Skip to main content

Abstract

The emergent acknowledgement of the increase rate of dementia among adults with intellectual and developmental disability (IDD) has led to the recognition of a lifespan approach to securing and providing services with relevant supports. Consideration of what is most needed in older age has taken on more prominence. Service organizations are responding to the emergence of age-associated neuropathologies as coincident to lifelong conditions and are attempting to adapt their services for continued community care until death. The historical focus on aging among adults with IDD and the recent focus on dementia has heightened awareness of the latter age needs of adults with IDD – and in particular those at-risk of or already affected by dementia. The positive outcome of these public health initiatives is that more dementia-capable services are being developed, technologies are improving, and there is an increased interest in maintaining quality of life through to the end-of-life, irrespective of the nature and complexity of conditions prevalent in older age.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 389.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 499.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Holland A. Down’s syndrome. In: Janicki MP, Dalton AJ, editors. Dementia, aging, and intellectual disabilities. Philadelphia: Brunner-Mazel; 1999. p. 183–97.

    Google Scholar 

  2. McBrien JA, Whitwham S, Olverman K, Masters S. Screening adults with Down’s syndrome for early signs of Alzheimer’s disease. Tizard Learn Disabil Rev. 2005;10:23–32.

    Article  Google Scholar 

  3. Janicki MP, Dalton AJ. Prevalence of dementia and impact of intellectual disability services. Ment Retard. 2000;38:277–89.

    Article  Google Scholar 

  4. Ball SL, Holland AJ, Hon J, Huppert FA, Trepper P. Personality and behavior changes mark the early stages of Alzheimer’s disease in adults with Down’s syndrome: findings from a prospective population-based study. Int J Geriatr Psychiatry. 2006;21(7):661–73.

    Article  PubMed  Google Scholar 

  5. Bielecki J. The diagnosis of dementia in persons with mental retardation: validating methods of assessment. Dissertation. Baton Rouge: Louisiana State University; 2004.

    Google Scholar 

  6. Lott IT, Lai F. Dementia in Down’s syndrome: observations from a neurology clinic. Appl Res Ment Retard. 1982;3:233–9.

    Article  CAS  PubMed  Google Scholar 

  7. Jokinen J, Janicki MP, Keller SM, McCallion P, Force LT. National Task Group on Intellectual Disabilities and Dementia Practices. Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. J Policy Pract Intellect Disabil. 2013;10(1):1–28.

    Article  Google Scholar 

  8. Esralew L, Janicki MP, DiSipio M, Jokinen J, Keller SM, Members of the National Task Group Section on Early Detection and Screening. National Task Group Early Detection Screen for Dementia (NTG-EDSD) Manual. NADD Bull 2013;16(3):47–54.

    Google Scholar 

  9. Moran JA, Rafii MS, Keller SM, Singh BK, Janicki MP. The National Task Group on Intellectual Disabilities and Dementia Practices consensus recommendations for the evaluation and management of dementia in adults with intellectual disabilities. Mayo Clin Proceed. 2013;88(8):831–40.

    Article  Google Scholar 

  10. Prasher VP, Holder R, Asim F. The Adaptive Behaviour Dementia Questionnaire (ABDQ): screening questionnaire for dementia in Alzheimer’s disease in adults with Down’s syndrome. Res Dev Disabil. 2004;25(4):385–97.

    Article  CAS  PubMed  Google Scholar 

  11. Kalsy S, McQuillan S, Oliver C, Hall S. Manual for the ‘Assessment for Adults with Developmental Disabilities’ (A.A.D.S.) questionnaire. Birmingham: University of Birmingham; 2000.

    Google Scholar 

  12. Oliver C, Kalsy S, McQuillan S, Hall S. Behavioural excesses and deficits associated with dementia in adults who have Down syndrome. J Appl Res Intellect Disabil. 2011;24:208–16.

    Article  Google Scholar 

  13. Evenhuis HM. Evaluation of a screening instrument for dementia in ageing mentally retarded persons. J Intellect Disabil Res. 1992;36(4):337–47.

    Article  PubMed  Google Scholar 

  14. Evenhuis HM. Further evaluation of the Dementia Questionnaire for Persons with Mental Retardation (DMR). J Intellect Disabil Res. 1996;40(4):369–73.

    Article  PubMed  Google Scholar 

  15. Evenhuis HM, Kengen MMF, Eurlings HAL. Dementia questionnaire for people with learning disabilities (DLD). UK adaptation. San Antonio: Harcourt Assessment; 2007.

    Google Scholar 

  16. Eurlings HAL, Evenhuis HM, Kengen MMF (2006) Dementia questionnaire for people with learning disabilities. Retrieved from http://www.pearsonclinical.co.uk/Psychology/AdultCognitionNeuropsychologyandLanguage/AdultGeneralAbilities/DementiaQuestionnaireforPeoplewithLearningDisabilities(DLD).aspx

  17. Gedye A (1995) Dementia scale for down syndrome – manual. Vancouver: Gedye Research & Consulting. Retrieved from http://www.gedye.ca/

  18. Deb S, Hare M, Prior L, Bhaumik S. Dementia screening questionnaire for individuals with intellectual disabilities. Br J Psychiatry. 2007;190(5):440–4.

    Article  PubMed  Google Scholar 

  19. Kay DWK, Tyrer SP, Margallo-Lana M-L, Moore PB, Fletcher R, Berney TP, Vithayathil E. Preliminary evaluation of a scale to assess cognitive function in adults with Down’s syndrome: the Prudhoe Cognitive Function Test. J Intellect Disabil Res. 2003;47(3):155–68.

    Article  CAS  PubMed  Google Scholar 

  20. Albert M, Cohen C. The test for severe impairment: an instrument for the assessment of patients with severe cognitive dysfunction. J Am Geriatric Soc. 1992;40(5):449–53.

    Article  CAS  Google Scholar 

  21. Janicki MP, Dalton AJ. Dementia, aging, and intellectual disabilities: a handbook. Philadelphia: Brunner-Mazel; 1999.

    Google Scholar 

  22. Kondoh T, Kanno A, Itoh H, Nakashima M, Honda R, Kojima M, et al. Donepezil significantly improves abilities in daily lives of female Down syndrome patients with severe cognitive impairment: a 24-week randomized, double-blind, placebo-controlled trial. Int J Psychol Med. 2011;41(1):71–89.

    Article  Google Scholar 

  23. Prasher V. Alzheimer’s disease and dementia in Down syndrome and intellectual disabilities. Oxford: Radcliffe; 2005.

    Google Scholar 

  24. Hanney M, Prasher V, Williams N, Jones EL, Aarskand D, Corbett A, et al. Memantine for dementia in adults older than 40 years with Down’s syndrome (MEADOWS): a randomized, double-blind, placebo-controlled trial. Lancet. 2012;379(9815):528–36.

    Article  PubMed  Google Scholar 

  25. Schneider LS, Tariot PN, Dagerman KS, Neaves SM, Hsaio JK, Ismail MS, et al. CATIE-AD Study Group. Effectiveness of atypical antipsychotic drugs in patients with Alzheimer's disease. N Engl J Med. 2006;355(15):1525–38.

    Article  CAS  PubMed  Google Scholar 

  26. Holmes C, Ballard C. Aromatherapy in dementia. Adv Psychiatr Treat. 2004;10:296–300.

    Article  Google Scholar 

  27. Lawrence V, Fossey J, Ballard C, Moruz-Cook E. Improving quality of life for people with dementia in care homes: making psychosocial interventions work. Br J Psychiatry. 2012;201:344–51.

    Article  PubMed  Google Scholar 

  28. Burgio L, Sculley K, Harden M, Hsu C, Yancy J. “Environmental White Noise”: an intervention for verbally agitated nursing home residents. J Gerontol Psychol Sci. 1996;51(6):364–73.

    Article  Google Scholar 

  29. Janicki MP, Dalton AJ, McCallion P, Davies Baxley D, Zendell A. Group home care for adults with intellectual disabilities and Alzheimer’s disease. Int J Soc Res Pract. 2005;4(3):361–85.

    Google Scholar 

  30. Janicki MP. Quality outcomes in group home dementia care for adults with intellectual disabilities. J Intellect Disabil Res. 2011;55:763–76.

    Article  CAS  PubMed  Google Scholar 

  31. Janicki MP, Zendell A, DeHaven K. Coping with dementia and older families of adults with Down syndrome. Int J Soc Rres Pract. 2010;9(3):391–407.

    Google Scholar 

  32. Medicare Benefit Policy Manual. Coverage of hospice services under hospital insurance, 2012. URL: http://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/bp102c09.pdf

  33. Evenhuis H. The natural history of dementia in ageing people with intellectual disabilities. J Int Disabil Res. 1990;41:92–6.

    Article  Google Scholar 

  34. Department of Health and Human Services. National plan to address Alzheimer’s Disease. Washington, DC: DHHS; 2012.

    Google Scholar 

Download references

Acknowledgements

All of the authors are associated with the National Task Group on Intellectual Disabilities and Dementia Practices. The contents of this chapter were developed under Grant No H133B130007 awarded by the U.S. Administration for Community Living’s National Institute on Disability and Rehabilitation Research to the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago. The contents of this article do not necessarily represent the policy of the U.S. Administration for Community Living and should not be assumed as being endorsed by the U.S. Federal Government.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Seth M. Keller M.D. .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2016 Springer International Publishing Switzerland

About this chapter

Cite this chapter

Keller, S.M., Janicki, M.P., Esralew, L. (2016). Dementia: Screening, Evaluation, Diagnosis and Management. In: Rubin, I.L., Merrick, J., Greydanus, D.E., Patel, D.R. (eds) Health Care for People with Intellectual and Developmental Disabilities across the Lifespan. Springer, Cham. https://doi.org/10.1007/978-3-319-18096-0_116

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-18096-0_116

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-18095-3

  • Online ISBN: 978-3-319-18096-0

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics