A review of measures used in the screening, assessment and diagnosis of dementia in people with an intellectual disability

McKenzie, Karen; Metcalfe, Dale; Murray, George

doi:10.1111/jar.12441

Cited by 31 publications

(64 citation statements)

References 79 publications

(122 reference statements)

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“…First, the PCFT has been developed distinctively for people with DS (Margallo‐Lana et al ., 2003), reflecting a higher risk of developing a MNCD of the Alzheimer type than for individuals with other causes of ID (British Psychological Society, 2015; Rubenstein, Hartley, & Bishop, 2020; Sinai et al ., 2017). Second, their psychometric properties have not been assessed yet nor in adult and elderly individuals with DS and in those with non‐DS ID (McKenzie, Metcalfe, & Murray, 2018).…”

Section: Discussionmentioning

confidence: 99%

“…Moderate to good and highly significant negative correlations between the s‐PCFT‐I (total score and the five subscores) and the DLD SCS indicate an acceptable level of concurrent criterion validity. This is consistent with earlier research in which other subject‐directed cognitive functioning tests such as the Severe Impairment Battery significantly correlated with the DLD SCS (McKenzie et al ., 2018). By contrast, the much weaker correlation coefficients and statistically significant only in the non‐DS subgroup, among the s‐PCFT (sub)scores and the DLD‐I SOS, likely stem from the fact that the DLD‐I SOS reflects predominantly non‐cognitive functioning.…”

Section: Discussionmentioning

confidence: 99%

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Short forms of Prudhoe Cognitive Function Test in adults and aging people with intellectual disabilities: Italian validation study

Vreese¹,

Gomiero²,

Bastiani³

et al. 2020

J intellect Disabil Res

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BackgroundWe aimed to validate the Italian version of the two parallel short forms of the Prudhoe Cognitive Function Test (s‐PCFT‐I) in adults and seniors with intellectual disabilities (ID) of any aetiology and level of severity.MethodsOur validation is a multicentre study attended by 211 subjects with ID, 125 male and 86 female, aged 40 years and above for people with Down syndrome and aged 50 years for people with other forms of disabilities.ResultsThe s‐PCFT‐I shows a wide range of scores in the absence of floor effects with minimal ceiling effects. A Cronbach's α coefficient of 0.85 and a mean inter‐item correlation of 0.21 indicate high internal consistency. The tool demonstrates good agreement between testers and near excellent temporal stability with intraclass correlation coefficients respectively of 0.85 and 0.90. s‐PCFT‐I total scores do not differ by sex or age, while statistically significant differences are observed between people with different levels of severity of ID. Moderate to good and highly significant correlations (−0.40 to −0.66) among the s‐PCFT‐I total scores and subscores and the Sum of Cognitive Score of the informant‐based Dementia Questionnaire for Persons with Intellectual Disabilities suggest an acceptable level of concurrent criterion validity. Cognitive decliners according to Prasher's Dementia Questionnaire for Persons with Intellectual Disabilities cut‐off scores perform significantly lower on s‐PCFT‐I than non‐decliners.ConclusionsThe s‐PCFT‐I has good psychometric properties and user friendliness and may therefore be a valuable addition to the current informant‐rated tools for screening and assessment of cognition in aging people with ID.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Short forms of Prudhoe Cognitive Function Test in adults and aging people with intellectual disabilities: Italian validation study

Vreese¹,

Gomiero²,

Bastiani³

et al. 2020

J intellect Disabil Res

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“…The sensitivity and specificity of the DLD were good when used with people with Down syndrome and dementia, but more variable for people with an intellectual disability and dementia who did not have Down syndrome. It was also found to have poor inter-rater reliability on some items, particularly those relating to behaviour and disturbance, although reliability was better for individuals who were less able (McKenzie et al., 2018). The reliability of the CAMCOG-DS is unknown, but it has been found to have validity as a way of measuring changes over time which are related to Alzheimer’s disease (Ball et al., 2004).…”

Section: Discussionmentioning

confidence: 99%

“…Assessing changes in cognitive and adaptive functioning relies on information being available about the person’s functioning prior to the onset of dementia. This requires the availability of appropriate assessments, suitable for individuals with an intellectual disability which have good psychometric properties and reliance on informants to provide accurate information about the person’s functioning over time, particularly for individuals with severe or profound impairments who are unable to complete direct assessments or self-report measures (see McKenzie, Metcalfe, & Murray, 2018). Furthermore, people with an intellectual disability form a heterogeneous group who vary widely in their cognitive and adaptive functioning.…”

Section: Introductionmentioning

confidence: 99%

Service provision in Scotland for people with an intellectual disability who have, or are at risk of developing, dementia

et al. 2018

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This research aimed to identify current national provision by health services in Scotland in relation to proactive screening and reactive assessment for people with an intellectual disability in Scotland who have, or are at risk of developing, dementia. Staff from 12 intellectual disability services, representing the 11 health board areas in Scotland, completed an online questionnaire which asked about proactive screening and reactive assessment for people with intellectual disability who had, or were at risk of developing, dementia as well as suggested areas for improvement. All of the areas provided services for people with intellectual disability who have, or are at risk of developing, dementia, but differed as to whether this was reactive, proactive or both. Nine services offered intervention following diagnosis. The most common elements used across both proactive screening and reactive assessment were conducting a health check, using a general dementia questionnaire designed for people with an intellectual disability and direct assessment with the person. Clinical psychology and community learning disability nurses were the professions most likely to be involved routinely in both proactive screening and reactive assessments. The psychometric properties of the most commonly used assessments of cognitive and behavioural functioning were mixed. The areas of improvement suggested by practitioners mainly related to ways of improving existing pathways. This research represents the first step in providing an overview of service provision in Scotland. There was some inconsistency in relation to the general and specific components which were involved in proactive screening and reactive assessment. Implications for service provision are discussed.

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“…Due to the pre-existing decreased cognitive abilities in the population with ID, the early detection of dementia is challenging. However, accurate screening for diagnosis of dementia is crucial in order to provide appropriate interventions, care, and support as early as possible [ 10 , 11 , 12 , 13 , 14 ].…”

Section: Introductionmentioning

confidence: 99%

Signs in People with Intellectual Disabilities: Interviews with Managers and Staff on the Identification Process of Dementia

2018

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The life expectancy of people with intellectual disabilities (ID) has steadily increased, which has been accompanied by an increased risk of dementia. Staff and managers are key resources for safety diagnosis since they deliver information about people with ID behavior every day. The aim of the present study was to explore the identification process employed by staff and managers to detect signs of suspected dementia in people with an ID within intellectual disability services (ID-services). Twenty managers and 24 staff within an ID-service were interviewed and qualitative latent content analysis was applied. A model consisting of three themes on three levels of resources for the identification process of signs of suspected dementia emerged from the analysis. On the first level was the time and continuity in the care relationship, which is crucial for identifying and responding to changes in cognitive ability that indicate dementia. On the second level, the staff identify deficiencies in their own knowledge, seek support from colleagues and managers within their workplace and, on the third level, outside their workplace. Staff and managers expressed a need for early and continuous guidance and education from specialists in dementia and primary healthcare. This finding indicates an urgent need for intervention research and digital support for staff in dementia care.

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A review of measures used in the screening, assessment and diagnosis of dementia in people with an intellectual disability

Abstract: A number of tools were found to be available for use with people with intellectual disability; however, few were specifically standardized for this purpose which also had comprehensive information about reliability and validity.

Cited by 31 publications

References 79 publications

Short forms of Prudhoe Cognitive Function Test in adults and aging people with intellectual disabilities: Italian validation study

Short forms of Prudhoe Cognitive Function Test in adults and aging people with intellectual disabilities: Italian validation study

Service provision in Scotland for people with an intellectual disability who have, or are at risk of developing, dementia

Signs in People with Intellectual Disabilities: Interviews with Managers and Staff on the Identification Process of Dementia

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