Caring for People with Dementia

1. Caring for People with Dementia It’s really time to do something now! Dr Lisa Blissitt

2. West Midlands SHA Dementia Clinical Pathway Group • Our NHS Our Future – National Darzi review • Strategic framework for the West Midlands • 9 clinical pathway groups • New look service but no new money • Only the West Midlands have separate Dementia Dr Lisa Blissitt

3. Darzi Dementia Pathway • Direct cost to the NHS of dementia is 3.3B • 38% increase in dementia over the next 13 years, 154% over 43 years • No overarching of dementia services • Reactive style – crisis – inappropriate use of services • Carers no is going to decrease Dr Lisa Blissitt

4. Underpinning Principles • Always patient and carer • Service development based on demand and capacity data : now and projected • Every PCT prevalence figures including YOD • The whole pathway matters Dr Lisa Blissitt

5. Emphasized areas • Integration • Prevention • Quality • Locality based services • Personalization • Choice Dr Lisa Blissitt

6. Challenges • All living longer, more dementia • Less money • Inequalities widening • Variable quality • Complex systems • Little public confidence • Little investment in prevention • Increasing costs and buying things that don’t work Dr Lisa Blissitt

7. National Strategy Implementation 7 early priority outcomes • Early intervention and diagnosis for all • Improved community personal services • Supporting carers • Improved quality in general hospitals • Living well in care homes • Informed and effective workforce • Joint commissioning strategy for dementia Dr Lisa Blissitt

8. West Midlands Vision By 2012 all people with a suspected or confirmed diagnosis of dementia will access an integrated, seamless, proactive and high quality locality based service that encompasses all the expertise to meet the needs of the people with dementia and those of their carers. The emphasis will be on personalization and choice. Dr Lisa Blissitt

9. 8 Standards to achieve vision 1. Health and social care to jointly plan and commission a service for people with dementia and their carers which provides seamless, integrated and proactive care 2. The specified services for Dementia interface with services available for all other long term conditions and those for Older people 3. Interventions are available closer to home with home as the base starting point Dr Lisa Blissitt

10. 8 Standards 4. The employed workforce will be competent to address physical and behavioural symptoms 5. Sources of intimate carers will be resourced 6. Each Dementia service will have a Dementia Pathway Coordinator which can be accessed and will remain available throughout the disease process Dr Lisa Blissitt

11. 8 Standards 7. Existing disease registers in GP practices will be used to trigger preventative and therapeutic actions for defined types of Dementia 8. Minimum core standards of competency for Dementia care will be used to underpin all education programmes for staff working alongside people with Dementia Dr Lisa Blissitt

12. Darzi Dementia Pathway • Good care pathway See handout Dr Lisa Blissitt

13. Prevention • Tackling ageism and stigma • Awareness raising – start in schools • Dementias and disease progression until death • Likelihood of dementia and other long term conditions – the issues • Info to be available at different sources using a variety of methods Dr Lisa Blissitt

14. Early Intervention • Diagnosis – primary care liaison workers • Memory Assessment Service • Looking to the future – end of life care, benefits, wills etc while capable • Ongoing Person and Carer • Dementia Pathway Co-ordinator Dr Lisa Blissitt

15. Dementia Pathway Co-ordinator • Agent to the person with dementia • Accessed after receiving a diagnosis • Co-ordinate complex care situations • Involved until death & beyond • Pathway navigator • Knowledge of individualized budgets Dr Lisa Blissitt

16. 13 Outcomes Measures • Early detection in primary care as a QOF target • Time to specialist assessment = 18 weeks • Dementia database • Unplanned (crisis) admissions • Access to appropriate neuroimaging • Rates of prescribing of dementia drugs • Assistive technology and telecare • Unsupervised prescription of sedative psychotropic drugs Dr Lisa Blissitt

17. 13 Outcomes Measures • Access to non-pharmacological therapies • Provision of mental health support in general hospitals • Availability of out of hours specialist care • Expert carer support programmes • Place of death and relationship to patient’s wishes Dr Lisa Blissitt

18. Recommendations • Mapping and benchmarking of dementia services by Oct 2009 • PCT and LA commissioners to monitor and review their services every 2 years • Every PCT must commission a Memory Assessment Service with an integrated health and social care team by 2010 Dr Lisa Blissitt

19. Recommendations • By 2010, all people with dementia admitted to a general hospital will receive care from staff who have received appropriate and ongoing training in dementia care • Separate dementia from functional inpatient mental health provision by April 2010 • Setup dementia coordinator role by April 2010 Dr Lisa Blissitt

20. Recommendations • Identify funded pathway to swiftly access MRI volumetry (hippocampal segmentation), I-FP-CIT (DaT-SCAN), & PIB PET scans where appropriate) by April 2010 • Shared care protocols for dementia drugs by April 2009 • Appoint/contract named consultant and commissioner for YOD • Clarify pathway for ASRBD with emphasis on recovery/neuro rehabilitation Dr Lisa Blissitt

21. Recommendations • Commissioning specialist input into Care Homes by April 2009 • Improving home care by 2010 through • Mandatory accredited dementia training for formal carers • Adhering to agreed minimum care standards • Audit of carer satisfaction • Availability of appropriate respite care Dr Lisa Blissitt

22. Recommendations • User and carer involvement in service planning and inspection (health and social care ) by April 2009 • Providing culturally sensitive proactive support for minority group carers by 2010 Dr Lisa Blissitt

23. Priority Areas • Raising public awareness – 80% of public asked in the West Midlands said they knew little or nothing about • What dementia is, types, services available, information sources • Prevention and self care actions Dr Lisa Blissitt

24. Priority Areas • Increasing numbers who receive a formal diagnosis • 33% at present receive a formal diagnosis and often at advanced stages when admitted to an acute sector • Addressing whole diagnostic pathway from presentation of symptoms to diagnostic test and capacity to reaching and presenting a diagnosis Dr Lisa Blissitt

25. Unmet Need • The diagnosis gap Only a third of people are diagnosed and for most of them it happens too late. For me, diagnosis unlocks the whole system. Sube Banerjee, joint lead national dementia strategy Dr Lisa Blissitt

26. Priority Areas • Planning and provision of coordinated care input following diagnosis – reducing use of inappropriate unscheduled care • Including advanced care planning and someone to hold the coordination of this across all service sectors. Dr Lisa Blissitt

27. Obstacles to Implementation • Systems and policies – hopefully with the national dementia strategy this will be co-ordinated and developed • Resources • Culture • Training • Lack of advocacy Dr Lisa Blissitt

28. Darzi Dementia Pathway By 2012 all people with a suspected or confirmed diagnosis of dementia will access an integrated, seamless, proactive and high quality locality based service that encompasses all the expertise to meet the needs of the people with dementia and those of their carers. The emphasis will be on personalization and choice. Dr Lisa Blissitt