Download Early diagnosis in dementia – the ethical and philosophical

Gloucestershire Primary Care Dementia Summit
24th November 2009
Early diagnosis in dementia – the
ethical and philosophical
background: raising difficulties
for me and you
Julian C Hughes
Consultant in old age psychiatry
Honorary Professor of Philosophy of Ageing
Northumbria Healthcare NHS Foundation Trust
and Institute for Ageing and Health, Newcastle
University
PLAN

The Nuffield Council Report
an ethical framework
 on diagnosis


Philosophical reflections on mild
cognitive impairment

the place of dementia in the world
DEMENTIA: ETHICAL
ISSUES

A Report from the Nuffield
Council on Bioethics
www.nuffieldbioethics.org
THE WORKING PARTY
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Began work in November 2007
Members included those with expertise in
medical ethics, front line care for people
with dementia, law, old age psychiatry and
neuroscience
Public consultation in July 2008 received
over 200 responses
Testimony from experts
Deliberative workshop for 50 members of
the public held in Birmingham
Report launched 1st October 2009
AN ETHICAL FRAMEWORK
AN ETHICAL FRAMEWORK FOR DEMENTIA

Six ‘components’
A methodology for approaching ethical decisions
• Two beliefs about the nature of dementia
• A set of interlinked ethical values
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AN ETHICAL FRAMEWORK:
COMPONENT 1

A ‘case-based’ approach to ethical
decisions
Identify the relevant facts
• Interpret and apply appropriate ethical values
• Compare the situation with other similar situations
•
AN ETHICAL FRAMEWORK:
COMPONENTS 2 & 3

Two beliefs about the nature of dementia
Dementia arises as a result of a brain disorder, and is
harmful to the individual
• With good care and support, people with dementia
can expect to have a good quality of life – you can
‘live well’ with dementia
•
AN ETHICAL FRAMEWORK:
COMPONENT 4
Promoting the interests of the person with
dementia and those who care for them
1. Promoting autonomy
Autonomy is not just about ‘rational choice’ – it includes
supporting important relationships, and supporting the
person in expressing their values
2. Promoting well-being
Well-being includes moment-to-moment experiences of
contentment, and also objective factors such as a person’s
level of mental ability
AN ETHICAL FRAMEWORK:
COMPONENT 5

Acting in accordance with solidarity
The belief that people with dementia are fellow
citizens and that we are all ‘fellow-travellers’
• Recognition of our mutual interdependence
• Duty to support people with dementia and to support
carers in their own exercise of solidarity
•
AN ETHICAL FRAMEWORK:
COMPONENT 6

Recognising the personhood of the person
with dementia
A person with dementia is the ‘same’ person, despite
changes in mood and behaviour
• A person with dementia is of equal value to a person
without dementia
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Ethical Care
WHAT IS ETHICAL CARE?
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Diagnosis
Information, communication, signposting
Ongoing care and support
Acute hospital services
End of life palliative care
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DIAGNOSIS
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A timely diagnosis
- for person and family
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Good quality assessment and support
-
from initial concern
•
Research needed on why some cultural groups
appear hesitant in coming forward
•
Encouragement to share information
INFORMATION, COMMUNICATION AND
SIGNPOSTING

Need for
Appropriate information
• Practical support
• Emotional support
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Access to services
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Dementia care advisor pilot
ONGOING CARE AND SUPPORT
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Flexibility to individual needs
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Importance of developing relationships with
care workers
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Importance of care for the ‘small things’
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Treating the person with dementia with
dignity
END OF LIFE PALLIATIVE CARE
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Palliative, supportive and person centered care
Less likely to receive good quality palliative
Need for appropriate services
Lots of development nationally
The Working Party of the Nuffield
Council welcomed the commitment in the
English Dementia Strategy to develop and
evaluate such models
BACK TO DIAGNOSIS


‘Early diagnosis is so important – so that I am
involved in planning my future’ (Nancy
McAdam, consultation respondent)
‘I was told very early that I have dementia. It
was too early. My life would have been much
easier without knowing my diagnosis’ (Ernie
Allan, consultation respondent)
LIVING WELL WITH DEMENTIA:
A NATIONAL DEMENTIA
STRATEGY (LONDON, DEPARTMENT
OF HEALTH, 2009)

Objectives:
2. Good-quality early diagnosis
 3. Good-quality information for those with
diagnosed dementia and their carers
 4. Enabling easy access to care, support and advice
following diagnosis

BENEFITS OF EARLY DIAGNOSIS
(BAMFORD ET AL (2004) DISCLOSING A DIAGNOSIS OF
DEMENTIA: A SYSTEMATIC REVIEW. INT J GERIATR
PSYCHIATRY 19: 151-69)
relief of understanding what is happening
 opportunity to access appropriate support
services (including welfare benefits)
 advantages of having time to plan
 value of developing a trusting relationship with
professionals

ETHICAL ISSUES
case by caseness
 autonomy interests
 well-being interests
 personhood
 solidarity

TIMELY DIAGNOSIS
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‘…for conveying a diagnosis to be helpful and
appropriate, it must be timely, with benefits
balanced against risks. Where a person stands
to be distressed to the point where no benefit
can be derived, then even an early diagnosis is
perhaps not a timely one.’
(Alzheimer’s Society response to consultation)
REPORT: §3.17

‘…it is crucial not to make assumptions about
the effect the diagnosis will have on the person
with dementia. …the vast majority of people
with mild dementia do wish to be informed
about their diagnosis (even if family members
think they do not), … fears as to the impact of
this information on the person’s general
mental health are generally unfounded.’
REPORT: §3.18

‘We conclude that people should have
access to good quality assessment and
support from the time they, or their
families, become concerned about
symptoms that relate to a possible
diagnosis of dementia’.
REPORT: §3.19

Differences between cultural groups

feelings of shame and stigma?
Cultural bias in cognitive tests
 Need more research on the reasons why there is
variation between cultural groups in readiness
to come forward for diagnosis

REPORT: §§3.20-3.24

The way in which a diagnosis is given (e.g. over
the telephone!):
◦
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effects on personhood and well-being
Diagnosis as a process
Issues of confidentiality and the family
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need to respect the person’s right to confidences
being honoured (autonomy interests)
need to consider capacity very carefully
need to see in context of family
Mild Cognitive Impairment
PHILOSOPHICAL
REFLECTIONS
AMNESTIC MILD COGNITIVE
IMPAIRMENT (O’BRIEN, J. (2008) IN OXFORD
TEXTBOOK OF OLD AGE PSYCHIATRY)
Memory complaint, preferably corroborated by an
informant
 Memory impairment relative to age-matched and
education-matched healthy people
 Essentially preserved general cognitive function
 Largely intact activities of daily living
 Not clinically demented

MCI
Genetic or other biomarkers
 Neuroimaging
 Pre-dementia state suitable for treatment?
 Enables planning and support (i.e. the
advantages of early diagnosis)

MITCHELL, A.J. AND SHIRI-FESHKI, M. (2009). RATE
OF PROGRESSION OF MILD COGNITIVE IMPAIRMENT
TO DEMENTIA – META-ANALYSIS OF 41 ROBUST
INCEPTION COHORT STUDIES. ACTA PSYCHIATRICA
SCANDINAVICA, 119, 252-65
Annual conversion rate – MCI to dementia or
AD: 7%
 Annual conversion rate – MCI to vascular
dementia: 2%
 Progression from MCI to dementia: <50%

NEUROPATHOLOGY AND
NEUROCHEMISTRY
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‘It is … increasingly clear that the spectrum of
diseases that cause dementia, whilst often
considered as separate disease entities clinically,
have a great deal of overlap in their underlying
pathogenesis’ (Holmes 2008).
‘It is difficult to define the pathology of AD
precisely at present. The reason for this is that
the individual pathological components typical of
AD brains all occur to some extent in normal
ageing’ (Nagy and Hubbard 2008).
CORNER AND BOND (2006) IN PPP
Rose diagnosed with: ‘very mild, not really
dementia’.
 ‘When we were told that Rose had this dementia
we were just devastated, that’s the only word for
it. Our world came crashing down around us and
… we cried for days. We couldn’t bring ourselves
to talk to…the kids…or anyone about it. It was
too shameful for Rose’.

WHITEHOUSE (2006) IN PPP

‘At the hundredth anniversary of the first case of
what we have come to call Alzheimer’s disease,
perhaps it is time to reflect on the individual and
social advantages and disadvantages of these
labels on the continuum of cognitive aging.’
THE PHILOSOPHICAL QUESTION
Normal versus abnormal ageing
 The place of values
 Hence, what is our attitude to the ageing brain?
 What is our attitude to ageing?

BIOETHICS VERSUS PHILOSOPHY
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Bioethics gives us some ways to behave in the
clinic
On the whole, give the diagnosis in a timely fashion
 Respect confidences, but assess capacity and
remember the family context
 Use culturally appropriate means to assess people

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Philosophy raises questions about our own lives,
which underpin our attitudes to ageing, ethics
and early diagnosis
What is ageing about and how do we face it?
 In the lives of others?
 In our own lives?

WHITEHOUSE (2006) AGAIN

‘The process of social deconstruction (i.e. ending
AD as a label) cannot eliminate the suffering that
accompanies the loss of cognitive capacity as we
age but it can allow us to think of these processes
in richer and deeper ways than the medical
model allows us.’
CONCLUSIONS

Approach to ethical issues in dementia
Well-being and autonomy
 Cases and context
 Personhood
 Solidarity

The standing of people with dementia in society
 Ageing as a problem for me
 And for you

MANY THANKS
And thanks to the Nuffield Council on Bioethics