1. Setting the Scene and Posing Some Questions Dr. Maeve Murray, Senior Clinical Psychologist Cheeverstown Friday 1 st of July 2016

2. Overview Setting the Scene:  Prevalence of Dementia and ID  Posing Some Questions  What ethical considerations are there in prospective assessment?  What is truly informed consent?  When do we discuss diagnosis?  What are the challenges in assessment?  Who is best placed to do these assessments?  What does the National Dementia Strategy tell us?  Is prevention part of our role? References

3. Dementia and ID People with ID are living longer due to advances in medical care and living circumstances. In 2009 in Ireland there were 3,154 people with Intellectual Disability over the age of 55 & 10,725 over the age of 35 years. 41.1% of the total ID population was over the age of 35 (College of Psychiatrists of Ireland, 2014). Research suggests that people with ID are five times more likely to develop dementia and tend to do so at a younger age when compared with the general population (BPS, 2015; Burke, McCallion, & McCarron 2014; McCarron & Reilly, 2010; O’Caoimhe, Clune & Molloy, 2013).

4. Dementia and DS People with DS have an even greater risk and present with dementia at a younger age (BPS, 2015; McCarron & Reilly, 2010). People with Down syndrome also have an increased risk of dementia with 15 to 40% lifetime prevalence. This is due to the possession of a triple copy of Chromosome 21 (College of Psychiatrists of Ireland, 2014). 700 people with AD and DS (2013).

5. Ethicical Considerations with Prospective Assessment Sims (2002) prospective assessment involves administering baseline assessment of social and cognitive functioning before symptoms of dementia occur. Further assessment then at regular intervals. Andermann et al., (2008) WHO criteria for screening

6. Informed Consent- Option 1 1.Inform people that they are at risk on the basis that it is their right to know. For example, Coventry PCT produced this information leaflet:

8. Pros 1)It’s overt 2)Normalisation (would people in the general population only be screened for dementia if they decided they wanted to be?) Cons 1)Assessment and eventual diagnosis if it does occur takes several years – it may be very confusing to be told about something that may/may not develop for several years. 2)Anxiety provoking 3)Is it truly informed consent?

9. Informed Consent-Option 2 2. Seek consent for assessment but do not specifically mention dementia, for example:

13. Pros 1)Less anxiety provoking 2)Allows for alternative explanations to assessment results if a decline in functioning is found (e.g. physical health problem, mental health problem, mild cognitive impairment rather than dementia). 3)Is it giving information in a way people can process (not too much too soon)? Cons 1)Less overt, less clear?

14. Timing of discussion about dementia. Disclosure about diagnosis of dementia needs to be person-centred (do they want to know?). Cahill & Pierce (2013), benefits of sharing a diagnosis and practices in Ireland with general population. Discussion about Diagnosis

15. Challenges to Assessment Communication difficulties Reliance on collateral information Staff turnover Subjectivity Diagnostic Overshadowing

16. Who is Best Placed to Assess? Disability ServicesMainstream Services

17. National Dementia Strategy

18. Is prevention part of our role? Advocating for people with ID in relation to their access to factors that decrease the likelihood of onset and/or slow the progression of dementia (see Prof. Robertson’s presentation at Genio conference): – More time spent in education – Cognitively stimulating environments – Individual as opposed to congregate living environments – Empowerment (Healthy diet, regular exercise etc.)

19. References Andermann, A, Blancquaert, I.,, Beauchamp, S., Déry, V., (2008). Revisiting Wilson and Jungner in the genomic age: a review of screening criteria over the past 40 years. Bulletin of the World Health Organisation 86(4): 241- 320. Accessed from http://www.who.int/bulletin/volumes/86/4/07- 050112/en/http://www.who.int/bulletin/volumes/86/4/07- 050112/en/ British Psychological Society (BPS; 2015). Dementia and People with Intellectual Disabilities: Guidance on the Assessment, Diagnosis, Interventions and Support of People with Intellectual Disabilities who Develop Dementia. Burke, E., McCallion, P., & McCarron, M. (2014). Advancing Years, Different Challenges: Wave 2 IDS-TILDA: Findings on the Ageing of People with an Intellectual Disability. Available from: http://www.idstilda.tcd.ie/assets/pdf/Wave_2_Report_October_2014.pdf http://www.idstilda.tcd.ie/assets/pdf/Wave_2_Report_October_2014.pdf Cahill S. & Pierce, M. (2013). Briefing Paper on Dementia Diagnosis.Genio College of Psychiatrists of Ireland (2014). A Guidance Document on Dementia in Persons with Intellectual Disability Hollins, S., Attard, M.T., von Fraunhofer, N., McGuigan, S, & Sedgwick, P. (1998). Mortality in people with learning disability: Risks, causes, and death certification findings in London. Developmental Medicine and Child Neurology 40:50-56.

20. References McCarron, M. & Reilly, E. (2010). Supporting Persons with Intellectual Disability and Dementia: Quality Dementia Care Standards: A Guide to Practice. Daughters of Charity Service. Trinity College, Dublin. https://www.icgp-education.ie/dementia/resources/Dementia-and- Intellectual-Disability.pdf https://www.icgp-education.ie/dementia/resources/Dementia-and- Intellectual-Disability.pdf O’Caoimh, R., Clune, Y., & Molloy, D.M. (2013). Screening for Alzheimer’s Disease in Downs Syndrome. Journal of Alzheimer’s Disease and Parkinsonism S7:001. Robertson, I. (2015). The Brain and Environment. http://www.genio.ie/multimedia/podcasts/annual-dementia- conference-2015/podcast-the-brain-and-environment http://www.genio.ie/multimedia/podcasts/annual-dementia- conference-2015/podcast-the-brain-and-environment Sims, J. (2002). The Ethics of Prospective Assessment for Dementia in People with Down’s Syndrome. Clinical Psychology 13:30-33. The Alzheimer’s Society of Ireland (2015). A Short Guide to the National Dementia Strategy. http://alzheimer.ie/Alzheimer/media/SiteMedia/UserImages/Orchard/ ASI-NDS-4-Page-A4-(Feb-2015)-Web_3.pdf http://alzheimer.ie/Alzheimer/media/SiteMedia/UserImages/Orchard/ ASI-NDS-4-Page-A4-(Feb-2015)-Web_3.pdf

21. Thank you for listening