Challenging the perceptions of dementia care: how can we do things

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					Challenging the perceptions of
dementia care: how can we do
      things differently?



        Dr Roger Bullock
    Kingshill Research Centre
The National Dementia Strategy

      4 in 10 diagnosed
      2009 Big launch
      Slow start
      2011: 4 in 10 diagnosed
                   Why?
•   Primary care needs education
•   Services need more investment
•   Need more public education
•   Spend lots on TV advertising

• Actually a lot has happened, this is just a
  poor performance indicator
           Smoke and mirrors
•   What is dementia?
•   What is Alzheimer’s disease?
•   Is this normal ageing?
•   Have we got the right strategy?
•   Is 4 out of 10 actually quite good?
          Eras of dementia
• Senility – lost in the ageing process
• Dementia – through the biomedical looking
  glass, where the person becomes invisible
• Personhood – where brain meets body
• Disability – empowering to ask for same
  as the able bodied
• Citizenship – having an equal position in
  society
                Biomedical
•   Incurable brain disease
•   Decline and dependency
•   Loss of person
•   Aggression and difficult behaviour
•   Plaques and tangles
•   Burden on healthcare
     Biomedical explanations
• The cholinergic hypothesis
• BPSD
• Visual hallucinations and acetylcholine
• Increased tangles in the frontal lobe and
  psychosis – but no dopamine loss
• Not much other physical evidence for
  “BPSD”
• The amyloid hypothesis
          Mild cognitive impairment

•   Or prodromal AD
•   How useful is it?
•   Do people want it – how early is early?
•   Where are we going with this?
        Response has been
• Research for a cure, particularly AD
• Exaggeration of benefits of any treatments
• Over complication of diagnostic tests
• Health payers created new rules for this
  particular long term condition
• NICE perpetuated them (and research
  perpetuates NICE)
• Primary care think it is all very difficult
               Is it difficult?
A concept of brain failure…

• Brain development – good diet, education
• Brain maintenance – use it, don’t abuse it,
  cardiovascular health
• Brain impairment – vascular disease, dietary
  failures (homocysteine), obesity, lack of
  exercise, diabetes
• Brain failure – pathology (which becomes a risk
  factor), vascular disease, inflammation
           This is primary care
•   Childhood and adolescent development
•   Cardiovascular protection
•   Weight advice
•   Diabetes control
•   Holistic care
•   Management of morbidity of ageing
•   Managing dementia – with or without the label
             And public health
•   Illiteracy and poor diet
•   Smoking, drugs and alcohol
•   Obesity
•   Diabetes
•   Lack of exercise
•   Supplements (e.g. folic acid)
            Simple solutions (1)

• Health education at school level – even
  intergenerational education?
• Support Jamie Oliver
• Maintenance of good physical health
• Exercise
• Cognitive stimulation as you age – and as
  therapy
    Current specialist services
• Wait for the event
• Dominated by “diagnosis” and care
  programmes – seen as needed
• Concentrate on difficulties
• Offer crisis response
• Monitor decline
• Support the carers in many ways, but not
  always the individuals – reassurringly
  expensive
• Promote dependence, not recovery
                  Issues
• 95% of referrals are AD – memory clinics
  are self selecting
• Most AD patients and families know
• Other diagnoses are not always complex

• Could this be delivered in the current
  primary care context? Is it already?
           Simple solutions (2)

• Engage primary care
• Use the drugs going off patent as an
  opportunity to get this right
• Have a memory clinic in every surgery i.e.
  make it a normal experience
                   Dementia

• Latin for “loss of mind”
• Definition driven by memory
• Actually is a clinical stage, where a functional
  end point is reached
• Has multiple causes
• Functional decline relates more to executive
  disorders
• Cannot be reversible – cognitive impairment can
Cortical Sites of Origin for the Dorsolateral, Orbitofrontal,
and Anterior Cingulate Frontal Subcortical Circuits
                   Location of the Lesion


Dysexecutive Type Disinhibited Type              Apathetic Type
Dorsal convexity system   Orbitofrontal system   Mesial frontal system
Diminished judgment,      Stimulus bound         Diminished spontaneity
 planning, insight         behavior              Diminished verbal
Perseveration             Diminished social       output
Cognitive programming      insight               Diminished motor
 deficit                  Distractibility         behavior
Diminished self-care      Emotional lability     Diminished
                                                  psychomotor speed
             Personhood
• The individual counts
• They need comfort, attachment, inclusion,
  identity and occupation – ‘wellbeing’
• Helpful and holistic
• Improved the care context
• Positioned an individual within society
           But is it enough?
• It continues to be passive and
  unidirectional – putting a person in the
  position of dependence on others
• Tends to promote the status quo rather
  than growth
• Has reached an impasse….
      Personhood’s dilemmas
• Can collude with the biomedical model.
  Status is still conferred by other as we still
  are not clear what people with dementia
  want. It is person centred, not person
  directed
• Individual focus does not always have
  cultural relevance and talks of “the
  dementia experience” – assuming a
  homogeneity that does not exist
             Even more…
• It uses apolitical language which is
  intuitively appealing
• Has not impacted society’s image of frail,
  cognitively impaired and dependent
  people who get nasty and cost money
• So needs to move towards making people
  with dementia active and vocal members
  of society
              Citizenship
• The relationship people have with the
  state
• Based on power, personhood is not
• Has exclusionary tendencies and assumes
  cognisance and ability to work/contribute
  (Lister 2003)
• Denies difference (Higgs 1997)
              Citizenship
• The relationship people have with the
  state
• Based on power, personhood is not
• Has exclusionary tendencies and assumes
  cognisance and ability to work/contribute
  (Lister 2003)
• Denies difference (Higgs 1997)
   Need to make citizenship a
            practice
• Achieved in individuals through the power
  dynamics of everyday talk and action
  (Barnes 2004)
• Expression of human agency (Lister 2003)
• Fundamental to the way of being with
  others (Isin 2007)
• Creates norms, values and practices to
  solve problems for the individual and
  others
    National dementia strategy
• Intervention by the state
• Promotes better public knowledge (citizenship)
• Hinges around early diagnosis (biomedical) and
  the need for a label
• Intends to enable “Living well with dementia”
  (personhood)
• Needs to aim to promote dementia in society, not
  improved care for people with dementia
      So need to shift current
           paradigms
Agree what early diagnosis means and what
 it triggers. People with dementia then
 require a move from:

  – Comfort to growth
  – Identity to identities
  – Occupation to purpose
  – Attachment to solidarity with others
  – Love to freedom from discrimination
                    How?
• Encourage people with dementia to speak out in
  a positive way
• Enable people with dementia to act in public
  positions
• Look at research on what people want, not just
  focus on cures
• Commission services that promote citizenship
• Challenge some aspects of the law e.g. HRA
                   Care
• A species activity that includes everything
  we do to maintain, continue and repair our
  world so that we can live in it as well as
  possible
• It includes our bodies, our selves and our
  environment, all of which we seek to
  interweave in a complex life-sustaining
  web
• Citizenship depends on care
                  Care
• Facilitation of care promotes citizenship,
  so not only people with dementia and their
  carers need a voice, professionals do too
• Dementia strategy arose because people
  with dementia felt services were not
  working - a mismatch of high expectation
  that something should be done and a low
  expectation anything will be
           All services need to…

• Build on the ethics of care:
      Attentiveness (interdependence means
             others matter, more so the vulnerable)
      Responsibility (all contexts are recognised)
      Competence (services are delivered)
      Responsiveness (alert to balance shifts)
      Trust

• Promote citizenship above dependency
      A new citizenship dementia
          strategy (charter)
• Education about the brain from an early age
• Understanding that life choices contribute to
  future brain failure – as with other organs
• Including preservation of cognition in the well
  being strategies
• Creating dementia friendly environments,
  including employment opportunities
• Looking at societal solutions e.g.
  intergenerational schools
           Simple solutions (3)

• Consider dementia as a long term
  condition
• Challenge the expectations, including legal
  and societal to build a citizenship model
• Plan to make a long term difference
How to assess in the new model
•   Context
•   Abilities (reverse of difficulties)
•   Intrapersonal understanding
•   History of the person (Life story)
•   Interpersonal relationships
•   Societal responses
        Dementia services?
• Need a partnership of people with
  complimentary skills who have the time to
  gain full contextual understanding
• Have to understand the full physical, social
  and psychological aspects of an individual
  pertaining to their place in society
• If aiming at early detection, must use their
  findings to promote the person within
  society
    New outcomes need to be set
•   Individual levels
•   Better commissioning expectations
•   Societal acceptance
•   Moral philosophers employed in the NHS?
•   Ultimately we need increase in autonomy,
    based on a personal, family and societal
    reaction augmented by benefit from any
    potential future drug intervention
          Simple solutions (4)

• Keep the biomedical model in context – do
  not wait for more specialist drugs
• Involve public health to bridge the
  health/social divide
• Set all encompassing local targets
• Make living well with dementia a reality
          Eras of dementia
• Senility – lost in the ageing process
• Dementia – through the biomedical looking
  glass, where the person becomes invisible
• Personhood – where brain meets body
• Disability – empowering to ask for same
  as the able bodied
• Citizenship – having an equal position in
  society
Thank you for your attention

				
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posted:8/9/2012
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