People with both Intellectual Disabilities and Dementia

• Research type

  Research Study

• Full title

  People with both Intellectual Disabilities and Dementia: Exploring Holistic Care and Support

• IRAS ID

  140593

• Contact name

  Daniel Herron

• Contact email

  d.l.herron@keele.ac.uk

• Sponsor organisation

  Keele University

• Research summary

  People with intellectual disabilities (ID) have experienced a rise in life expectancy; this has resulted in increased numbers experiencing dementia. Dementia presents in a similar fashion for people with ID as it does for those without (Alzheimer’s Society, 2011), yet there are a number of differences, for instance, people with ID are at greater risk of developing dementia (Alzheimer’s Society, 2011; Cooper & Holland, 2007; Prasher, 2005).
  The impact of dementia affects whole families, including carers; however, little research has explored the needs of carers, with even less reporting on family caregiving. Research has indicated that care and services for people with both ID and dementia, and carers are poor. Recently implemented to improve this are Dementia Care Pathways (DCP); these are tools for ‘designing care processes, implementing clinical governance, streamlining delivered care, improving the quality of clinical care and ensuring the clinical care is based on the latest research’ (Vanhaecht, Panella, van Zelm, & Sermeus, 2010, p. 118). However, their implementation is relatively new and research on their use is limited.
  The current research wishes to:
  •explore the experiences and journeys of people with ID living with dementia.
  •explore the experiences and journeys of family and professional carers.
  •critically explore how DCPs and the support systems in place influence their journey, experience of holistic care and support, and how this may be best utilised.

  Method
  Participants will involve people with both ID and dementia, professional and family carers, and professionals from the DCP. They will take part in one interview each; the length of which will depend on participants. Interviews will be held in a place of their choice, or space will be available at Keele University if needed. Data will be explored using the tried and tested method of Constructivist Grounded Theory (Charmaz, 2006).

  References
  Alzheimer’s Society. (2011). Learning disabilities and dementia. Retrieved 4/1/2013, 2013, from http://www.alzheimers.org.uk/site/scripts/documents_info.php?docu mentID=103

  Cooper, S., & Holland, A. J. (2007). Dementia and mental ill-health in older people with intellectual disabilities. In N. Bouras, & G. Holt (Eds.), Psychiatric and behavioural disorders in intellectual and developmental disabilities. (2nd ed., pp. 154-172). Cambridge: Cambridge University Press.

  Prasher, V. P. (2005). In Prasher V. P., Janicki M. P. (Eds.), Alzheimer’s disease and dementia in down syndrome and intellectual disabilities / vee P. prasher ; foreword by matthew P. janicki. Oxford: Oxford : Radcliffe.

  Charmaz, K. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: Sage Publications Limited.

  Vanhaecht, K., Panella, M., van Zelm, R., & Sermeus, W. (2010). An overview on the history and concept of care pathways as complex interventions. International Journal of Care Pathways, 14(3), 117-123.

• REC name

  West Midlands - Black Country Research Ethics Committee

• REC reference

  13/WM/0513

• Date of REC Opinion

  19 Feb 2014

• REC opinion

  Further Information Favourable Opinion