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Dementia Screening Questionnaire for Individuals with Intellectual Disabilities

  • Shoumitro Deb (a1), Monika Hare (a2), Lindsay Prior (a3) and Sabyasachi Bhaumik (a4)
Abstract
Background

Many adults with Down's syndrome develop Alzheimer's dementia relatively early in their lives, but accurate clinical diagnosis remains difficult.

Aims

To develop a user-friendly observer-rated dementia screening questionnaire with strong psychometric properties for adults with intellectual disabilities.

Method

We used qualitative methods to gather information from carers of people with Down's syndrome about the symptoms of dementia. This provided the items for the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID), which we then tested for its psychometric properties.

Results

The DSQIID was administered to carers of 193 adults with Down's syndrome, 117 of whom were examined by clinicians who confirmed a diagnosis of dementia for 49 according to modified ICD–10 criteria. We established that a total score of 20 provides maximum sensitivity (0.92) and optimum specificity (0.97) for screening. The DSQIID has sound internal consistency (α = 0.91) for all its 53 items, and good test–retest and interrater reliability. We established a good construct validity by dividing the items into four factors.

Conclusions

The DSQIID is a valid, reliable and user-friendly observer-rated questionnaire for screening for dementia among adults with Down's syndrome.

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Copyright
Corresponding author
Professor Shoumitro Deb, Division of Neuroscience, Department of Psychiatry, Queen Elizabeth Psychiatric Hospital, Mindelsohn Way, Birmingham B15 2QZ, UK. Email: s.deb@bham.ac.uk
Footnotes
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Declaration of interest

None. Funding detailed in Acknowledgements.

Footnotes
References
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Aylward, E. H., Burt, D. B., Thorpe, L. U., et al (1997) Diagnosis of dementia in individuals with intellectual disability. Journal of Intellectual Disability Research, 41, 152164.
Deb, S. & Braganza, J. (1999) Comparison of rating scales for the diagnosis of dementia in adults with Down's syndrome. Journal of Intellectual Disability Research, 43, 400407.
Deb, S., Braganza, J., Norton, N., et al (2000) APOE ∊4 influences the manifestation of Alzheimer's disease in adults with Down's syndrome. British Journal of Psychiatry, 176, 468472.
Deb, S., de Silva, P. N., Gemmell, H. G., et al (1992) Alzheimer's disease in adults with Down's syndrome: the relationship between regional blood flow deficits and dementia. Acta Psychiatrica Scandinavica, 86, 340345.
Deb, S., Hare, M. & Prior, L. (2007) Symptoms of dementia among adults with Down's syndrome: a qualitative study. Journal of Intellectual Disability Research, in press.
Evenhuis, H. M. (1992) Evaluation of a screening instrument for dementia in ageing mentally retarded persons. Journal of Intellectual Disability Research, 36, 337447.
Evenhuis, H. M. (1996) Further evaluation of the Dementia Questionnaire for Persons with Mental Retardation. Journal of Intellectual Disability Research, 40, 369373.
Field, A. (2005) Discovering Statistics using SPSS for Windows. Sage Publications.
Folstein, M. F., Folstein, S. E. & McHugh, P. R. (1975) ‘Mini-Mental state’. A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189198.
Gedye, A. (1995) Dementia Scale for Down Syndrome. Gedye Research & Consulting. http://www.gedye.ca
Mann, D. M. A. (1988) Alzheimer's disease and Down's syndrome. Histopathology, 13, 125137.
Prasher, V. P. (1995) Age-specific prevalence, thyroid dysfunction and depressive symptomatology in adults with Down's syndrome and dementia. International Journal of Geriatric Psychiatry, 10, 2531.
Streiner, D. L. & Norman, G. R. (1999) Health Measurement Scales: A Practical Guide to Their Development and Use. Oxford University Press.
World Health Organization (1992) The ICD-10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines. WHO.
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The British Journal of Psychiatry
  • ISSN: 0007-1250
  • EISSN: 1472-1465
  • URL: /core/journals/the-british-journal-of-psychiatry
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Dementia Screening Questionnaire for Individuals with Intellectual Disabilities

  • Shoumitro Deb (a1), Monika Hare (a2), Lindsay Prior (a3) and Sabyasachi Bhaumik (a4)
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eLetters

An inteteresting paper but a misleading title!

Sowmya Krishna, ST3 in Learning Disabilities
28 November 2007

We read with interest the paper by Deb et al (2007)on dementia screening in patients with learning disabilities. However, we have found the title of the article rather misleading!. Whilst the paper refers to adementia Screening questionnaire for Individuals with Intellectual Disabilities, the sample consisted only of patients with Down’s syndrome.It is rather difficult to understand as to why the authors did not simply use a more descriptive title such as ' A dementia for individuals with Down's syndrome' which would have been more appropriate and accurate. A previous study which compared presentation of dementia in people with Down’s syndrome and learning disabilities of other aetiologies. The findings of this study suggest that dementia presentation differs in thosewith and without this syndrome Cooper & Prasher 1998). It would be indeed interesting to see whether the screening tool used in the study will have the same sensitivity and specificity as reported in the Down's syndrome sample.

Declaration of interest – none

Reference:

Cooper, S. A. & Prasher, V. P. (1998) Maladaptive behaviours and symptoms of dementia in adults with Down’s syndrome compared with adults with intellectual disability of other aetiologies. Journal of IntellectualDisability Research, 42, 293 –300.
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Conflict of interest: None Declared

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Wael M. M. R. I. Foad, SHO in Learning Disabilities.
29 May 2007

Dear Editors,

Shoumitro Deb and colleagues developed a dementia screening questionnaire, through an observer-rated questionnaire, based on behavioural rating scale of individuals with intellectual disabilities dueto Down’s syndrome. As acknowledged in the article, dementia is hard to determine in people with intellectual disabilities. Diagnosis remains essentially a clinical one, based on individual loss of skills and deterioration in memory, and in the absence of mental illness or organic cause accounting for the psycho-pathology. DC-LD (Royal College of Psychiatrists, 2001) presents diagnostic criteria for dementia specifically designed for this population. In November 2006, and in their first collaboration, the National Institute for Health and Clinical Excellence (NICE) and the Social Care Institute for Excellence (SCIE) issued their first joint guidelines, and this was on dementia. They recommended the use of tools to assess the severity of dementia in people with Learning disabilities which should be sensitive to their level of competence. This obviously predates the publication of the questionnaire in hand, and the tools recommended are:•Cambridge Cognitive Examination.•Modified Cambridge Examination for for Mental disorders of the Elderly.•DMR (Dementia Questionnaire for persons with Mental Retardation- Evenhuis, 1992).•Dementia Scale for Down Syndrome (DSDS).

Reference:1-NICE-SCIE guidelines on Dementia- November 2006.2-College Seminars in the psychiatry of learning disabilities- second edition.

Declaration of interest-none

Dr Wael Foad. MB ChB, MRCPsych part 1. Senior House Officer, LearningDisabilities. 20 Crosby Road North, Liverpool L22 4QF. Telephone: 01519284107. Fax: 0151 928 6590.
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Conflict of interest: None Declared

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