Consultation with people with dementia and their carers: the Northern Ireland Dementia Strategy

1. Consultation with people with dementia and their carers: the Northern Ireland Dementia Strategy Anthea Innes, Heather Sleator, Fiona Kelly, Anna Egner, and Maria McManus

2. This paper will • Outline the consultation process • Present the key findings • Discuss the implications and recommendations for developing dementia strategies

3. Consultation process • Produced an easy read version of the 107 page DHSSPS Draft Regional Strategy • Sent out in advance of consultation processes across the 5 Trusts in the region • Made available to all consultation participants

4. 10 easy read recommendations:

5. Consultation methods • Ethics approval granted by University of Stirling departmental committee • Three methods: 1-1 interviews, focus groups, open meetings • Target: • all Trust areas - achieved • hard to reach groups including, • MEG - unsuccessful • LGBT – limited success • rural areas - achieved

6. Consultation methods

7. Participation by stakeholder groups

8. Data analysis • All 1-1 interviews and 4 focus groups audio recorded and fully transcribed • Notes taken during open meetings and 1 focus group typed up • Thematic analysis based on the 10 recommendations in the easy read document • Open coding to ensure other issues raised by participants were recognised

9. Findings: what participants prioritised 1.Increased public and professional awareness of dementia 3. Good quality early diagnosis and interventions 4. Good quality information for those with dementia and their carers 7. Improved quality of care and services for people with dementia and their carers

10. 1.Increased public and professional awareness of dementia. Carer: ‘But you know what he said to me on the way out “next time you ring the doctor, ring the police first for our protection”. Well I won’t be ringing the doctor on call again you know’. (1-1 interview). Carer: ‘People are really ignorant; I was myself so I can’t say anything. And, again you know, no one tells you, no one sits down and says dementia is this and this is what it entails or these are the barriers and this is what, you know may happen or whatever. There is no education at all.’ (1-1 interview)

11. 3. Good quality early diagnosis and interventions

12. 4. Good quality information for those with dementia and their carers

13. 7. Improved quality of care and services for people with dementia and their carers

14. 8. Clear information on the delivery of the strategy.

15. To attain the aforementioned: 2. An informed and effective workforce for people with dementia. • This was mentioned by participants as a way to achieve the above prioritised objectives

16. Other issues • Complaints procedures carers reported being scared or reluctant to complain. As fear of the potential reaction paid carers may have to their relative with dementia. Even when carers have complained they reported this taking a very long time (10 months) and negligible action taken after the complaints process was followed as there was lack of availability of alternative services in their area. • Abusive practices one carer in an open meeting reported their relative in a care home saying ‘he won’t put me to bed again’ while pointing to large bruise on his arm

17. Other issues • Finance and resources “I see it very simplistically, if you take cancer, if you take Parkinson’s, take any serious illness your treatment is funded, you go into hospital, you have an operation, you get drugs. The only treatment for Alzheimer’s or dementia is care and it’s not funded, so why is the treatment for every other illness funded and the treatment for Alzheimer’s not funded?” (Focus group participant) Carer: ‘I did finally find out that I should apply for disability allowance because of the problems that we have. That was an out-and-out nightmare and that took maybe two and a half years and it took three appeals to get disability living, and I can’t tell you how emotionally draining it was and horrifically demoralising. It was dreadful.’

18. Conclusions • The consultation process revealed widespread support for many of the ideas contained in the dementia strategy for the region. • The strategy itself met with mixed responses, professionals expressed ambivalence about the strategy, in particular in relation to the finances that will support it and how it will be implemented. • Carers had mixed views about the strategy, some thought it a great start, others were more concerned about whether it would actually lead to change and improvements in dementia care.

19. Next Steps • Recommendations from our consultation have been reported to the DHSSPS • Our report, as well as the wider consultation exercise, made available 10 February 2011 on DHSSPS website • Final Northern Ireland Dementia Strategy expected to be available in 2011 http://www.dhsspsni.gov.uk/showconsultations?txtid=42566

20. Conflict of Interest DisclosureAnthea Innes, PhD. Has no real or apparent conflicts of interest to report.Heather Sleator, MSc. Has no real or apparent conflicts of interest to report.Fiona Kelly, PhD Has no real or apparent conflicts of interest to report.Anna Egner, Has no real or apparent conflicts of interest to report.Maria McManus, MSc. Has no real or apparent conflicts of interest to report.