6 th UK Dementia Congress 2012

1. 6th UK Dementia Congress 2012 DEMENTIA ADVISERS: An Evaluation of the Worcestershire Experience Jenny La Fontaine Professor Dawn Brooker Jennifer Bray Association for Dementia Studies Association for Dementia Studies

2. Aims • How the service began • The Evaluation • What does the data tell us about the role? • How do Dementia Advisers, those who use their service and those who work alongside them perceive the role • Opportunities and challenges in delivering the service Association for Dementia Studies

3. Acknowledgements • Department of Health • The Alzheimer’s Society, NHS Worcestershire and Worcestershire County Council • The Dementia Advisers, Lorrain Cullen, Patricia Spencer and Rachel Thomson and their Manager Gill Carter • The Dementia Adviser Service Implementation Group, including Dawn Brooker, Kathy Dale, David Hitchen, Kumbi Mandinyenya, Carole Edwards and Bernie Coope • All participants in the evaluation in particular the people living with dementia and their families and supporters Association for Dementia Studies

4. How the Service Began • Bid for funding for “demonstrator site” submitted to DOH in June 2009 • Collaborative project between NHS Worcestershire (Primary Care Trust), Worcestershire Health and Care NHS Trust, Joint Commissioning Unit, Alzheimer’s Society and University of Worcester • Two full-time Dementia Advisers, employed by Alzheimer’s Society, commenced in December 2009 covering 2 localities • Working alongside the Early Intervention Dementia Service Association for Dementia Studies

5. The Evaluation • Compare and contrast the impact and effect of the provision of services following diagnosis with and without a DA • Consider the experience of the DA for people living with dementia and their family/ carers • Determine the skills, facilitators and barriers to the success of the DA role • Enable commissioners to make evidence based decisions regarding the impact of such services and their ongoing financial support Association for Dementia Studies

6. The Evaluation • Dementia Adviser experience • Monthly Interviews over the life of the demonstrator project • Analysis over time to understand the experience and lessons to be learned as well as the skills and expertise needed • Experience and impact of service for People Living with Dementia and their Families • Two time points, those in receipt of DAS and those without • Measures exploring quality of life and wellbeing • Qualitative interviews Association for Dementia Studies

7. The Evaluation • Stakeholder Perspectives • Two time points • Stakeholders including members of EIDS, CMHT’s, Commissioners and Managers • Stakeholders in receipt of referrals from the DAS • Analysis of the data produced by the DAS in the client records system Association for Dementia Studies

8. Findings from the client records system Association for Dementia Studies

9. The breadth of the Dementia Adviser role • Provide information on a range of dementia-related topics • Medical • Social • Emotional • Financial • Legal • Broad knowledge required by the DA Association for Dementia Studies

10. Nature of contact with clients • DA requires strong communication skills • Phone calls (less than 20 minutes) • May be first contact with client • Often initiated by client • Meetings (around 1 hour) • More in-depth knowledge required Association for Dementia Studies

11. Who is referred? • 329 referrals in total (Jan 2010 – March 2011) • 190 for Wyre Forest • 139 for Redditch & Bromsgrove • Majority of referrals were for carers or family members • Not the intended clients Association for Dementia Studies

12. Signposting • DA needs wide knowledge base of services in their area • Created a Guidebook of services • Suitable services do not always exist Association for Dementia Studies

13. Breakdown of referrals Maternity leave • Redditch & Bromsgrove slower start • Less awareness of dementia and role of DA Association for Dementia Studies

14. Referral source • People living with dementia • EIDS & CMHT main referral source • Carers and family • Self referrals as well as EIDS & CMHT • Wide range of organisations/groups actively referring to DA service Association for Dementia Studies

15. Findings from the Qualitative Interviews Association for Dementia Studies

16. Alongside through the Journey Association for Dementia Studies

17. Assessment “You’re picking up on everything when you first meet, meet them anyway. You’re picking up on, you know, are they getting their benefits, their entitlements, have they thought about the future, where are they in their diagnosis. So it was about, you know, how they were feeling and, is there anything they’re struggling with, did they need. So I was trying, you try and pick out what it is you can help with. Are they isolated, are you looking about, you know, is this person going to benefit from some peer support, you know? Are they going to benefit from being more involved, be getting out into the community more? Is it more on a personal level? Coping strategies, is it about the memory?” Association for Dementia Studies

18. The Work of the Dementia Adviser • Accessing services “Well we feel... relieved and quite impressed that there is so much help out there” • Advanced planning “[DA] yesterday talking about the power of attorney and she was telling me what to expect with [my wife]” • Information re accessing financial support “She sent us a form actually, or got the form sent to us” Association for Dementia Studies

19. The Work of the Dementia Adviser • Information giving, relating to illness and coping • “She came out and brought me a file, a folder with lots of information about dementia and I have been on and off the phone to her actually” • Reframing • “He’ll always be your Dad, but it’s the illness that’s... Which really helped me to understand it better than ‘Oh me Dad hates me’” • Enabling identification of practical solutions Association for Dementia Studies

21. Who Receives a Service? • Family members in caring roles • The Worcestershire experience: later in the journey and impact of the illness • Dementia in a relational context • “We are ... aware of her condition, we’ve got the help that we need, which we didn’t know was even existed at one time, and we’re living with it” • “So it is still about giving his wife a break, but in a way that he was happy with; he didn’t just want to be shipped off to a day centre, it is trying to stay person centred whilst meeting different people’s needs.” Association for Dementia Studies

22. What Works? • Partnership Working • Face to face contact, and continuity • Clarity of role (and boundaries of role) • Preparation of the area and services • Being outside of statutory provision • Networking NetworkingNetworkingNetworking • Resilience Association for Dementia Studies

23. Challenges • Long lead in time (linked to preparation of the areas/ services) • Where referrals come from • The Emotional Journey • “But you know it’s never gonna be enough, and that’s the difficult part. For that very short little period, you know it is a 24/7 job. So, I think, without, probably without the skills that I learnt when I was training in my counselling, and my, my years [working in this area] and working with people with dementia and trying to understand the person, I think without that I couldn’t have done it, couldn’t have done the job”. Association for Dementia Studies

24. Challenges • Unmet Need / Services to live well with dementia • “I had a gentleman, I know they did country walks nearby, I asked him ‘do you think you would enjoy that?’ he went ‘hmmm, I might’ and I said ‘shall I ring and ask, we could look at going?’, it said it was accompanied, if he could befriend another gentleman the same age, he could enjoy that; but I rang to say could he take the dogs which are like his baby, and it was ‘no’, and I asked about it being accompanied and it was ‘well there are people at the front and there are people at the back and in the middle, to make sure nobody falls back, because it is quite abig group’ but then when I mentioned who I was she said ‘oh he’d have to be accompanied’” Association for Dementia Studies

25. Thank you for Listening! j.la.fontaine@worc.ac.uk Photographs of people living with dementia taking part in The Enriched Opportunities Programme