Sharing the diagnosis of dementia Alistair Burns Manchester Mental Health and Social Care Trust University of Manchester Manchester Academic Health Science Centre Declaration of interest

1
Sharing the diagnosis of dementiaAlistair
BurnsManchester Mental Health and Social Care
TrustUniversity of ManchesterManchester
Academic Health Science CentreDeclaration of
interest
2
Sharing the diagnosis of dementia

• Should we give the diagnosis?
• If yes, how should we?
• How should we support people afterwards?
• Mixture of opinion, experience and evidence

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Sharing the diagnosis of dementia

• Should we give the diagnosis?
• If yes, how should we?
• How should we support people afterwards?

4
Sharing the diagnosis of dementia

• Against sharing the diagnosis
• A person will be viewed differently
• Malignant social psychology (Tom Kitwood)
• Confirms fears and removes hope
• They will forget
• Therapeutic nihilism (nothing can be done)
• Who helps afterwards
• Do no harm

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Sharing the diagnosis of dementia

• In favour of sharing the diagnosis
• The right to know
• They have asked
• First stage in adjustment
• Prevents conspiracy
• Encourages dialogue

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Disclosure of dementia diagnosis

• Method
• Survey of 21 National family associations in
  Europe in 2003
• Survey of 500 caregivers in 23 countries by
  Alzheimer Europe
• Consultation with six leading experts from
  different European countries

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Should the patient be told of the diagnosis of
dementia?

• The following principle should be applied
• The diagnosis of dementia should be disclosed to
  the patient unless specific circumstances
  indicate that this would not contribute to the
  welfare of the patient nor improve the quality of
  care that they receive.

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Should the patient be told the diagnosis of
dementia?

• specific circumstances that limit the extent of
  disclosure of the diagnosis of dementia to the
  patient are
• the presence of severe impairment of cognition
• the patients explicit wish not to know their
  diagnosis
• the well founded opinion of the treating
  physician that the disclosure of the diagnosis
  might lead to a worsening of the patients state

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Evaluation and diagnosis of dementia associated
with reductions in depression and
anxiety (Carpenter et al, JAGS, 2008)
Patients
Carers
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Sharing the diagnosis of dementia

• Should we give the diagnosis?
• If yes, how should we?
• How should we support people afterwards?

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Sharing the diagnosis of dementiaFoy et al BMC
Health Services Research 2007 7 207Lecouturier
et al BMC Health Services Research 2008 8 95

• Preparing for diagnosis
• Integrating family members
• Exploring the patients perspective
• Disclosing the diagnosis finding out what the
  patient knows
• using dementia and Alzheimers disease
  exploring what the diagnosis means
• Responding to patients reactions
• Focusing on quality of life and wellbeing
• Preparing for the future
• Communicating effectively

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Sharing the diagnosis of dementia

• Should we give the diagnosis?
• If yes, how should we?
• How should we support people afterwards?

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Psychotherapy in Alzheimers disease(Burns et
al, British Journal of Psychiatry 2005 187 143-7)

• Description
• RCT of 40 patients with Alzheimers disease
• Six sessions of Interpersonal therapy
• Results
• Psychotherapy had no effect on primary outcomes
• Relatives reacted less to problem behaviours
• Conclusion
• No evidence to support routine use of
  psychotherapy in Alzheimers disease

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Brodaty et al, Journal of the American Geriatrics
Society 2003 51 657-64
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The Three Country study(American Journal of
Psychiatry 2008 16 893-904)

• Description
• 155 carer patient dyads across 3 centres
• RCT of caregiver intervention All patients had
  donepezil
• Results
• Harmonisation of intervention achieved
• Reduction in caregiver depression
• No significant effect on nursing home
  admission/mortality
• Some country differences Americans reacted more
  strongly, less satisfied, English felt more
  supported, Australians more mastery
• Conclusion
• Caregiver interventions can be implemented across
  centres and have a positive effect in addition to
  anti-dementia medication

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Manchester Memory Clinic

• Brief description
• Two nurses, p/t psychologist, secretary, 3
  consultant clinical sessions, plethora of
  trainees
• Modus operandi
• all referrals from GPs
• usually seen at home by a nurse standard
  assessment protocol
• discussed at management meeting
• discharged
• seen in outpatients
• psychological assessment
• seen again at home
• investigations (GPs do bloods and physical)
• Post diagnostic groups
• Research projects

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Manchester Memory Clinic

• What do we do (1)?
• Diagnosis often given at home by our nurse
• In the clinic give the name
• reassure other things not present
• you are the same person who walked in
• follow up
• Time to reflect and answer questions what is
  going to happen, can anything be done, is it
  genetic?
• Rarely a surprise
• Risk assessment

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Manchester Memory Clinic

• What do we do (2)?
• Post diagnostic counselling
• Confirming the diagnosis
• Practical information and advice
• eg driving, power of attorney, living will
• Treatment options
• Getting on with things
• Life history, reservoir of memories
• Memory retraining group
• Lifestyle intervention

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Sharing the diagnosis of dementia

• Conclusions
• 1. Disclosing/sharing the diagnosis of dementia
  is important 2. It is possible to do it badly
• 3. Supporting people with dementia, and their
  families, after the diagnosis is essential