Caring for People with Dementia

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Caring for People with Dementia

• Its really time to do something now!

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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

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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

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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

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Emphasized areas

• Integration
• Prevention
• Quality
• Locality based services
• Personalization
• Choice

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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 dont work

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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

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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.

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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

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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

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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

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Darzi Dementia Pathway

• Good care pathway
• See handout

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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

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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

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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

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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

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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 patients
  wishes

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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

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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

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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

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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

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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

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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

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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

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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

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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.

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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

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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.