Dementia Services

1. Dementia Services David Storm Clinical Lead: Dementia Pathways

2. Memory matters Draw a penny Heads side Tails side From memory of this common object-try and think of as many details as you can

3. 1. Port Cullis 2. Crown 3. Chains 4. One Penny (words 5. 1 1. Queens Head 2.Elizabeth 3. Crown 4. Queen Facing Right 5. Elizabeth (words) 6. 11 (second) 7. Regina 8. DG 9. FD 10. Year

4. Memory matters Dementia Services within Cumbria: Key areas of development and quality

5. Memory matters Working together to improve quality of life • Quality of life central to improving health and well being • What really matters to people with dementia and their carers • Particularly important in dementia • Need to focus on PERSON not symptoms • Need to focus on Family and their well being- not ill being in isolation

6. Memory matters Key issues to be addressed from events and evidence • Need for improved early recognition, referral and diagnosis • Challenges of service provision in rural settings • Need to meet carer needs • Need to meet psychosocial family intervention • Need to improve collaboration with other services • Reduce reliance on anti-psychotic medication • Only 15-20% of people with dementia receive any specialist health care assessment • 40-50% of people with dementia may come into contact with social care - late and in crisis • Prof. S Banerjee, Professor of Mental Health and Ageing, King’s College London 2008

7. Memory matters • Cumbria: Dementia Strategy • Development of Care Pathway to improve equity of services across Cumbria • Improve education and awareness- reducing stigma • Improve environments- home and care home • Promote joint working

8. Memory matters • Early recognition: • Cumbria currently 9th in UK out of 153 trusts (51%) • Expected large numbers of undiagnosed people with care homes • Need to improve training to GPs and health staff • Promote early referral Dementia strategy work- GP training Training to practice nurses, community hospital and community nurses

9. Memory matters • Able to meet need of both urban and rural settings • Reduce waiting time from referral to diagnosis • Improve access to a range of flexible, specialist assessments, interventions and support- this tailored to individual need • Improve integrated approach with proactive early recognition training, improving access to specialist assessment and intervention services- enabling grater collaborative work with GPs, Primary Care and Community Services • Ensure memory assessment available to evidence based ‘standard’- irrespective of setting-enables local variations to suit need • Ensure access to carer interventions (psycho-social) • Introduce concept of ‘family interventions’ with person at centre of care, Encouraging positive actions and carer intervention throughout process • Enable greater collaborative work-in particular with GPs and Primary Care

10. Memory matters Understanding quality of life in dementia

11. How I am Seen By Others And Understand Myself Before Being Diagnosed with Dementia self Values & Beliefs Culture Hopes & Dreams Family Pat Spirituality Friends Choice Sexuality Politics hobbies Deegan: ‘2JustFlower’

12. How I am Seen By Others After Being Diagnosed With Dementia Culture Friends DEMENTIA I am dependant Beliefs & Values Sexuality choices Hopes and Dreams Have to rely On others Spirituality

13. Memory matters • Why measure quality of life: • Central to inform services of what priorities/ needs matter • A guide to confirm if services are being effective • An individual can lead a fulfilling life despite dementia • Quality of life needs to be protected despite dementia • Services can work together to build on strengths and use ‘protectors’, un-tapped resources or stories to un lock potential. • Although a person’s dementia may deteriorate- their quality of life can improve

14. Memory matters Using medication Wisely

15. Memory matters Anti-psychotics however are frequently used off licence to manage behaviour and agitation in people with dementia. In their report ‘always a last resort’-2008, the All Party Parliamentary group found evidence of widespread use of anti-psychotics in care homes for people with dementia; ‘Probably from the best estimates there are somewhere between 100,000 and 150,000 people in the UK in care facilities, with dementia, who are prescribed these treatments.’ (Ballard, 5 February, oral evidence)

16. Memory matters NICE-SCIE guideline (2007), state: ‘those with mild to moderate non-cognitive symptoms should not be prescribed antipsychotic drugs’. Despite these guidelines, in a recent survey a third of community mental health teams said that anti-psychotics were used regularly in their area, even in patients with mild psychotic symptoms (National Audit Office, 2007

17. Memory matters The Royal College of Nursing estimates that only 10 per cent of challenging behaviours occur as a consequence of dementia with 90 per cent occurring in response to care practices or environmental factors . They suggest that a ‘diagnostic overshadowing’ occurs leading to all challenging behaviours to be solely attributed to brain damage, which overshadows anything else a person with dementia may present with

18. Memory matters The WISE Approach The WISE project aims to introduce greater scrutiny into the use of psychotropic medication and inform clients, carers and other professionals on the use of psychotropic medication in people who are referred to the Community Mental Health Team: Older people

19. Memory matters • Key areas: • Clear exploration of behaviour from persons perspective • review of other changes- eg environmental factors, other health & medication changes • Alternative behavioural/psychological interventions tried first • Clear description of what medication being used for and what expected benefit • Start date and stop date • Care home- start on a Monday • Scrutiny review- if not effective, if side effects after 6 weeks

20. Memory matters • Staff training: • Behavioural and psychological interventions: • Dementia Care mapping • Cognitive Stimulation therapy • Diagnosis and diagnostic support • Psycho-social family Intervention

21. Memory matters • Care in Hospitals: • Acute General Hospitals: New Liaison service May 2012: • Improve detection of dementia • Improve care and well being, • staff training • Community Hospitals: • Improve staff training in recognition of dementia, delirium, depression • Screening tool developed to improve recognition and early referral • Improve joined up working

22. Memory matters • Progress: • Skills analysis developed and future skills purchased • Joint training developed to be implemented early 2012 across community services • Care Pathway led service implemented in full Carlisle January 2011 • Development in Eden to implement from June 2011 Positive feedback by Dept of Health Dementia Design Council on visit October 2010 • Audit of progress on Care Pathway delivery to enable local variations to integrated approach • Joint working within local dementia strategy implementation groups to ensure delivery across Cumbria

23. Memory matters • References: • Department of Health (2001) National Service Framework for Older People. London HMSO. • Coleman, R., Baker, P., & Taylor, K., (2003) Working to Recovery- a guide to mental wellness P&P Press • Deegan, P. E. (1996) Recovery and the conspiracy of hope. The Sixth Annual Mental Health Services Conference of Australia and New Zealand. Brisbane, Australia. • Kitwood, T., and Benson, S., (1995) The New Culture of Dementia Care Bradford Dementia group • Brooker, D.(2007) Person centred dementia care. Jessica Kinglsey Publishers. London • Scottish Intercollegiate Guidelines Network (2006) Management of Patients with Dementia-National clinical guidance SIGN 86, www.SIGN.AC.UK • National Institute of Clinical Excellence, (2006) Supporting People with Dementia and their Carers in Health and social Care. NICE Guideline 42. www.NICE.org uk • Tucker, S., Hughes, J., Challis, D., Burns, A. (April 2005) Personal Social Services Research Unit (PSSRU). Services for Older People with Mental Health Problems: The Balance of Care in Cumbria. Discussion Paper. • Marriot, A., Donaldson, C., Tarrier, N., Burns, A., Effectiveness of cognitive behavioural intervention in reducing the burden of care, 2000. The British Journal of Psychiatry 176: 557-562. • National Institute of Clinical Excellence, (2010), Quality standards for Dementia. www.NICE.org.uk • Dept. of Health (2009) Living well with dementia- a National Dementia Strategy. Dept. of Health London