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

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

Sharing the diagnosis of dementia Should we give the diagnosis? If yes, how should we? How should we support people afterwards?

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”

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

European Dementia Consensus Network 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

European Dementia Consensus Network 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.

European Dementia Consensus Network 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

Evaluation and diagnosis of dementia associated with reductions in depression and anxiety (Carpenter et al, JAGS, 2008) PatientsCarers

Sharing the diagnosis of dementia Should we give the diagnosis? If yes, how should we? How should we support people afterwards?

Sharing the diagnosis of dementia Foy et al BMC Health Services Research Lecouturier et al BMC Health Services Research Preparing for diagnosis Integrating family members Exploring the patient’s perspective Disclosing the diagnosis finding out what the patient knows using dementia and Alzheimer’s disease exploring what the diagnosis means Responding to patient’s reactions Focusing on quality of life and wellbeing Preparing for the future Communicating effectively

Sharing the diagnosis of dementia Should we give the diagnosis? If yes, how should we? How should we support people afterwards?

Psychotherapy in Alzheimer’s disease (Burns et al, British Journal of Psychiatry ) Description RCT of 40 patients with Alzheimer ’ s 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 Alzheimer ’ s disease

Brodaty et al, Journal of the American Geriatrics Society

The Three Country study (American Journal of Psychiatry ) 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

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

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

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

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