References
- Aguirre, E., Woods, R. T., Spector, A., & Orrell, M. (2013). Cognitive stimulation for dementia: A systematic review of the evidence of effectiveness from randomised controlled trials. Ageing Research Reviews, 12(1), 253–262. doi:https://doi.org/10.1016/j.arr.2012.07.001
- Ali, A., Brown, E., Spector, A., Aguirre, E., & Hassiotis, A. (2018). Individual cognitive stimulation therapy for people with intellectual disability and dementia: Protocol of a feasibility randomised controlled trial. BMJ Open, 2018; 8(12), e022136 doi:https://doi.org/10.1136/bmjopen-2018-022136
- American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Association
- Ball, S., Holland, T., & Huppert, F. A. (2006). CAMDEX-DS: The Cambridge Examination for mental disorders of older people with Down's syndrome and others with intellectual disabilities (Vol. 1). Cambridge: Cambridge University Press.
- The British Psychological Society and the Royal College of Psychiatrists. (2015). Dementia and People with intellectual disabilities. Guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia. (Retrieved from: https://www.bps.org.uk/sites/www.bps.org.uk/files/Member%20Networks/Faculties/Intellectual%20Disabilities/Dementia%20and%20People%20with%20Learning%20Disabilities%20%282015%29.pdf. )
- Carey, I. M., Hosking, F. J., Harris, T., Dewilde, S., Beighton, C., & Cook, D. G. (2017). An evaluation of the effectiveness of annual health checks and quality of healthcare for adults with intellectual disability: An observational study using a primary care database. Health Services and Delivery Research, 5(25), 1–170. doi:https://doi.org/10.3310/hsdr05250
- Cleary, J., & Doody, O. (2017). Professional carers’ experiences of caring for individuals with intellectual disability and dementia: A review of the literature. Journal of Intellectual Disabilities: Joid, 21 (1), 68–86. doi:https://doi.org/10.1177/1744629516638245
- Emerson, E., Hatton, C., Robertson, J., Roberts, H., Baines, S., & Glover, G. (2010). People with learning disabilities in England 2010: Services and supports. Improving Health and Lives Learning Disability Observatory. Retrieved from.http://www.improvinghealthandlives.org.uk/uploads/doc/vid_9244_IHAL2011-02PWLD2010.pdf.
- Galasko, D., Bennett, D., Sano, M., Ernesto, C., Thomas, R., Grundman, M., & Ferris, S. (1997). An Inventory to assess activities of daily living for clinical trials in Alzheimer's disease. Alzheimer Disease and Associated Disorders, 11(Suppl 2), S33–S39.
- Gibbor, L., Forde, L., Yates, L., Orfanos, S., Komodromos, C., Page, H., …Spector, A. (2020). A feasibility randomised control trial of individual cognitive stimulation therapy for dementia: Impact on cognition, quality of life and positive psychology. Aging & Mental Health, (published online).doi: https://doi.org/10.1080/13607863.2020.1747048
- Hithersay, R., Startin, C. M., Hamburg, S., Mok, K. Y., Hardy, J., Fisher, E. M. C., … Strydom, A. (2019). Association of dementia with mortality among adults with Down Syndrome older than 35 years. JAMA Neurology, 76(2), 152–160. doi:https://doi.org/10.1001/jamaneurol.2018.3616
- Macera, C. A., Eaker, E. D., Jannarone, R. J., Davis, D. R., & Stoskopf, C. H. (1993). A Measure of perceived burden among caregivers. Evaluation & the Health Professions, 16 (2), 204–211. doi:https://doi.org/10.1177/016327879301600205
- McCarron, M., McCallion, P., Reilly, E., Dunne, P., Carroll, R., & Mulryan, N. (2017). A prospective 20-year longitudinal follow-up of dementia in persons with Down syndrome. Journal of Intellectual Disability Research: JIDR, 61(9), 843–852. doi:https://doi.org/10.1111/jir.12390
- McGlinchey, E., McCarron, M., Holland, A., & McCallion, P. (2019). Examining the effects of computerised cognitive training on levels of executive function in adults with Down syndrome. Journal of Intellectual Disabilities Research, 63 (9), 1137–1150.
- Moore, G. F., Audrey, S., Barker, M., Bond, L., Bonell, C., Hardeman, W., … Baird, J. (2015). Process Evaluation of complex interventions: Medical Research Council Guidance. BMJ (Clinical Research ed.).), 350, h1258 doi:https://doi.org/10.1136/bmj.h1258
- National Institute for Health and Clinical Excellence. (2018a). Dementia Assessment, management and support for people living with dementia and their carers (NICE guideline NG 97), NICE. Retrieved from https://www.nice.org.uk/guidance/ng97.
- National Institute for Health and Care Excellence. (2018b). Care and support of people growing older with learning disabilities (NG96). Retrieved from: https://www.nice.org.uk/guidance/ng96.
- National Institute for Health and Care Excellence (2016). Mental health problems in people with learning disabilities: Prevention, assessment and management (NICE guideline NG 54). NICE. Retrieved from: https://www.nice.org.uk/guidanceng54. )
- National Institute of Health Research (NIHR) (2017). Guidance on applying for feasibility studies. Accessed from: https://www.nihr.ac.uk/documents/nihr-research-for-patient-benefit-rfpb-programme-guidance-on-applying-for-feasibility-studies/20474?pr=.
- Oliver, C., Crayton, L., Holland, A., Hall, S., & Bradbury, J. (1998). A four year prospective study of age-related cognitive change in adults with Down's syndrome. Psychological Medicine, 28(6), 1365–1377. doi:https://doi.org/10.1017/s0033291798007417
- Onder, G., Zanetti, O., Giacobini, E., Frisoni, G. B., Bartorelli, L., Carbone, G., … Bernabei, R. (2005). Reality orientation therapy combined with cholinesterase inhibitors in Alzheimer’s disease: Randomised controlled trial. British Journal of Psychiatry, 187(5), 450–455. doi:https://doi.org/10.1192/bjp.187.5.450
- Orrell, M., Yates, L., Leung, P., Kang, S., Hoare, Z., Whitaker, C., … Orgeta, V. (2017). The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial. PLoS Medicine, 14(3), e1002269 doi:https://doi.org/10.1371/journal.pmed.1002269
- Patja, K., Iivanainen, M., Vesala, H., Oksanen, H., & Ruoppila, I. (2000). Life expectancy of people with intellectual disability: A 35‐year follow‐up study. Journal of Intellectual Disability Research, 2000; 44 (5), 591–599. doi:https://doi.org/10.1046/j.1365-2788.2000.00280.x
- Schepers, A. K., Orrell, M., Shanahan, N., & Spector, A. (2012). Sense of competence in Dementia Care Staff (SCIDS) scale: Development, reliability, and validity. International Psychogeriatrics, 24(7), 1153–1162. doi:https://doi.org/10.1017/S104161021100247X
- Shanahan, S. F. (2014). Efficacy of a cognitive stimulation therapy programme with adults with Down syndrome: a randomised study (D.Clin.Psych Thesis). Retrieved from: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.617081
- Siberski, J., Shatil, E., Siberski, C., Eckroth-Bucher, M., French, A., Horton, S., … Rouse, P. (2015). Computer-based cognitive training for individuals with intellectual and developmental disabilities: Pilot study. American Journal of Alzheimer's Disease and Other Dementias, 30(1), 41–48. doi:https://doi.org/10.1177/1533317514539376
- Startin, C. M., Rodger, E., Fodor-Wynne, L., Hamburg, S., & Strydom, A. (2016). Developing an informant questionnaire for cognitive abilities in Down Syndrome: The Cognitive Scale for Down Syndrome (CS-DS). PLoS One, 11(5), e0154596 doi:https://doi.org/10.1371/journal.pone.0154596
- Stewart, D. B., Berg-Weger, M., Tebb, S., Sakamoto, M., Roselle, K., Downing, L., … Hayden, D. (2017). Making a difference: A study of cognitive stimulation therapy for persons with dementia. Journal of Gerontological Social Work, 60(4), 300–312. doi:https://doi.org/10.1080/01634372.2017.1318196
- Strydom, A., Chan, T., King, M., Hassiotis, A., & Livingston, G. (2013). Incidence of dementia in older adults with intellectual disabilities. Research in Developmental Disabilities, 34(6), 1881–1885. doi:https://doi.org/10.1016/j.ridd.2013.02.021
- Strydom, A., Livingston, G., King, M., & Hassiotis, A. (2007). Prevalence of dementia in intellectual disability using different diagnostic criteria. British Journal of Psychiatry, 191(2), 150–157. doi:https://doi.org/10.1192/bjp.bp.106.028845
- Thorgrimsen, L., Selwood, A., Spector, A., Royan, L., de Madariaga Lopez, M., Woods, R. T., & Orrell, M. (2003). Whose quality of life is it anyway? The validity and reliability of the Quality of life-Alzheimer's Disease (QOL-AD) scale. Alzheimer Disease and Associated Disorders, 17(4), 201–208. doi:https://doi.org/10.1097/00002093-200310000-00002
- Woods, B., Aguirre, E., Spector, A. E., & Orell, M. (2012). Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Database of Systematic Reviews, 2, CD005562.
- Yates, L., Orrell, M., Leung, P., Spector, A., Woods, B., & Orgeta, V. (2014). Making a difference 3: individual cognitive stimulation therapy: a manual for carers. London: Hawker Publications.
- Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67(6), 361–370. doi:https://doi.org/10.1111/j.1600-0447.1983.tb09716.x