Dr Lisa Blissitt 129/06/2009 Caring for People with Dementia It’s really time to do something now!

Dr Lisa BlissittDr Lisa Blissitt 1129/06/200929/06/2009

Caring for People with Caring for People with DementiaDementia

It’s really time to do It’s really time to do something now!something now!

29/06/200929/06/2009 Dr Lisa BlissittDr Lisa Blissitt 22

West Midlands SHA Dementia West Midlands SHA Dementia Clinical Pathway GroupClinical Pathway Group

• Our NHS Our Future – National Darzi Our NHS Our Future – National Darzi reviewreview

• Strategic framework for the West Strategic framework for the West MidlandsMidlands

• 9 clinical pathway groups9 clinical pathway groups

• New look service but no new moneyNew look service but no new money

• Only the West Midlands have separate Only the West Midlands have separate DementiaDementia


Darzi Dementia PathwayDarzi Dementia Pathway

• Direct cost to the NHS of dementia is Direct cost to the NHS of dementia is 3.3B3.3B

• 38% increase in dementia over the 38% increase in dementia over the next 13 years, 154% over 43 yearsnext 13 years, 154% over 43 years

• No overarching of dementia servicesNo overarching of dementia services

• Reactive style – crisis – inappropriate Reactive style – crisis – inappropriate use of servicesuse of services

• Carers no is going to decreaseCarers no is going to decrease


Underpinning PrinciplesUnderpinning Principles

• Always patient and carerAlways patient and carer

• Service development based on Service development based on demand and capacity data : now and demand and capacity data : now and projectedprojected

• Every PCT prevalence figures Every PCT prevalence figures including YODincluding YOD

• The whole pathway mattersThe whole pathway matters


Emphasized areasEmphasized areas

• IntegrationIntegration

• PreventionPrevention

• QualityQuality

• Locality based servicesLocality based services

• PersonalizationPersonalization

• ChoiceChoice


ChallengesChallenges

• All living longer, more dementiaAll living longer, more dementia• Less moneyLess money• Inequalities wideningInequalities widening• Variable qualityVariable quality• Complex systemsComplex systems• Little public confidenceLittle public confidence• Little investment in preventionLittle investment in prevention• Increasing costs and buying things that Increasing costs and buying things that

don’t workdon’t work


National Strategy National Strategy ImplementationImplementation

7 early priority outcomes7 early priority outcomes

1.1. Early intervention and diagnosis for allEarly intervention and diagnosis for all

2.2. Improved community personal servicesImproved community personal services

3.3. Supporting carersSupporting carers

4.4. Improved quality in general hospitalsImproved quality in general hospitals

5.5. Living well in care homesLiving well in care homes

6.6. Informed and effective workforceInformed and effective workforce

7.7. Joint commissioning strategy for dementiaJoint commissioning strategy for dementia


West Midlands VisionWest Midlands Vision

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


8 Standards to achieve 8 Standards to achieve visionvision1.1. Health and social care to jointly plan and Health and social care to jointly plan and

commission a service for people with commission a service for people with dementia and their carers which provides dementia and their carers which provides seamless, integrated and proactive careseamless, integrated and proactive care

2. The specified services for Dementia interface with services available for all other long termconditions and those for Older people

3. Interventions are available closer to home with home as the base starting point


8 Standards8 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


8 Standards8 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


Darzi Dementia PathwayDarzi Dementia Pathway

• Good care pathwayGood care pathway

See handoutSee handout


PreventionPrevention

• Tackling ageism and stigmaTackling ageism and stigma• Awareness raising – start in schoolsAwareness raising – start in schools• Dementias and disease progression Dementias and disease progression

until deathuntil death• Likelihood of dementia and other Likelihood of dementia and other

long term conditions – the issueslong term conditions – the issues• Info to be available at different Info to be available at different

sources using a variety of methodssources using a variety of methods


Early InterventionEarly Intervention

• Diagnosis – primary care liaison Diagnosis – primary care liaison workersworkers

• Memory Assessment ServiceMemory Assessment Service

• Looking to the future – end of life Looking to the future – end of life care, benefits, wills etc while capablecare, benefits, wills etc while capable

• Ongoing Person and CarerOngoing Person and Carer

• Dementia Pathway Co-ordinatorDementia Pathway Co-ordinator


Dementia Pathway Co-Dementia Pathway Co-ordinatorordinator

• Agent to the person with dementiaAgent to the person with dementia

• Accessed after receiving a diagnosisAccessed after receiving a diagnosis

• Co-ordinate complex care situationsCo-ordinate complex care situations

• Involved until death & beyondInvolved until death & beyond

• Pathway navigatorPathway navigator

• Knowledge of individualized budgetsKnowledge of individualized budgets


13 Outcomes Measures13 Outcomes Measures

• Early detection in primary care as a QOF Early detection in primary care as a QOF targettarget

• Time to specialist assessment = 18 weeksTime to specialist assessment = 18 weeks• Dementia databaseDementia database• Unplanned (crisis) admissionsUnplanned (crisis) admissions• Access to appropriate neuroimagingAccess to appropriate neuroimaging• Rates of prescribing of dementia drugsRates of prescribing of dementia drugs• Assistive technology and telecareAssistive technology and telecare• Unsupervised prescription of sedative Unsupervised prescription of sedative

psychotropic drugspsychotropic drugs


13 Outcomes Measures13 Outcomes Measures

• Access to non-pharmacological therapiesAccess to non-pharmacological therapies

• Provision of mental health support in Provision of mental health support in general hospitalsgeneral hospitals

• Availability of out of hours specialist careAvailability of out of hours specialist care

• Expert carer support programmesExpert carer support programmes

• Place of death and relationship to Place of death and relationship to patient’s wishespatient’s wishes


Recommendations Recommendations

• Mapping and benchmarkingMapping and benchmarking of of dementia services by Oct 2009dementia services by Oct 2009

• PCT and LA commissioners to PCT and LA commissioners to monitor monitor and reviewand review their services every 2 years their services every 2 years

• Every PCT must commission a Memory Every PCT must commission a Memory Assessment Service with an Assessment Service with an integrated integrated health and social care team by 2010health and social care team by 2010


RecommendationsRecommendations

• By 2010, all people with dementia admitted By 2010, all people with dementia admitted to a to a general hospitalgeneral hospital will receive care from will receive care from staff who have received appropriate and staff who have received appropriate and ongoing training in dementia careongoing training in dementia care

• Separate Separate dementiadementia from from functionalfunctional inpatient inpatient mental health provision by April 2010mental health provision by April 2010

• Setup dementia coordinator role by April Setup dementia coordinator role by April 20102010



• Identify funded pathway to swiftly access Identify funded pathway to swiftly access MRI volumetry (hippocampal MRI volumetry (hippocampal segmentation), I-FP-CIT (DaT-SCAN), & PIB segmentation), I-FP-CIT (DaT-SCAN), & PIB PET scans where appropriate) by April PET scans where appropriate) by April 20102010

• Shared care protocols for dementia drugs Shared care protocols for dementia drugs by April 2009by April 2009

• Appoint/contract named consultant and Appoint/contract named consultant and commissioner for YODcommissioner for YOD

• Clarify pathway for ASRBD with emphasis Clarify pathway for ASRBD with emphasis on recovery/neuro rehabilitationon recovery/neuro rehabilitation



• Commissioning specialist input into Commissioning specialist input into Care Homes by April 2009Care Homes by April 2009

• Improving home care by 2010 through Improving home care by 2010 through – Mandatory accredited dementia training Mandatory accredited dementia training

for formal carersfor formal carers– Adhering to agreed minimum care Adhering to agreed minimum care

standardsstandards– Audit of carer satisfactionAudit of carer satisfaction– Availability of appropriate respite careAvailability of appropriate respite care



• User and carer involvement in User and carer involvement in service planning and inspection service planning and inspection (health and social care ) by April (health and social care ) by April 20092009

• Providing culturally sensitive Providing culturally sensitive proactive support for minority group proactive support for minority group carers by 2010carers by 2010


Priority AreasPriority Areas

• Raising public awareness – 80% of Raising public awareness – 80% of public asked in the West Midlands public asked in the West Midlands said they knew little or nothing aboutsaid they knew little or nothing about– What dementia is, types, services What dementia is, types, services

available, information sourcesavailable, information sources– Prevention and self care actionsPrevention and self care actions



• Increasing numbers who receive a Increasing numbers who receive a formal diagnosisformal diagnosis– 33% at present receive a formal 33% at present receive a formal

diagnosis and often at advanced stages diagnosis and often at advanced stages when admitted to an acute sectorwhen admitted to an acute sector

– Addressing whole diagnostic pathway Addressing whole diagnostic pathway from presentation of symptoms to from presentation of symptoms to diagnostic test and capacity to reaching diagnostic test and capacity to reaching and presenting a diagnosisand presenting a diagnosis


Unmet NeedUnmet Need

• The diagnosis gapThe diagnosis gap

Only a third of people are diagnosed Only a third of people are diagnosed and for most of them it happens too late. and for most of them it happens too late. For me, diagnosis unlocks the whole For me, diagnosis unlocks the whole system.system.

Sube Banerjee, joint lead national dementia Sube Banerjee, joint lead national dementia strategystrategy



• Planning and provision of Planning and provision of coordinated care input following coordinated care input following diagnosis – reducing use of diagnosis – reducing use of inappropriate unscheduled careinappropriate unscheduled care

• Including advanced care planning Including advanced care planning and someone to hold the and someone to hold the coordination of this across all service coordination of this across all service sectors.sectors.


Obstacles to Obstacles to ImplementationImplementation

• Systems and policies – hopefully with Systems and policies – hopefully with the national dementia strategy this the national dementia strategy this will be co-ordinated and developedwill be co-ordinated and developed

• ResourcesResources

• CultureCulture

• TrainingTraining

• Lack of advocacyLack of advocacy


Darzi Dementia Pathway Darzi Dementia Pathway

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

Dr Lisa Blissitt 129/06/2009 Caring for People with Dementia It’s really time to do something now!

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