Early diagnosis in dementia – Early diagnosis in dementia – the ethical and philosophical the ethical and philosophical background: raising difficulties background: raising difficulties for me and youfor me and youJulian C HughesJulian C HughesConsultant in old age psychiatryConsultant in old age psychiatryHonorary Professor of Philosophy of AgeingHonorary Professor of Philosophy of AgeingNorthumbria Healthcare NHS Foundation Trust Northumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health, and Institute for Ageing and Health, Newcastle UniversityNewcastle University

Gloucestershire Primary Care Dementia Summit24th November 2009

PLA

N 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 • 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

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

1. Promoting autonomyAutonomy is not just about ‘rational choice’ – it includes supporting important relationships, and supporting the person in expressing their values

2. Promoting well-beingWell-being includes moment-to-moment experiences of contentment, and also objective factors such as a person’s level of mental ability

Promoting the interests of the person with dementia and those who care for them

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

Ethical Care

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WHAT IS ETHICAL CARE?

• Diagnosis• Information, communication, signposting• Ongoing care and support• Acute hospital services• End of life palliative care

DIAGNOSIS• A timely diagnosis

- for person and family

• 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

• Access to services• Dementia care advisor pilot

ONGOING CARE AND SUPPORT• Flexibility to individual needs

• Importance of developing relationships with care workers

• Importance of care for the ‘small things’

• Treating the person with dementia with dignity

END OF LIFE PALLIATIVE CARE

• 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 ‘…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!):◦ effects on personhood and well-being

Diagnosis as a process Issues of confidentiality and the family

◦ 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

PHILOSOPHICAL REFLECTIONS

Mild Cognitive Impairment

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

‘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

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

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 THANKSAnd thanks to the Nuffield Council on Bioethics