Dementia Services David Storm Clinical Lead: Dementia Pathways

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

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

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

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 Memory matters

Key issues to be addressed from events and evidence 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 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 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

Memory matters Early recognition: Cumbria currently 9 th 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

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 Memory matters

Understanding quality of life in dementia Memory matters

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

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

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 Memory matters

Using medication Wisely

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) Memory matters

NICE-SCIE guideline (2007), state: should not ‘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 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 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 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 Memory matters

Staff training: Behavioural and psychological interventions: Dementia Care mapping Cognitive Stimulation therapy Diagnosis and diagnostic support Psycho-social family Intervention 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 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 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, National Institute of Clinical Excellence, (2006) Supporting People with Dementia and their Carers in Health and social Care. NICE Guideline ukwww.NICE.org 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, The British Journal of Psychiatry 176: National Institute of Clinical Excellence, (2010), Quality standards for Dementia. Dept. of Health (2009) Living well with dementia- a National Dementia Strategy. Dept. of Health London Memory matters