this population mean instruments used to identify inappropriate medicines in the older population are not suitable. In this perspective article we outline the specific health and medicinal needs for people with ID, the prevalence of polypharmacy and presentation of chronic health conditions in older adults with ID. We provide an overview of the psychotropic medicine classes most frequently used in people with ID which carry substantial risk. We highlight studies to date that have attempted to assess PIP and present research priorities to improve prescribing, health outcomes and quality of life for people with ID.

Le vieillissement des personnes en situation de handicap mental et le cas particulier du syndrome de Down

Article

Mar 2018

Résumé Le handicap mental se caractérise par une déficience intellectuelle et du comportement adaptatif, liée à une altération du développement mental. Le vieillissement des personnes en situation de handicap mental est très peu étudié. Leur espérance de vie reste plus faible qu’en population générale, et de nombreuses comorbidités somatiques émergent avec l’avancée en âge. Il existe par ailleurs une synergie complexe entre fragilité, handicap et comorbidités. La prise en charge de cette fragilité et de ce vieillissement précoces est encore peu formalisée. L’exemple du syndrome de Down (trisomie 21), première cause génétique de handicap mental, mieux exploré, pourrait être utile afin de généraliser la prise en charge gériatrique de ces patients vulnérables.

Rate of deficit accumulation in home care users with intellectual and developmental disabilities

Article

Jan 2018
ANN EPIDEMIOL

Purpose: To identify factors associated with the rate of deficit accumulation in a population of adults with intellectual and developmental disabilities (IDD). Methods: A longitudinal analysis of administratively held clinical data collected at routine home care assessments across Ontario (Canada) using the Resident Assessment Instrument for Home Care (RAI-HC) was conducted using a cohort comprised of 5074 adults with IDD 18-99 years of age who had at least two home care assessments between April 1, 2003 and March 31, 2015. Rates of deficit accumulation were calculated across variables of interest. Incidence rate ratios and 95% confidence intervals are presented. Negative binomial regression models using a generalized estimating equation (GEE) approach were developed. Results: Increasing age, Down syndrome, and living in a group home were significant predictors of deficit accumulation. Rates of deficit accumulation tended to be higher among prefrail and frail individuals; however, impaired cognition and impairment in activities of daily living were associated with slower deficit accumulation. The relationship between provision of nursing and therapy services and deficit accumulation is unclear. Conclusions: Frailty should be monitored among adults with IDD starting at age 40 years, those with Down syndrome, and those who live in group homes.

Once frail, always frail? Frailty transitions in home care users with intellectual and developmental disabilities: Frailty in home care users with IDD

Article

Dec 2017

Aim: Frailty is understood as a dynamic non-linear process, and used to indicate age-related decline. Recent work has shown that adults with intellectual and developmental disabilities experience higher rates of frailty at much earlier ages than the general population. The present study describes transitions in frailty status (i.e. non-frail, pre-frail, frail) over 1 year, and explores the association between baseline frailty status and worsening/death over time. Methods: Results are based on secondary analysis of 2893 individuals with intellectual and developmental disabilities receiving community-based home care services in Ontario (Canada). Frailty status is based on a validated 42-item frailty index (FI); where FI ≤0.21 indicates non-frail, 0.21 < FI ≤ 0.3 indicates pre-frail and FI >0.30 indicates frail. Baseline characteristics of frailty groups at baseline were compared using the χ2 -test/analysis of variance. Relative risk of worsening/dying was calculated using a modified Poisson regression model. Results: Initially, 67.0% of participants were non-frail, 16.2% were pre-frail and 16.8% were frail. Of those non-frail at baseline, 84.3% remained non-frail, 11.8% worsened and 3.9% died. Among those initially pre-frail, 37.0% remained stable, 35.3% improved, 18.2% worsened and 9.6% died. Although similar proportions of frail individuals improved (37.4%) or remained stable (36.8%), 25.9% had died. After controlling for other factors, being pre-frail at baseline was associated with an increase in the risk of worsening or death (RR 1.24, 95% CI 1.04-1.49). Conclusions: While many experience worsening of frailty status, stability and improvement are viable goals of care. Future research should examine the rate at which non-frail, pre-frail and frail individuals accumulate deficits, as well as the impact of home care services on frailty. Geriatr Gerontol Int 2017; ••: ••-••.

The Power of Population Health Data on Aging and Intellectual and Developmental Disabilities: Reactions of Knowledge Users: Knowledge User Reactions to Population Data on Aging

Article

Nov 2017

Recent work in Ontario (Canada) revealed that adults with intellectual and developmental disabilities experience higher rates of frailty and use of aging care services at earlier ages than the general population, and that the subset aged 65+ years is increasing. This paper describes the reaction of knowledge users to study findings and implications for policy and practice. A knowledge transfer webinar was held with nearly 200 people representing different regions of the province, participant types (family members, service providers, decision makers, researchers), and sectors (health and developmental services). Most participants viewed health and developmental services systems as not ready for the aging population with intellectual and developmental disabilities for two main reasons: insufficient cross-sector expertise and inadequate funding. The need for healthcare, challenged informal supports, lack of services, and the desire for independence were thought to drive higher use of home care among younger adults, while inadequacies within the developmental services sector, challenged informal supports, medical and care needs, lack of community supports, and the need for coordinated cross-sector services were noted as contributing to admissions to long-term care. There is a lack of evidence-based information on aging and intellectual and developmental disabilities. Ongoing access to quality, population-level data on the number and needs of persons with intellectual and developmental disabilities is needed to improve policies and practices to support aging in the community. Persons working in health and developmental services had a shared understanding of the need for system reform, better collaboration, and integration of resources. Both sectors also viewed admission to long-term care as particularly problematic. The province-wide webinar brought together persons with various levels of responsibility from different sectors. Future exchanges should focus on identifying and promoting best practices.

Comparison of two frailty indices in the physicians' health study

Article

Feb 2017

Background: As the population ages it is important to identify frailty, a powerful predictor of morbidity and mortality, and often an important unmeasured confounder. We sought to develop a frailty index in the Physician's Health Study (PHS) and estimate the association with mortality. Methods: Prospective cohort study. Annual questionnaire assessed mood, function and health status. Two frailty scores were compared - cumulative deficit frailty index (PHS FI) and modified Study of Osteoporotic Fracture (mSOF) frailty score. Endpoints committee confirmed mortality. Results: 12,180 male physicians ≥60 years were analyzed. Mean(SD) follow-up was 10(3) years, 2168 deaths occurred. PHS FI identified 4412 (36%) physicians robust, 5305 (44%) pre-frail, and 2463 (20%) frail, while mSOF identified 7323 (61%) robust, 3505 (29%) pre-frail and 1215 (10%) frail. Age-standardized rate of death was lower among subjects identified as robust using the PHS FI, 11/1000 person-years (PY) (95% Confidence Interval (CI): 9.5-11.9) compared to 14/1000PY (95% CI: 13.5-15.4) using mSOF [P-difference <0.001]. In the prefrail group, death rates were 16/1000PY in PHS FI and 21/1000PY in mSOF, [P-difference <0.001]. There was no difference in age-adjusted mortality rates in the frail group according to each definition (35 vs 33/1000PY). Survival analysis showed an increased risk of mortality in each frailty category using either definition, (log-rank p<0.001). Conclusion: The PHS FI outperformed mSOF in identifying risk of death particularly in robust and pre-frail categories. Similar indices can be created in existing datasets to identify frail individuals and where appropriate account for frailty, an often unmeasured confounder.

Ankle Brachial Index Collaboration. Ankle brachial index combined with Framingham Risk Score to predict cardiovascular events and mortality

Article

Full-text available

Jan 2008

Anthropometric measurements in the elderly: Age and gender differences

Article

Full-text available

Feb 2002
BRIT J NUTR

In clinical practice and epidemiological surveys, anthropometric measurements represent an important component of nutritional assessment in the elderly. The anthropometric standards derived from adult populations may not be appropriate for the elderly because of body composition changes occurring during ageing. Specific anthropometric reference data for the elderly are necessary. In the present study we investigated anthropometric characteristics and their relationship to gender and age in a cross-sectional sample of 3356 subjects, randomly selected from an elderly Italian population. In both sexes, weight and height significantly decreased with age while knee height did not. The BMI was significantly higher in women than in men (27·6 SD 5·7 V. 26·4 sd 3·7; P<0·001) and it was lower in the oldest than in the youngest subjects (P<0·05) of both genders. The 75th year of age was a turning point for BMI as for other anthropometric measurements. According to BMI values, the prevalence of malnutrition was lower than 5 % in both genders, whereas obesity was shown to have a higher prevalence in women than in men (28 % v. 16 %; P<0·001). Waist circumference and waist : hip ratio values were higher for the youngest men than for the oldest men (P<0·05), whereas in women the waist : hip ratio values were higher in the oldest women, suggesting that visceral redistribution in old age predominantly affects females. In conclusion, in the elderly the oldest subjects showed a thinner body frame than the youngest of both genders, and there was a more marked fat redistribution in women.

Are the frail destined to fail? Frailty index as predictor of surgical morbidity and mortality in the elderly

Article

Full-text available

Jun 2012

America's aging population has led to an increase in the number of elderly patients necessitating emergency general surgery. Previous studies have demonstrated that increased frailty is a predictor of outcomes in medicine and surgical patients. We hypothesized that use of a modification of the Canadian Study of Health and Aging Frailty Index would be a predictor of morbidity and mortality in patients older than 60 years undergoing emergency general surgery. Data were obtained from the National Surgical Quality Improvement Program Participant Use Files database in compliance with the National Surgical Quality Improvement Program Data Use Agreement. We selected all emergency cases in patients older than 60 years performed by general surgeons from 2005 to 2009. The effect of increasing frailty on multiple outcomes including wound infection, wound occurrence, any infection, any occurrence, and mortality was then evaluated. Total sample size was 35,334 patients. As the modified frailty index increased, associated increases occurred in wound infection, wound occurrence, any infection, any occurrence, and mortality. Logistic regression of multiple variables demonstrated that the frailty index was associated with increased mortality with an odds ratio of 11.70 (p < 0.001). Frailty index is an important predictive variable in emergency general surgery patients older than 60 years. The modified frailty index can be used to evaluate risk of both morbidity and mortality in these patients. Frailty index will be a valuable preoperative risk assessment tool for the acute care surgeon. Level of Evidence: Prognostic study, level II.

Feasibility and reliability of physical fitness tests in older adults with intellectual disability: A pilot study

Article

Full-text available

May 2012
J INTELLECT DEV DIS

Physical fitness is relevant for wellbeing and health, but knowledge on the feasibility and reliability of instruments to measure physical fitness for older adults with intellectual disability is lacking. Feasibility and test-retest reliability of a physical fitness test battery (Box and Block Test, Response Time Test, walking speed, grip strength, 30-s chair stand, 10-m Incremental Shuttle Walking Test and the Extended Modified Back-Saver Sit-and-Reach Test) were investigated in older adults with ID in a convenience sample of 36 older adults (mean 65.9, range 50-89 years), with differing levels of intellectual disability and mobility. All tests to measure physical fitness in older adults with ID had moderate to excellent feasibility and had sufficient test-retest reliability (ICCs .63-.96). No statistically significant learning effects were found.

The Frailty Index in Europeans: Association with Age and Mortality

Article

Full-text available

Apr 2012
AGE AGEING

the frailty index (FI) is an approach to the operationalisation of frailty based on accumulation of deficits. It has been less studied in Europeans. to construct sex-specific FIs from a large sample of Europeans and study their associations with age and mortality. longitudinal population-based survey. the Survey of Health, Ageing and Retirement in Europe (SHARE, http://share-dev.mpisoc.mpg.de/). a total of 16,217 females and 13,688 males aged ≥50 from wave 1 (2004-05). Mortality data were collected between 2005 and 2006 (mean follow-up: 2.4 years). regression curve estimations between age and an FI constructed as per the standard procedure. Logistic regressions were used to assess the relative effects of age and the FI towards mortality. in both sexes, there was a significant non-linear association between age and the FI (females: quadratic R(2) = 0.20, P < 0.001; males: quadratic R(2) = 0.14, P < 0.001). Overall, the FI was a much stronger predictor of mortality than age, even after adjusting for the latter (females: age-adjusted OR 100.5, 95% confidence interval (CI): 46.3-218.2, P < 0.001; males: age-adjusted OR 221.1, 95% CI: 106.7-458.4, P < 0.001). the FI had the expected properties in this large sample of Europeans.

Searching for an Operational Definition of Frailty: A Delphi Method Based Consensus Statement. The Frailty Operative Definition-Consensus Conference Project

Article

Full-text available

Apr 2012
J GERONTOL A-BIOL

Background: There is no consensus regarding the definition of frailty for clinical uses. Methods: A modified Delphi process was used to attempt to achieve consensus definition. Experts were selected from different fields and organized into five Focus Groups. A questionnaire was developed and sent to experts in the area of frailty. Responses and comments were analyzed using a pre-established strategy. Statements with an agreement more than or equal to 80% were accepted. Results: Overall, 44% of the statements regarding the concept of frailty and 18% of the statements regarding diagnostic criteria were accepted. There was consensus on the value of screening for frailty and about the identification of six domains of frailty for inclusion in a clinical definition, but no agreement was reached concerning a specific set of clinical/laboratory biomarkers useful for diagnosis. Conclusions: There is agreement on the usefulness of defining frailty in clinical settings as well as on its main dimensions. However, additional research is needed before an operative definition of frailty can be established.

The Predictive Validity of the Tilburg Frailty Indicator: Disability, Health Care Utilization, and Quality of Life in a Population at Risk

Article

Full-text available

Jan 2012
GERONTOLOGIST

To assess the predictive validity of frailty and its domains (physical, psychological, and social), as measured by the Tilburg Frailty Indicator (TFI), for the adverse outcomes disability, health care utilization, and quality of life. The predictive validity of the TFI was tested in a representative sample of 484 community-dwelling persons aged 75 years and older in 2008 (response rate 42%). A subset of all respondents participated 1 year later (N = 336, 69%) and again 2 years later (N = 266, 55%). We used the TFI, the Groningen Activity Restriction Scale assessing disability, seven indicators of health care utilization, and a brief version of the World Health Organization Quality of Life questionnaire (WHOQOL-BREF). The WHOQOL-BREF was assessed in 2008 and 2010; all others were assessed in 2008, 2009, and 2010. The predictive validity of the TFI assessed in 2008 for disability, health care utilization, and quality of life was corroborated by (a) medium to very large associations of frailty with adverse outcomes 1 or 2 years later; (b) mostly good to excellent area under the curve of total frailty; and (c) an increase in predictive accuracy of most adverse outcomes, even after controlling for that same adverse outcome in 2008, and life-course determinants and multimorbidity. Physical frailty was mostly responsible for the predictive validity of the TFI. This study showed that the TFI is a valid instrument to predict disability, many indicators of health care utilization, and quality of life of older people, 1 and 2 years later.

Nontraditional risk factors combine to predict Alzheimer disease and dementia

Article

Full-text available

Jul 2011
NEUROLOGY

To investigate whether dementia risk can be estimated using only health deficits not known to predict dementia. A frailty index consisting of 19 deficits not known to predict dementia (the nontraditional risk factors index [FI-NTRF]) was constructed for 7,239 cognitively healthy, community-dwelling older adults in the Canadian Study of Health and Aging. From baseline, their 5-year and 10-year risks for Alzheimer disease (AD), dementia of all types, and survival were estimated. The FI-NTRF was closely correlated with age (r2 > 0.96, p < 0.001). The incidence of AD and dementia increased exponentially with the FI-NTRF (r2 > 0.75, p < 0.001 over 10 years). Adjusted for age, sex, education, and baseline cognition, the odds ratio of dementia increased by 3.2% (p = 0.021) for each deficit (that was not known to predict dementia) accumulated, outperforming the individual cognitive risk factors. The FI-NTRF discriminated people with AD and all-cause dementia from those who were cognitively healthy with an area under the receiver operating characteristic curve of 0.66 ± 0.03. Comprehensive re-evaluation of a well-characterized cohort showed that age-associated decline in health status, in addition to traditional risk factors, is a risk factor for AD and dementia. General health may be an important confounder to consider in dementia risk factor evaluation. If a diverse range of deficits is associated with dementia, then improving general health might reduce dementia risk.

A frailty index to predict the mortality risk in a population of senior Mexican adults

Article

Full-text available

Nov 2009
BMC Geriatr

Background Frailty in the elderly can be regarded as nonspecific vulnerability to adverse health outcomes, caused by multiple factors. The aim was to analyze the relationships between the frailty index, age and mortality in a two year follow up study of Mexican elderly. Methods A frailty index was developed using 34 variables. To obtain the index, the mean of the total score for each individual was obtained. Survival analyses techniques were used to examine the risk ratios for the different levels of the frailty index. Kaplan-Meier estimates were obtained, adjusted for age and gender. Cox proportional hazards models were also built to obtain hazard ratio estimates. Results A total of 4082 participants was analyzed. Participants had an average age of 73 years and 52.5% were women. On average, participants were followed-up for 710 days (standard deviation = 111 days) and 279 of them died. Mortality increased with the frailty index level, especially in those with levels between .21 to .65, reaching approximately 17% and 21%, respectively. Cox proportional hazards models showed that participants with frailty index levels associated to increased mortality (.21 and higher) represent 24.0% of those aged 65-69 years and 47.6% of those 85 and older. Conclusion The frailty index shows the properties found in the other studies, it allows stratifying older Mexican into several groups different by the degree of the risk of mortality, and therefore the frailty index can be used in assessing health of elderly.

Cognitive Status and Future Risk of Frailty in Older Mexican Americans

Article

Full-text available

Nov 2010
J GERONTOL A-BIOL

Because cognitive impairment and frailty share common risk factors (eg, high proinflammatory cytokines), we examined whether poor cognition predicts subsequent risk of frailty in initially nonfrail Mexican Americans aged 67 years and older. Frailty was defined as meeting one or more of the following components: (a) unintentional weight loss of >10 pounds, (b) weakness, (c) self-reported exhaustion, and (d) slow walking speed. Sociodemographic factors, Mini-Mental State Examination, medical conditions (stroke, heart attack, diabetes, arthritis, cancer, and hypertension), and depressive symptoms were obtained. Main outcome measure was risk of becoming frail over 10 years. Out of 942 participants who were nonfrail at baseline (1995-1996), 57.8% were women and the mean age was 73.7 years (SD = 5.3). In general estimation equation models testing the relationship between Mini-Mental State Examination (<21 vs. ≥21) and the risk of becoming frail over a 10-year period, there was a significant association (odds ratio = 1.09, 95% confidence interval = 1.00-1.19; p = .0310)] between the cognition-by-time interaction and odds of becoming prefrail or frail over time. This association was independent of age, sex, marital status, education, time, and medical conditions, indicating that nonfrail participants with poor cognition had a 9% odds per year of becoming frail over time compared with those with good cognition. Low Mini-Mental State Examination score was independently associated with increased risk of frailty over a 10-year period in older Mexican Americans. Low Mini-Mental State Examination score may be an early marker for future risk of frailty.

Frailty and Mortality Among Chinese at Advence Ages

Article

Full-text available

Mar 2009
J GERONTOL B-PSYCHOL

This study investigates the factors associated with frailty and the association of frailty with mortality in a national sample of adults aged 65-109 in China. Using the 2002 wave of the Chinese Longitudinal Healthy Longevity Survey, we construct a frailty index (FI) based on 39 measures available in the data set. We use ordinal logistic regressions to examine the factors associated with the FI and use Weibull hazard regression to examine the association between frailty and 3-year mortality from 2002 to 2005. Age, sex, ethnicity, urban-rural residence, economic condition, religious involvement, and daily exercise are significantly associated with levels of frailty. Hazard analyses further reveal that the FI is a robust predictor of mortality at advanced ages and that the relationship between frailty and mortality is independent of various covariates. Discussion The measurement and analysis of frailty have broad implications for public health initiatives designed to target individuals with the diminished capacity to effectively compensate for external stressors and to prevent further declines associated with aging and mortality. A key to healthy longevity is the prevention, postponement, and potential recovery from physical and cognitive deficits at advanced ages through enhanced medical interventions and treatments.

Cumulative Deficits and Physiological Indices as Predictors of Mortality and Long Life

Article

Full-text available

Nov 2008

We evaluated the predictive potential for long-term (24-year) survival and longevity (85+ years) of an index of cumulative deficits (DI) and six physiological indices (pulse pressure, diastolic blood pressure, pulse rate, serum cholesterol, blood glucose, and hematocrit) measured in mid- to late life (44-88 years) for participants of the 9th and 14th Framingham Heart Study examinations. For all ages combined, the DI, pulse pressure, and blood glucose are the strongest determinants of both long-term survival and longevity, contributing cumulatively to their explanation. Diastolic blood pressure and hematocrit are less significant determinants of both of these outcomes. The pulse rate is more relevant to survival, whereas serum cholesterol is more relevant to longevity. Only the DI is a significant predictor of longevity and mortality for each 5-year age group ranging from 45 to 85 years. The DI appears to be a more important determinant of long-term risks of death and longevity than are the physiological indices.

A standard procedure for creating a frailty index

Article

Full-text available

Oct 2008
BMC Geriatr

Frailty can be measured in relation to the accumulation of deficits using a frailty index. A frailty index can be developed from most ageing databases. Our objective is to systematically describe a standard procedure for constructing a frailty index. This is a secondary analysis of the Yale Precipitating Events Project cohort study, based in New Haven CT. Non-disabled people aged 70 years or older (n = 754) were enrolled and re-contacted every 18 months. The database includes variables on function, cognition, co-morbidity, health attitudes and practices and physical performance measures. Data came from the baseline cohort and those available at the first 18-month follow-up assessment. Procedures for selecting health variables as candidate deficits were applied to yield 40 deficits. Recoding procedures were applied for categorical, ordinal and interval variables such that they could be mapped to the interval 0-1, where 0 = absence of a deficit, and 1= full expression of the deficit. These individual deficit scores were combined in an index, where 0= no deficit present, and 1= all 40 deficits present. The values of the index were well fit by a gamma distribution. Between the baseline and follow-up cohorts, the age-related slope of deficit accumulation increased from 0.020 (95% confidence interval, 0.014-0.026) to 0.026 (0.020-0.032). The 99% limit to deficit accumulation was 0.6 in the baseline cohort and 0.7 in the follow-up cohort. Multivariate Cox analysis showed the frailty index, age and sex to be significant predictors of mortality. A systematic process for creating a frailty index, which relates deficit accumulation to the individual risk of death, showed reproducible properties in the Yale Precipitating Events Project cohort study. This method of quantifying frailty can aid our understanding of frailty-related health characteristics in older adults.

Polypharmacy: Misleading, but manageable

Article

Full-text available

Feb 2008

The percentage of the population described as elderly is growing, and a higher prevalence of multiple, chronic disease states must be managed concurrently. Healthcare practitioners must appropriately use medication for multiple diseases and avoid risks often associated with multiple medication use such as adverse effects, drug/drug interactions, drug/disease interactions, and inappropriate dosing. The purpose of this study is to identify a consensus definition for polypharmacy and evaluate its prevalence among elderly outpatients. The authors also sought to identify or develop a clinical tool which would assist healthcare practitioners guard against inappropriate drug therapy in elderly patients. The most commonly cited definition was a medication not matching a diagnosis. Inappropriate was part of definitions used frequently. Some definitions placed a numeric value on concurrent medications. Two common definitions (ie, 6 or more medications or a potentially inappropriate medication) were used to evaluate polypharmacy in elderly South Carolinians (n = 1027). Data analysis demonstrates that a significant percentage of this population is prescribed six or more concomitant drugs and/or uses a potentially inappropriate medication. The findings are 29.4% are prescribed 6 or more concurrent drugs, 15.7% are prescribed one or more potentially inappropriate drugs, and 9.3% meet both definitions of polypharmacy used in this study. The authors recommend use of less ambiguous terminology such as hyperpharmacotherapy or multiple medication use. A structured approach to identify and manage inappropriate polypharmacy is suggested and a clinical tool is provided.

Adult Norms for the Box and Block Test of Manual Dexterity

Article

Full-text available

Jul 1985

The Box and Block Test, a test of manual dexterity, has been used by occupational therapists and others to evaluate physically handicapped individuals. Because the test lacked normative data for adults, the results of the test have been interpreted subjectively. The purpose of this study was to develop normative data for adults. Test subjects were 628 Normal adults (310 males and 318 females) from the seven-county Milwaukee area. Data on males and females 20 to 94 years old were divided into 12 age groups. Means, standard deviations, standard error, and low and high scores are reported for each five-year age group. These data will enable clinicians to objectively compare a patient's score to a normal population parameter.

Assessing the Nutritional Status of the Elderly: The Mini Nutritional Assessment as Part of the Geriatric Evaluation

Article

Full-text available

Feb 1996

Life expectancy of people with intellectual disability: A 35-year follow-up study

Article

Full-text available

Oct 2000

A 35-year follow-up study based on a nation-wide population study of the life expectancy of people with intellectual disability (ID) was undertaken. The study population consisted of a total of 60,969 person-years. A prospective cohort study with mortality follow-up for 35 years was used and the life expectancy of people with ID was calculated for different levels of intelligence. Proportional hazard models were used to assess the influence of level of intelligence and associated disorders on survival. People with mild ID did not have poorer life expectancy than the general population and subjects with mild ID did not have lower life expectancy in the first 3 decades of life. In cases with profound ID, the proportion of expected life lost was > 20% for almost all age groups. The female preponderance was manifested from the age of 60 years onwards, 25 years later than in the general population. Respectively, survival between sexes differed less. Epilepsy and/or hearing impairment increased the relative risk of death for all levels of ID. The prevalence of people with ID over 40 years was 0.4%. People with ID now live longer than previously expected, and the ageing of people with mild ID appears to be equal to that of the general population, posing new challenges to health care professionals.

Frailty in Older Adults Evidence for a Phenotype

Article

Full-text available

Apr 2001

Frailty is considered highly prevalent in old age and to confer high risk for falls, disability, hospitalization, and mortality. Frailty has been considered synonymous with disability, comorbidity, and other characteristics, but it is recognized that it may have a biologic basis and be a distinct clinical syndrome. A standardized definition has not yet been established. To develop and operationalize a phenotype of frailty in older adults and assess concurrent and predictive validity, the study used data from the Cardiovascular Health Study. Participants were 5,317 men and women 65 years and older (4,735 from an original cohort recruited in 1989-90 and 582 from an African American cohort recruited in 1992-93). Both cohorts received almost identical baseline evaluations and 7 and 4 years of follow-up, respectively, with annual examinations and surveillance for outcomes including incident disease, hospitalization, falls, disability, and mortality. Frailty was defined as a clinical syndrome in which three or more of the following criteria were present: unintentional weight loss (10 lbs in past year), self-reported exhaustion, weakness (grip strength), slow walking speed, and low physical activity. The overall prevalence of frailty in this community-dwelling population was 6.9%; it increased with age and was greater in women than men. Four-year incidence was 7.2%. Frailty was associated with being African American, having lower education and income, poorer health, and having higher rates of comorbid chronic diseases and disability. There was overlap, but not concordance, in the cooccurrence of frailty, comorbidity, and disability. This frailty phenotype was independently predictive (over 3 years) of incident falls, worsening mobility or ADL disability, hospitalization, and death, with hazard ratios ranging from 1.82 to 4.46, unadjusted, and 1.29-2.24, adjusted for a number of health, disease, and social characteristics predictive of 5-year mortality. Intermediate frailty status, as indicated by the presence of one or two criteria, showed intermediate risk of these outcomes as well as increased risk of becoming frail over 3-4 years of follow-up (odds ratios for incident frailty = 4.51 unadjusted and 2.63 adjusted for covariates, compared to those with no frailty criteria at baseline). This study provides a potential standardized definition for frailty in community-dwelling older adults and offers concurrent and predictive validity for the definition. It also finds that there is an intermediate stage identifying those at high risk of frailty. Finally, it provides evidence that frailty is not synonymous with either comorbidity or disability, but comorbidity is an etiologic risk factor for, and disability is an outcome of, frailty. This provides a potential basis for clinical assessment for those who are frail or at risk, and for future research to develop interventions for frailty based on a standardized ascertainment of frailty.

Physical status: the use and interpretation of anthropometry. Report of a WHO Expert Committee

Article

Jan 1995

World Health Organization

Assessment of older people: Self maintaining and Instrumental Activities of Daily Living

Article

Jan 1969

Prevalence of hearing impairment in adults with an intellectual disability: Cross-sectional population study

Article

Jan 2006

Searching for an Operational Definition of Frailty: A Delphi Method Based Consensus Statement. The Frailty Operative Definition-Consensus Conference Project

Article

Jan 2013

Functional evaluation: The Barthel Index

Article

Feb 1965
Md Med J

Evaluative Frailty Index for Physical Activity (EFIP): A Reliable and Valid Instrument to Measure Changes in Level of Frailty

Article

Dec 2012
PHYS THER

Background: Physical activity is assumed to be important in the prevention and treatment of frailty. It is unclear, however, to what extent frailty can be influenced because instruments designed to assess frailty have not been validated as evaluative outcome instruments in clinical practice. Objectives: The aims of this study were: (1) to develop a frailty index (i.e., the evaluative frailty index for physical activity [EFIP]) based on the method of deficit accumulation and (2) to test the clinimetric properties of the EFIP. Design: The content of the EFIP was determined using a written Delphi procedure. Intrarater reliability, interrater reliability, and construct validity were determined in an observational study (n=24). Method: Intrarater reliability and interrater reliability were calculated using Cohen kappa and intraclass correlation coefficients (ICCs). Construct validity was determined by correlating the score on the EFIP with those on the timed "up & go" test (TUG), the performance-oriented mobility assessment (POMA), and the Cumulative Illness Rating Scale for Geriatrics (CIRS-G). Results: Fifty items were included in the EFIP. Interrater reliability (Cohen kappa=0.72, ICC=.96) and intrarater reliability (Cohen kappa=0.77 and 0.80, ICC=.93 and .98) were good. As expected, a fair to moderate correlation with the TUG, POMA, and CIRS-G was found (.61, -.70, and .66, respectively). Limitations: Reliability and validity of the EFIP have been tested in a small sample. These and other clinimetric properties, such as responsiveness, will be assessed or reassessed in a larger study population. Conclusion: The EFIP is a reliable and valid instrument to evaluate the effect of physical activity on frailty in research and in clinical practice.

Prediction of Adverse Health Outcomes in Older People Using a Frailty Index Based on Routine Primary Care Data

Article

Jul 2012
J GERONTOL A-BIOL

Background: A general frailty indicator could guide general practitioners (GPs) in directing their care efforts to the patients at highest risk. We investigated if a Frailty Index (FI) based on the routine health care data of GPs can predict the risk of adverse health outcomes in community-dwelling older people. Methods: This was a retrospective cohort study with a 2-year follow-up period among all patients in an urban primary care center aged 60 and older: 1,679 patients (987 women [59%], median age, 73 years [interquartile range, 65-81]). For each patient, a baseline FI score was computed as the number of health deficits present divided by the total number of 36 deficits on the FI. Adverse health outcomes were defined as the first registered event of an emergency department (ED) or after-hours GP visit, nursing home admission, or death. Results: In total, 508 outcome events occurred within the sample population. Kaplan-Meier survival curves were constructed according to FI tertiles. The tertiles were able to discriminate between patients with low, intermediate, and high risk for adverse health outcomes (p value < .001). With adjustments for age, consultation gap, and sex, a one deficit increase in the FI score was associated with an increased hazard for adverse health outcomes (hazard ratio, 1.166; 95% confidence interval [CI], 1.129-1.210) and a moderate predictive ability for adverse health outcomes (c-statistic, 0.702; 95% CI, 0.680-0.724). Conclusions: An FI based on International Classification of Primary Care (ICPC)-encoded routine health care data does predict the risk of adverse health outcomes in elderly population.

Frailty vs. Disability Distinctions in People With Intellectual Disabilities

Article

Mar 2010
J Pol Pract Intellect Disabil

While the extent of research on age-related frailty among adults in general has increased substantially during the past two decades, there has been a void in equivalent research with respect to adults with intellectual disabilities (ID). While frailty and disability have been seen as different, but overlapping, concepts in the field of ID, the concept of frailty is missing an empirical foundation. The authors define the concept of frailty as applied to adults with ID, using indicators based on Fried's definition (i.e., a physiological state of increased vulnerability to stressors that follows from decreased physiological reserves and dysregulation of a physiological system) and Rockwood's frailty criteria (multisystemic instability, change over time, allowance for heterogeneity, association with aging, and association with an increased risk of adverse outcomes). They developed a frailty questionnaire and tested their concept of frailty against the concept of disability. To do this, frailty-related data using self-report and third-party interviews were collected within the Austrian component of the POMONA II Project using a sample of 190 people with ID aged between 18 and 76 years. Variables in four frailty domains—social, cognitive, physical, and mental health—were assessed and defined as contributing to causal frailty factors. Similarities of the frailty syndrome were analyzed between the general population and the population with ID. The results offer evidence of a “frailty syndrome” affecting older people with ID.

Frailty and the role of inflammation, immunosenescence and cellular ageing in the very old: Cross-sectional findings from the Newcastle 85+ Study

Article

Jun 2012

Age-related frailty is an increasing societal challenge with growing emphasis on identifying its underlying pathophysiology and prospects for intervention. We report findings from the first comprehensive study of frailty and biomarkers of inflammation, immunosenescence and cellular ageing in the very old. Using cross-sectional data from the Newcastle 85+ Study (n=845, aged 85), frailty was operationalized by the Fried and Rockwood models and biomarker associations explored using regression analysis. We confirmed the importance of inflammatory markers (IL-6, TNF-alpha, CRP, neutrophils) in frailty in the very old, previously established only in younger-old populations. Limited evidence was found for immunosenescence in frailty; although total lymphocyte count was inversely related, no association was found with the immune risk profile and the inverse associations observed with memory/naïve CD8 T and B cell ratios were in the opposite direction to that expected. We found no association with frailty in the very old for CMV sero-positivity, telomere length, markers of oxidative stress or DNA damage and repair. The Fried and Rockwood frailty models measure different albeit overlapping concepts yet biomarker associations were generally consistent between models. Difficulties in operationalizing the Fried model, due to high levels of co-morbidity, limit its utility in the very old.

Frailty and Disability in Older Adults with Intellectual Disabilities: Results from the Healthy Ageing and Intellectual Disability Study

Article

May 2012
J AM GERIATR SOC

Development of a frailty index for older people with intellectual disabilities: Results from the HA-ID study

Abstract

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