Dementia in People with Intellectual Disabilities

Deb, Shoumitro; Strydom, André; Hithersay, Rosalyn; Gomiero, Tiziano; Vreese, Luc Pieter De; Janicki, Matthew P.; Jokinen, Nancy; Service, Kathryn P.

doi:10.1007/978-3-319-95720-3_28

Cited by 2 publications

(1 citation statement)

References 181 publications

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“…Changes in daily abilities, in the absence of new-onset organic or mental health problems associated with an incipient cognitive decline, may predict dementia (Deb et al 2022); since the AILMS is focused on assessing advanced instrumental activities and high order executive functioning, then it may be more sensitive to detecting early changes compared with other informant-rated scales that assess changes in more simple or basic daily abilities, such as the DMR-I (De Vreese et al 2007) and DSQIID-I (Gomiero et al 2017). Future longitudinal studies are required to determine the usefulness of the AILMS to assess dementia-related functional decline in adults or seniors with IDD.…”

Section: Future Use and Other Applications Of The Ailmsmentioning

confidence: 99%

Adult Independence Living Measurement Scale: Psychometric validation of a scale to estimate personal skills for independent living in people with intellectual and developmental disabilities

Zorzi

Dalmonego²,

Vreese³

et al. 2023

J intellect Disabil Res

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BackgroundThe United Nations has declared that people with disabilities should be enabled to live as independently as possible, since independence is correlated with a better quality of life. Consequently, services need to have common and validated measurement tools for the evaluation of the different levels of personal support needs in order to promote independent living skills. We aimed to create and validate the Adult Independence Living Measurement Scale (AILMS) to estimate personal skills considered tantamount for independent living in adult persons with intellectual and developmental disabilities. Methods AILMS is a short informant-rated assessment tool consisting of 19 items (goals) regarding the most important skills related to independent living. AILMS total score is directly proportional to the degree of independence, with scores ranging from 19 to 76. Our validation is a multicentre study attended by 243 subjects, 110 female and 123 males, with a median age of 37 years and with an interquartile range (IQR) of 18 (25th percentile [Q1] 29 years to 75th percentile [Q3] 47 years). All subjects had a diagnosis of intellectual disability associated with various neurodevelopmental disorders or syndromic conditions. ResultsThe AILMS shows a wide range of scores with a minimum score of 21 and a maximum of 72. We found no floor or ceiling effects for the total score on the AILMS. Cronbach's α coefficient (= 0.95), based on the 19 AILMS items, indicated high internal consistency. The tool demonstrates a very good agreement even when comparing the results submitted by two different interviewers. It also shows an excellent temporal stability of 1 week, with intraclass correlation coefficients both of 0.97. AILMS total scores do not differ by sex or age, while statistically significant differences are observed between people with different levels of severity of ID. Convergent validity of AILMS was analysed by correlating its total scores with the Italian validated versions of the Support Intensity Scale (SIS-I) and the Alzheimer's Functional Assessment Tool (AFAST-I) scores. Strong inverse Spearman correlations coefficients (r s ) were found both for the Support 560

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Section: Future Use and Other Applications Of The Ailmsmentioning

confidence: 99%

Adult Independence Living Measurement Scale: Psychometric validation of a scale to estimate personal skills for independent living in people with intellectual and developmental disabilities

Zorzi

Dalmonego²,

Vreese³

et al. 2023

J intellect Disabil Res

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Validation of a German version of the dementia screening questionnaire for individuals with intellectual disabilities (DSQIID‐G) in Down's syndrome

Nuebling,

Wagemann,

Deb

et al. 2024

J intellect Disabil Res

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BackgroundPeople with Down's syndrome (DS) are at high risk of developing Alzheimer dementia (DS‐AD) due to a triplication of the amyloid precursor protein gene. While several tools to diagnose and screen for DS‐AD, such as the dementia screening questionnaire for individuals with intellectual disabilities (DSQIID), are available in English, validated German versions of such instruments are scarce.MethodsA German version of the DSQIID questionnaire (DSQIID‐G) was completed by caregivers before attending our specialist outpatient department for DS‐AD. All participants were assessed blind to DSQIID‐G scoring using clinical and neuropsychological examinations, including the Cambridge Examination for Mental Disorders of Older People with Down's Syndrome and Others with Intellectual Disabilities (CAMDEX‐DS). ICD‐10 and amyloid/tau/neurodegeneration (A/T/N) criteria were applied to detect and categorise cognitive decline.ResultsOf 86 participants, 43 (50%) showed evidence of cognitive decline. A definite diagnosis of DS‐AD was reached in 17 (19.8%) and mild cognitive impairment in seven (8.3%) participants. Secondary causes of cognitive decline were determined among 13 (15.1%) participants, and in six (7%) cases, the diagnosis remained unclassifiable due to co‐morbidities. Compared with cognitively stable individuals, participants with cognitive decline (n = 43) displayed higher DSQIID‐G total scores [median (range): 3 (0–21) vs. 19 (0–48), P < 0.001]. A total score of >7 provided a sensitivity of 0.94 against a specificity of 0.76, to discriminate DS‐AD and participants without cognitive decline according to ROC analysis. The convergent validity against the CAMDEX‐DS interview score was good (r = 0.74), and split‐half reliability (r = 0.96), internal consistency (Cronbach's α r = 0.96), test–retest reliability (r = 0.88) (n = 25) and interrater reliability (r = 0.81) (n = 31) were excellent.ConclusionsThe DSQIID‐G showed excellent psychometric properties, including concurrent and internal validity and reliability. The cut‐off value for screening was lower than in the original English validation study. For a screening instrument like DSQIID‐G, a lower cut‐off is preferable to increase case detection.

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Dementia in People with Intellectual Disabilities

Cited by 2 publications

References 181 publications

Adult Independence Living Measurement Scale: Psychometric validation of a scale to estimate personal skills for independent living in people with intellectual and developmental disabilities

Adult Independence Living Measurement Scale: Psychometric validation of a scale to estimate personal skills for independent living in people with intellectual and developmental disabilities

Validation of a German version of the dementia screening questionnaire for individuals with intellectual disabilities (DSQIID‐G) in Down's syndrome

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