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Launch of the report Dementia: ethical issues 1 October 2009. Introduction. Professor Albert Weale FBA Chair, Nuffield Council on Bioethics. The Nuffield Council on Bioethics. Established in 1991 Independent body that examines ethical questions raised by advances in biology and medicine

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Professor Albert Weale FBA

Chair, Nuffield Council on Bioethics

The nuffield council on bioethics
The Nuffield Council on Bioethics

  • Established in 1991

  • Independent body that examines ethical questions raised by advances in biology and medicine

  • Contributes to policy making and stimulates debate

Dementia ethical issues the report
Dementia: ethical issuesThe report

The report contains a number of conclusions and recommendations to policy makers in the following areas:

  • ethical approaches to dementia care

  • tackling dilemmas in day-to-day care

  • decision making

  • stigma and including people with dementia in society

  • recognising the needs of family carers

  • research priorities and participation

  • Dementia: ethical issues

  • Introduction and ethical framework

  • Professor Tony Hope

  • Chair of the Working Party on dementia and

  • Professor of Medical Ethics, University of Oxford

The working party
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

  • Deliberative workshop for 50 members of the public held in Birmingham

What is dementia
What is dementia?

  • Dementia is a disorder in which people experience a progressive decline in their mental ability because of damage to the brain

  • 700,000 people in the UK have dementia

  • This could rise to 1.7 million by 2051

  • One in five people will develop dementia by the age of 85

  • Dementia costs the UK more than £17 billion each year

An ethical framework for dementia
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
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
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
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
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
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

Our view
Our view

  • Those who support and care for people with dementia need more support in tackling the ethical problems they meet every day

  • We conclude there is a need for:

  • Education – to help respond to dilemmas

  • Forums – to share and receive support

Dementia: ethical issues

Ethical approaches to care

Dr Rhona Knight FRCGP

General Practitioner and member of the Nuffield Council on Bioethics

What is ethical care
What is ethical care?

Recognises the value of the person with dementia

Aims to promote the well-being and autonomy of the person with dementia

Pays attention to the interests of carers who provide day-to-day support

We conclude:

1.How things are done, will often be more important than the structure of services

2. Professionals and care workers should treat families as ‘partners in care’

What is ethical care?

What is ethical care1


Information, communication, signposting

Ongoing care and support

Acute hospital services

End of life palliative care

What is ethical care?



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
Information, communication and signposting

Need for

Appropriate information

Practical support

Emotional support

Access to services

Dementia care advisor pilot

Ongoing care and support
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

Acute hospital services
Acute Hospital Services

Often different needs

Avoidance of unnecessary distress

Examples of good practice

End of life palliative care
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

We conclude

We welcome the commitment in the English Dementia Strategy to develop and evaluate such models

  • Dementia: ethical issues

  • Dementia and society

  • Professor Ruud ter Meulen

  • Professor of Ethics in Medicine,

  • University of Bristol

Combating stigma
Combating stigma

  • People with dementia may feel devalued and/or excluded from mainstream society

  • Our ethical framework emphasises the importance of equality for people with dementia

  • Information and awareness campaigns are only one part of the story – dementia must become an accepted, visible part of our society

Promoting inclusion
Promoting inclusion

  • People with dementia need to feel comfortable carrying on with their usual activities, for example:

    • going to a club or out to lunch

    • participating in church activities

    • taking part in voluntary work

    • involvement in dancing, art and music

Promoting inclusion1
Promoting inclusion

  • Shops, restaurants and leisure facilities have a legal duty to enable people with dementia to use their services

  • However, they will often not realise this and even if they do, they are unlikely to have sufficient knowledge of dementia to make appropriate adjustments

  • We recommend

  • The Equality and Human Rights Commission should provide practical guidance on how to enable people with dementia to access services

Role of society in providing care
Role of society in providing care

  • Many services required by people with dementia are classed as ‘social’ services

  • Funding arrangements in social care often mean that only ‘crisis’ cases receive appropriate care

Role of society in providing care1
Role of society in providing care

  • Component 2 of the ethical framework:

    “Dementia arises as a result of a brain disorder, and is harmful to the individual”

  • People with dementia should therefore have access to the care they need on the same basis as people with conditions such as cancer

    We conclude

    The availability of services needed by people with dementia should not be determined by classifications of care

  • Dementia: ethical issues

  • Research priorities

  • Professor Hugh Perry FMedSci

  • Professor of Experimental Neuropathy, University of Southampton and member of the Nuffield Council on Bioethics

Combined research funding 2007 08
Combined research funding 2007-08

£ (million)

Source: House of Commons Hansard 16/12/08

Research papers published since 2002
Research papers published since 2002

% of research papers

Source: Knapp M and Prince M (2007) Dementia UK (London: Alzheimer’s Society), pxv.


  • We conclude

  • Major funders should explain more clearly how and why they divide their research funds between areas of research

  • More support and encouragement is needed for researchers who carry out high-quality research in dementia

Funding allocation within dementia research
Funding allocation within dementia research

  • We encourage more research into:

  • The experience of living with dementia

  • How people with dementia can be supported to live the best possible lives

What is the law
What is the law?

  • People have the legal right to make their own decisions about health care and general welfare

  • As dementia progresses, it can get harder for people to make their own decisions

  • Decisions for people who lack capacity must:

    - be in the person’s ‘best interests’ (England and Wales)

    - have the potential to ‘benefit’ the person (Scotland)

Support for making decisions
Support for making decisions

  • Most people do not make important decisions in isolation

  • We recommend

  • Codes of Practice on mental capacity should be amended to emphasise

    • good communication

    • supportive relationships

    • joint decision making

Determining best interests or benefit
Determining ‘best interests’ or ‘benefit’

  • Past and present wishes of a person with dementia may sometimes conflict

  • Neither past nor present wishes can automatically take precedence

  • Important factors include:

    • the relative strength of the person’s wishes

    • the degree of importance of the decision

    • the amount of distress being caused

  • We conclude

Extra guidance is needed on balancing thesefactors

Advance decisions
Advance decisions

  • Advance decisions to refuse treatment are legally binding as long as they have been properly made

  • A welcome opportunity to exercise autonomy?

  • OR

  • Potentially harmful for future care decisions?

  • We conclude

  • It is right for the law to allow people to make an advance decision to refuse treatment if they wish to do so. However, an advance refusal of treatment may not always work in the way the person expected.

Advance care planning
Advance care planning

  • May include:

  • Medical treatment

  • Wishes about where they would like to be as they are dying

  • Particular likes and dislikes

  • Who they would most want to be with them

  • We conclude

  • Decisions about future care are best achieved in the broader context of advance care planning

Welfare attorneys
Welfare attorneys

  • People nominated to take health or welfare decisions on behalf of a person if, in the future, they lose capacity to make those decisions themselves

  • Must act in the best interests of the person with dementia

  • We conclude

  • Welfare attorneys are a ‘social good’ and the process of appointing a welfare attorney should be free of charge for everyone

Challenges to welfare attorneys
Challenges to welfare attorneys

  • A welfare attorney may disagree with doctors over the best interests of the person with dementia, and such disputes can be referred to court

  • We recommend

  • More guidance is needed about when it is appropriate for professionals to challenge the decision of a welfare attorney in court

  • Significant weight should be placed on the fact that the welfare attorney was previously chosen and trusted by the person

  • Dementia: ethical issues

  • Dilemmas in care

  • Professor Julian Hughes

  • Consultant in Old Age Psychiatry and Honorary Professor of the Philosophy of Ageing, Northumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health, Newcastle University


  • Ethical dilemmas arise on a daily basis

  • These are often stressful

  • Those providing care need more support in tackling these dilemmas

  • Guidelines are helpful, but not enough

  • We recommend

  • Those involved in direct care of people with dementia should have access to ongoing education and support in ethical decision making

Assistive technologies
Assistive technologies

  • Concerns include:

    • Intrusion of privacy

    • Stigma (particularly tracking devices)

    • Risk of reduced human contact

  • We conclude

  • The use of assistive technology should be considered on a case by case basis, taking into account:

    • the person’s own views about privacy

    • the likely actual benefit

    • Impact on the carers’ interests

    • dangers of loss of human contact

Balancing freedom and risk
Balancing freedom and risk

  • We recommend

  • ‘Risk

  • assessments’

  • should be

  • replaced

  • by ‘risk-benefit

  • assessments’

Well-being & autonomy

Risk-benefit assessment


  • Restraint may include:

    • Physical holding

    • Straps or belts to keep someone in a chair

    • Locking doors

    • Medicines to calm and control behaviour

    • The Mental Capacity Act limits the use of restraint to circumstances where it is a “proportionate” response to the likelihood of the person suffering harm

    • But there is little guidance on what counts as ‘proportionate’ justification

Using restraint
Using restraint

  • We recommend

  • More guidance for carers on when restraint might count as ‘proportionate’

  • Support for carers that will minimise the need for restraint at home

  • Detailed and practical guidance on the appropriate use of restraint in care homes for all those working in this sector


  • A recent survey of UK carers for people with

  • dementia found that in the previous 3 months:

  • 1% had hit or physically hurt the person

  • 33% reported behaviours categorised as psychological abuse

  • Abuse and neglect may be the result of

  • stress, ill-health or exhaustion of the carer

  • We conclude

  • We emphasise the need both to act to protect the person with dementia and to support their carer where the person with dementia continues to benefit from their care

Joint support in dementia
Joint support in dementia

  • In England: 476,000 unpaid carers of people with dementia

  • In Europe: 50% of carers of people with late stage dementia spend over ten hours each dayproviding care

  • Professional support should have

  • a wide focus, helping carers to

  • support the person with dementia


  • Most carers provide a level of care that

  • compromises their own well-being

  • Carers want to help the person with dementia

  • as much as they are able

  • “To be cared for by others requires

  • trust in the carer. It requires recognition of the

  • carer as caringand of the importance of

  • human community”

  • - consultation respondent


  • We conclude

  • Unless there is evidence to the contrary,

  • there should be a presumption of trust

  • in carers, by health and social care

  • professionals, and by care workers


  • “Sometimes families do not understand when you explain about confidentiality, and they are frustrated not to be involved in consultations”

  • - consultation respondent

  • We support the position that confidential

  • information should be disclosed only in the

  • best interestsof the person with dementia

  • Best interests are often interpreted too

  • narrowly; carers will generally need the

  • same level of information as any other

  • member of the caring team

Considering carers own interests
Considering carers’ own interests

  • Carers’ needs are important quite apart from

  • any benefit to the person with dementia

  • Even though their relationship may be of

  • fundamental importance to both of them

  • It may be difficult for carers to genuinely

  • consider their own interests and needs

  • Professionals should encourage carers to consider their own needs and interests when they are making difficult

  • decisions

Dementia: ethical issues

Research participation

Dr David Wilkinson

Consultant in Old Age Psychiatry

Memory Assessment and Research Centre

Moorgreen Hospital


Why choose to be involved in research
Why choose to be involved in research?

For access to an experimental treatment with potential benefits

As taking part can be rewarding or beneficial for patient and family

For altruistic reasons

Many people with dementia are perfectly capable of deciding for themselves whether or not to take part in research

Those who cannot decide for themselves may take part as long as a number of legal requirements are met

Safeguards in research
Safeguards in research

Current legal safeguards are appropriate to protect those who are genuinely incapable of making their own decisions


The ability of people with dementia to consent is under-estimated

In practice, people who wish to participate are often excluded - even when they have clearly expressed a wish to take part

We conclude

More should be done to help those who wish to participate in research to do so

Facilitating research
Facilitating research

Important factors include:

good clinical trial networks for dementia research with aftercare

adapting information about trials, so that it’s easier to understand so people with dementia can give consent for themselves

For those without capacity:

research into using ‘advance decisions’ to state views and wishes

expansion of role of welfare attorneys in England and Wales