I have been asked to meet with an employee in mid-50s with Down's syndrome, whose performance at work has worsened consistently over the past few months. It has been suggested that I use Addenbrooke's Cognitive Assessment. I know that early onset dementia occurs quite commonly in people with Down's, but I have been unable to find any references to ACE use in this sort of situation, so I am worried that the test might not be valid in these circumstances.
If my suspicions are correct, can anyone suggest an alternative?
Many thanks
Bw
Chris Ide
CAMCOG The Cambridge cognitive examination has been used for cognitive impairment in adults with Down syndrome (hypothyreosis goes with cognitive impairment)
Camdex-DS: The Cambridge Examination for Mental Disorders of Older People with Down's Syndrome and Others with Intellectual Disab
Even if you use the Cambridge, this referral requires something more to reach validity: a NeuroBehavioural approach depends , not on norms, but on good history-taking. Actual detailed behaviour-changes must correlate robustly with test results in order to demonstrate validity of those results. Also required is a thorough medical exam by a sympathetic physician; thyroid disorders, dehydration, PTSD, unresolved grief, medication errors, etc, can all mimic dementia.
Good idea to insist on a flexible payment fee, since assessing a Down Syndrome adult takes more than double time.
Good fortune, Psychologist Paul McGaffey
Many thanks to Beatrice, Lara and Paul (and to others) for their thoughtful advice so far. I think that I can now put forward a more coherent plan of action than I had a week ago!
Obviously, formal assessment by a competent neuropsychologist has to occur at some point, and the organisation for which I work has access to such services. I have been recommended the SQDIID questionnaire (Screening Questionnaire for Dementia for Individuals with Intellectual Disability - Deb S et al 2007), which has high inter-observer comparability, is consistent, concentrates on recent changes and is compiled by the carer, which is one way of easing the pressure on everyone involved.
it will also be important to liaise with the general practitioner, particularly with regards to some of the points that Paul raises, and to find out what plans the GP has for further management and hopefully get an agreement to share relevant data to make the most economical use of resources, ease the strain on all participants and hopefully produce a solution which will be of benefit to all involved.
Bw
Chris
Dear Christopher, please consider also the NTG-EDSD Screening Instrument, adapted from the DSQIID by the Philadelphia Coordinated Health Care Group from the DSQIID. The NTG-DST also uses comorbidity items adapted from the Longitudinal Health and Intellectual Disabilities Survey (LHIDS) developed by Rimmer and Hsieh (2012) at the University of Illinois at Chicago. Freely available at: https://aadmd.org/ntg/screening.
You can find also two recent review:
Zeilinger EL, Stiehl KAMM, Weber G. A systematic review on assessment instruments for dementia in persons with intellectual disabilities. Res Dev Disabil [Internet]. 2013 Nov;34(11):3962–77. Available from: http://dx.doi.org/10.1016/j.ridd.2013.08.013
Elliott-King J, Shaw S, Bandelow S, Devshi R, Kassam S, Hogervorst E. A critical literature review of the effectiveness of various instruments in the diagnosis of dementia in adults with intellectual disabilities. Alzheimer’s Dement Diagnosis, Assess Dis Monit [Internet]. 2016;4(June 2016):1–23. Available from: http://dx.doi.org/10.1016/j.dadm.2016.06.002
BW Tiziano
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