Diagnostic and post-diagnostic support for people with dementia and their carers in rural Scotland

1. Diagnostic and post-diagnostic support for people with dementia and their carers in rural Scotland Dr Anthea Innes and Paulina Szymczynska

2. This presentation will: • Provide a brief policy context • Present an overview of the KTP project aims and objectives • Discuss the design of the project • Present key findings from service provider, service user and family member perspectives • Discuss the ongoing redesign of dementia services in NHS Highland

3. Policy context • Primary Care Register and Annual Reviews • HEAT Target From April 2008 each NHS Board is to deliver agreed improvements in the early diagnosis and management of patients with a dementia by March 2011. Target linked to the number of people with a diagnosis of a dementia on the GP’s dementia register.

4. Mental Health Collaborative • To drive and support the delivery of the HEAT target objectives through national, regional and local approaches and systems. • Secured £9 million to 2011 to fund improvement infrastructures • Allocated funds to each NHS Board to establish local teams • National Reference Group for the Dementia work stream that has representation from a range of stakeholders • Published a toolkit (Dec 2008) to help Boards analyse their Dementia service from the perspective of those using the service.

5. Dementia Strategy • April 2008 - aim to have Scottish strategy announced. • Development work ongoing until early 2010. • Launched 1 June 2010 http://www.scotland.gov.uk/Topics/Health/health/mental-health/servicespolicy/Strategy

6. Knowledge Transfer Partnership Partners: NHS Highland and University of Stirling (DSDC) Project team: Anthea Innes, Paulina Szymczynska (DSDC) Lynda Forrest and Cameron Stark (NHS Highland) Timescale: Sept 09 – Aug 11 Funder: ESRC/NHS Highland £135,000 (administered via Momenta)

7. Rural Scotland

9. KTP Aims: • Identify and compare diagnostic processes • Identify the most efficient means of managing the diagnostic process • Establish best practice and treatment options in supporting primary care and community staff to identify dementia, and to encourage referral for early diagnosis • Redesign diagnostic process to incorporate identified learning • Identify best practice in post-diagnosis support, and use the capacity freed by the re-design process to meet this need

10. Project design: • Best practice review • Questionnaires sent to Community Mental Health Teams across NHS Highland • Interviews with service users (people with dementia and caregivers) • Observation of service delivery • Participation in local decision making forum http://dementia.stir.ac.uk/files/BestPracticeReviewDiagnosisAndPostdiagnosticServiceProvision.pdf

11. Findings: • Best practice review • Staff questionnaire • Service user and carer interviews • Observation of service delivery (ongoing) • Service redesign (ongoing)

12. 1. Best practice review • Changes in dementia diagnosis, including nurse-led diagnosis, education, and a uniform diagnostic process, could improve early dementia recognition and effective care management. • Memory clinics have the potential to offer person-centred, accessible diagnostic and post-diagnostic services, especially in rural areas. • Community care services play key role in the provision of post-diagnostic support and have shown considerable development of innovative approaches to care delivery Szymczynska. P. Innes, A., Stark, C and Mason, A. (accepted and forthcoming) A review of diagnostic process and post-diagnostic support for people with dementia in rural areas Journal of Primary Care and Community Health

13. 2. Staff questionnaire • Conducted between April – September 2010 • 10/13 surveys completed (77% response rate) • Aim: Collect information about service structure and staff perception of opportunities and challenges of dementia care provision across NHS Highland

14. Staff questionnaire findings • All teams had Community Psychiatric Nurse services and this comprised the greatest community support service available in each locality • On average 64.5% of CPN’s workload was for dementia cases • 4 of the 6 teams had an Occupational Therapist service and dementia accounted for 64% of their workload • Referrals to local services came mainly from GP’s and Social workers. Memory clinics also made referrals. • 3 localities reported waiting times for services but did not have detail of length of wait time

15. Services available:

16. Reported education and training needs • Need for education and support courses for people with dementia and carers • Need for specialist teams dedicated to dementia • NB. Evaluation of staff training provided to date as part of the KTP reveals a shortfall in dementia specific training for staff

17. Communication and access to services • Staff reported a: • Need for joint/multi-agency working • Need for minimised bureaucracy • Need for improved information sharing (IT systems, communication) “At the moment  it is based on individuals’ personalities rather than what should be done as best practice.” (Team Leader)  “Increase availability of services to enable people with dementia to remain at home as long as they wish to.” (CPN)

18. Reported Challenges • Limited financial and staff resources • Limited transport • Centralised specialist services are difficult to access • Increasing ageing population in the region • Achieving equity in service provision • Stigma and poor awareness of dementia within communities • Different team structures in different areas in same NHS board

19. 3. 1-1 Interviews with service users and carers • Participants (n=20): • People with dementia (n=7) • Carers (n=13) • 3 topics explored: • Early diagnosis and intervention • Availability and accessibility of information • Post-diagnostic support

20. Early diagnosis and intervention • Service users want: • Proactive involvement of service providers with service users • Experiences varied: • “Because if [the nurse] hadn’t picked that up, and we’d progressed from here (…) my life would be absolutely miserable.” (carer) • Less positive experiences: • “You don’t think there’s anything out there for you and that’s the problem” (carer) • “When you went to the doctors, they certainly never give you an indication that there was people out there that helped…” (carer)

21. Early diagnosis and intervention • Service users want: • A timely diagnosis • “So I would say that it was about a year it took (…) from the first visit to the doctors (…) Well, I thought it would have been a wee bit quicker…” (carer) • “It was very quickly done. Very, very quickly done.” (carer) • “So I would say we had a diagnosis was in the month of setting the ball running, you know?” (carer)

22. Early diagnosis and intervention • Service users want: • Disclosure of the diagnosis and prognosis • “We’ve never been diagnosed. But I know what it is.” (carer) • “we actually weren’t told, she was in hospital at the time (…) it was written on the chart and that was the first we ever heard.” (carer) • “I mean I’ve asked the really difficult ones, I’ve said, ‘what’s the prognosis?’ Which is very difficult, almost impossible, but I’ve asked the question, and it’s been answered as best they could, I felt sure. So from my point of view I think that’s great.” (person with dementia)

23. Early diagnosis and intervention • Service users want: • More information provided at diagnosis • “Not at the point where I was diagnosed, nothing was explained.” (person with dementia) • “I would say that it would be beneficial for somebody to be able to give you some insight into what dementia was and that’s probably the most important thing” (carer) • “Doctor (…) explained, you know, that it was Alzheimer’s and that this was different from the dementia. Seemingly, it’s in all different parts, which is kind of difficult to understand” (carer)

24. Early diagnosis and intervention • Service users want: • Information about help and support available and appropriate referrals • “I can’t understand why they won’t tell you what you’re entitled [to](…) I think there should someone there that’lll tell you right, you’re entitled to attendance allowance…” (carer) • “anything that I’ve found out, anything that I was entitled to, I’ve had to find out myself” (carer)

25. Availability and accessibility of information • Common sources of information: • internet, carer centres, GP, CPNs, publications • “My daughter’s big on that [Internet]. And I tend to take her example now and look up everything.” (carer) • “The carer’s centre would tell you everything and they’ve got all the leaflets, all the bumphf, all everything.” (carer) • “I mean, they just tell you that things are available while you’re waiting [in the GP surgery].” (carer)

26. Availability and accessibility of information • Service users want: • personal touch, appropriate format, explanation at diagnosis, follow-up contact • “The written form is difficult for me” (person with dementia) • “The psychiatric nurse comes, she always has excellent advice” (carer) • “I think probably if you have got somebody that you can call. I think that is…the personal touch is always better …” (carer)

27. Post-diagnostic support • Positive perceptions of services • “But the service that we’ve had since the diagnosis has been absolutely superb” (carer) • “I reckon I had a lot of support so I’m not complaining about the support. And the medical services were great.“ (carer) • “The support we have is quite ample and we’re very grateful for it, the nurses are very good and the carers are excellent.” (carer) • “But that as a patient actually makes you feel better, when people treat you that way instead of just that lump of meat sat in the corner.” (person with dementia)

28. Post-diagnostic support • GP support: • “I mean, we have a very good doctor, two doctors in the practice, if [Anne] has any needs, we pop over and see them” (carer) • “We’re very, very pleased that since we’ve come here our GP’s extremely open at my request. (person with dementia)“ • “He saw a GP and he tested him on a few things and he says; yes, make another appointment to see us, make it a double appointment so that I can go through the different tests with him” (carer)

29. Post-diagnostic support • CPN support: • “The other thing I would say is [the dementia nurse] was wonderful” (carer) • “[The CPN] is the only one that you could rely on” (carer) • “I think nurses are doing a great job. Amazing.” (carer) • “When the nurse… the psychiatric nurse comes, she always has excellent advice.” (carer) • “I feel [the CPN] really knows us, knows all our situation and I know that if I’ve got a real problem (…) she’ll get straight back to me and I’ve got, well, we’ve both got every faith in her, haven’t we?” (carer)

30. Post-diagnostic support • Limited availability and accessibility of support for people with dementia • “I feel it’s a pity that she doesn’t go out a bit more, you know (…) more stimulation.” (carer) • “There is, obviously, a need there for maybe people with more advanced [stages]” (carer) • “There’s nothing available really, no, there’s nothing about, I mean if there was somewhere for him to go every day I would certainly feel he would benefit from it, because they have different activities” (carer)

31. Post-diagnostic support • Understandings of the service limitations and lack of resources • “You feel as if you’re a burden. [The CPN] has got enough on her plate without this extra…” (carer) • “She [CPN] has said, you know, would she come every month, and I thought, ‘Well no’, because I know she’s got a lot to do.” (carer) • “If you had the same person each time you visit, but I suppose we should be thankful that we have the facility in place that we’ve got a psychiatrist and…” (carer)

32. 4. Observation of service delivery • Visits to memory services: observation of clinic functions, discussions with clinicians and patients • Shadowing exercise with community clinicians and in-patient services (underway). - evaluation of staff views on service redesign - user views of service structures This will help ascertain the success of some of the redesign measures introduced to date.

33. 5. Redesign of services • Development of Highland wide memory clinic protocol: 4 clinics across the region operating in different ways but to same standards • Introduction of nurse-led memory service in one area of Highland • Redesign of older adult services in one team following investigation into service delivery model. Staff redeployed so more time allocated to older adult services.

34. Redesign of services in development: Planned and under development: Integration of health and social services, proposed model is for NHS Highland to lead adult community care services. This is independent of the KTP but sets out a different agenda for the future.

35. Conclusions: • CPN main source of local support (and GP) • Varied experiences of diagnosis (detection, process, time scales) • Varied experiences of referral and post-diagnostic support • Different models evolving to address local context but with same standards expected • Challenges recognised by all but good ideas for improvement could be harnessed and will be captured within KTP report due August 2011.

36. Thanks to the staff who completed the questionnaire and to the people with dementia and their families for participating in the interviews.

37. Conflict of Interest DisclosureAnthea Innes, PhD. has no real or apparent conflicts of interest to report.Paulina Szymczynska, MA. has no real or apparent conflicts of interest to report.