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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 unjustiably exclude individuals with ID from IC treatment. Our objective was to compare the classication 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 classied according to the CFS and the ID-frailty index.

Results: Of the cohort of 982 older adults with ID, 626 (63.7%) would be classifed 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 classied 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 classied 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.

Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

Background and objective

Everyday information and communication technologies (EICTs) are increasingly being used in our society, for both general and health-related purposes. This study aims to compare how older adults with cognitive impairment perceive relevance and level of EICT challenge between eHealth use and general use.

Methods

This cross-sectional study includes 32 participants (65–85 years of age) with cognitive impairment of different origins (due to e.g., stroke or dementia). The Short Everyday Technology Use Questionnaire+ (S-ETUQ+) was used, providing information about the relevance of EICTs and measuring the EICT level of challenge. Data were analysed with descriptive statistics, standardized z-tests and Fisher’s exact tests. The significance level was set to p < .05.

Results

The result shows that the perceived amount of relevant EICTs for eHealth use was lower in all 16 EICTs compared to those of general use. About the perceived level of challenge, a significant difference was detected in one of the seven included EICTs between eHealth use and general use.

Conclusions

In this sample, all EICTs were perceived as having lower relevance for eHealth use compared to general use, suggesting that the purpose of using an EICT affects the perceived relevance of it. Also, once an EICT is perceived as relevant and used for eHealth purposes, there seem to be little to no differences in perceived challenge compared to the same EICT used for general purposes.

Purpose

This study challenges the notion that people living with dementia are unable to achieve novel learning without focussed intervention techniques. The purpose of this study is to explore how a woman living with dementia (Alzheimer’s disease) learns to use a tablet computer with support from communicative partners.

Method

The study is based on video recordings and the theoretical framework of learning as changing participation in joint activities. Quantitative and qualitative focus is on changes in the interactional organization over the course of six weeks in the activity of using an augmentative and alternative communication application.

Results

Over time, the participant living with dementia, relies less on the expertise and explicit instructions of her communicative partners when navigating the application, and more on the immediate feedback provided by the tablet computer.

Conclusions

The findings suggest that novel learning still is possible for people living with dementia, even without the implementation of focussed interventions. This study further emphasizes the procedural nature of learning for people living with dementia as the woman’s embodied actions were carried out in an increasingly more direct fashion.

Partly due to a lack of evidence-based methods to support people with intellectual disability (ID) and challenging behavior, their needs are often poorly met. One way to generate rapid evidence is to systematically describe and monitor interventions that are considered to be “good practice”—to develop evidence based on practical knowledge. This study describes the Dutch practice-based intervention Triple-C (Client, Coach, Competence). The intervention was developed in practice to support people with severe ID to borderline functioning and challenging behavior. The practice-based nature of Triple-C means that many of the professionals’ actions or activities are often underpinned by their implicit knowledge about the intervention they are delivering. Consequently, as the emphasis is on practice, the professionals can find it difficult to articulate how the intervention is operationalized and positive change achieved. This study aimed to assess the practical knowledge of Triple-C professionals and to develop an understanding of the mechanisms of change for Triple-C to improve understanding and to inform future research about the intervention. Through an iterative process, a logic model was developed to describe the intervention and its underlying assumptions. The development of the logic model was shaped using interviews with the founders, focus groups with support staff, psychologists, managers and members of the board of a service provider, and the analysis of published accounts of the Triple-C intervention. Data gathered from these sources were analyzed using content analysis. The logic model of the Triple-C intervention provides insight into the key elements of the approach, such as the need for unconditional supportive relationship and carrying out meaningful activities. Moreover, the potential relationship with existing evidence-based interventions such as Positive Behavioral Support and Active Support are described. Dening the underlying logic of a practice-based intervention like Triple-C is an important first step toward producing an evidence base for interventions developed from clinical practice.

Person-centered care (PCC) delivery and co-creation of care (establishing productive patient-professional interaction) are expected to lead to better patient outcomes. Given the prominent role of informal caregivers in care delivery processes to persons with intellectual disabilities (PWID), they are expected to benefit from person-centered care (PCC) and co-creation of care as well. This study aims to identify the relationship between PCC, co-creation of care and outcomes among informal caregivers of PWID. A cross-sectional survey was conducted in 2015 among informal caregivers of PWID (45.8% parents, 44.1% siblings, 10.1% other

family member). All PWID were living in residential homes of a long-term care organization in the Eastern part of the Netherlands. For every PWID, the most important informal caregiver was invited to participate. Nine hundred and forty-one invitations were sent out and 289 of them responded (31% response rate). Mean age of informal caregivers was 61.80 (SD 11.21; range 23–90) years old. About half of the respondents (55%) were female and 23% were single. Most of the respondents (83%) were providing informal care for more than 10 years and 29% provided informal care for 8 hours per week or more. Correlation analyses indicated that PCC and co-creation of care were positively related to informal caregivers’ satisfaction with care and their own well-being. Regression analyses showed that PCC is associated with satisfaction with care (β = 0.60, p < 0.001) and well-being (β = 0.22, p < 0.01) while controlling for background characteristics. Relational co-creation was also positively associated with satisfaction with care (β = 0.15, p < 0.01) and well-being (β = 0.20, p < 0.01). This study provided the first empirical evidence that PCC and co-creation of care matter for satisfaction with care and the well-being of informal caregivers of PWID.

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.

Purpose: This study was designed to translate and assess the psychometric properties of Supports Intensity Scale among adults with intellectual and developmental disability in Ahvaz and Tehran, Iran.

Method: The cross-sectional study was carried out in two stages. The first stage consisted of the forward-backward translation of Supports Intensity Scale - Adult Version) SIS-A(. In the second stage, 197 people with intellectual and developmental disabilities were recruited in order to assess the internal consistency and test-retest reliability, concurrent and content validity of SIS-A. The confirmatory factor analysis (CFA) was performed to approve the seven-factor model of the instrument.

Results: The intra-class correlation coefficient values varied between 0.85 and 0.99 (very good to excellent). All subscales of the SIS-A showed Cronbach’s alpha above 0.70. Correlation coefficient between SIS-A and Barthel index was about -0.65, which shows excellent concurrent validity of SIS-A. The findings showed SIS-A had high ability to discriminate between groups with different IQ (p<0.05). There was no significant correlation between SIS-A and the age of participants (p>0.05). The result of CFA confirmed that the seven-factor model of SIS-A is the fittest pattern for SIS-A.

Conclusion: The results indicated that the Persian version of SIS-A is a valid and reliable instrument to assess function and disability among people with intellectual and developmental disability.

The present article aimed to explore how the development of reading comprehension is affected when its cognitive basis is compromised. The simple view of reading was adopted as the theoretical framework. The study followed 76 children with mild intellectual disabilities (average IQ = 60.38, age 121 months) across a period of 3 years. The children were assessed for level of reading comprehension (outcome variable) and its precursors decoding and listening comprehension, in addition to linguistic skills (foundational literacy skills, rapid naming, phonological short-term memory, verbal working memory, vocabulary, and grammar) and non- linguistic skills (nonverbal reasoning and temporal processing). Reading comprehension was predicted by decoding and listening comprehension but also by foundational literacy skills and nonverbal reasoning. It is con- cluded that intellectual disabilities can affect the development of reading comprehension indirectly via linguistic skills but also directly via nonlinguis- tic nonverbal reasoning ability.