Rights and Legal Protection Policy (July 2005)

1. Introduction

This paper sets out Alzheimer Scotland’s policy positions on the rights and legal protection of people with dementia, and on ethical issues that affect their lives. It is based on past consultations with our members and on our published policy reports. It is intended to clarify our policy by drawing together summaries of our position on a range of issues. This paper is a companion to the ‘Health Campaign Policy’ paper, approved by Council at its meeting in September 2003, which covers issues of policies, structure, practice, quality and community in the diagnosis, treatment, health and community care of people with dementia.

2. An initial statement of the problems

2.1 Background Over the past half century there has been national and international recognition of discrimination against adults with mental incapacity. Human rights and the rights of people with mental and physical disabilities have been given greater importance. Yet many of the 63,000 people with dementia in Scotland are still severely disadvantaged in the quantity and quality of care available to them and in the understanding and regard given to their rights and needs. People with dementia and their carers are at risk of social exclusion, both because of the nature of their illness and as a result of negative attitudes in the community and amongst many professionals. Our survey of attitudes towards people with dementia (1) showed that 40% of respondents thought other people regarded people with dementia as targets for ridicule. People with dementia gradually lose the abilities they need for effective decision-making. These include understanding of speech and writing, the ability to communicate, mathematical calculation, perception of risks, memory of recent events and decisions, recognition of places and people, judgement and conscience. In consequence they may:

put themselves in physical danger make irresponsible decisions about finances and related matters commit breaches of the criminal law become unduly suggestible and susceptible to abuse by others have difficulty accessing information and support for decision-making.

It is essential that the dignity and civil and legal rights of people with dementia should be respected and that they should be given all the assistance needed to participate in decisions that affect their lives and in the wider community for as long as possible. Alzheimer Scotland has a crucial public advocacy role to work to eliminate discrimination against people with dementia, to ensure that their direct voices are heard by policy makers and planners and to ensure protection from all forms of abuse. A main strand of our Involvement Policy is to empower people with dementia to speak out on issues of importance to themselves, including through the Scottish Dementia Working Group. 2.2 Problems People with dementia face a wide range of difficulties which disadvantage them. Among these are that:

professionals are unnecessarily withholding the diagnosis of dementia from people with dementia, hindering them in obtaining appropriate emotional, social, financial, practical and legal support there is a lack of recognition of the rights of people with dementia in terms of the Adults with Incapacity (Scotland) Act 2000, especially by parts of the medical profession local authorities vary in their practice relating to the Adults with Incapacity (Scotland) Act 2000, for example when a person with dementia needs to move into a care home professionals responsible for assessing capacity lack sufficient understanding; assessments often fail to take a holistic, person-centred approach and instead focus either on diagnosis and assessment of severity of dementia or on risk assessment, which may be limited to physical risks and can result in reducing the person's quality of life there is a lack of understanding of how to carry out decision-specific assessments, whether in the domain of welfare, health or finance the general public’s inadequate understanding of dementia leads to inappropriate responses and lack of recognition of civil rights people with dementia are disempowered and there is a lack of recognition of their right to be involved in decisions, due to gradual shifts in relationships with professionals and family members there are problems in detecting abuse, as people with dementia are often unable to complain there is a lack of legal protection for vulnerable adults where abuse is suspected and the person does not have a formal diagnosis of dementia or mental illness (2) safeguards on the covert administration of medication to people with dementia are inadequate there is discrimination in access to insurance implementation of disability discrimination legislation does not always take account of people with cognitive impairment.

3. Recent initiatives

The rights and legal protection of people with dementia have been strengthened by recent legislation, including the UK-wide Disability Discrimination Act 1995 and Human Rights Act 1998. Since the establishment of the Scottish Parliament in 1999, we have welcomed the Scottish Executive’s commitment to recognising and legislating for civil and legal rights. Section 27 of the Scotland Act 1998 provides that an Act of the Scottish Parliament may not include provisions that are incompatible with the Human Rights Act. Legislative and policy reforms since the establishment of the Scottish Parliament include:

Adults with Incapacity (Scotland) Act 2000 – including a set of measures for decision-making on behalf of an adult with incapacity and enshrining in law the right of the adult to have their views and wishes, past and present, taken into account, alongside those of their nearest relative and primary carer Regulation of Care (Scotland) Act 2002 – putting in place a national Care Commission, a Scottish Social Services Council and national Care Standards, measures intended to improve the quality of care of people with disabilities, and regard for their civil and human rights, in any care setting Community Care and Health (Scotland) Act 2003 – providing free personal care on the basis of assessed need for people aged 65 and over; the right of service users to be involved in the assessment of their own care needs; the right of carers to be regarded as partners in the provision of care; the right to direct payments; the entitlement of carers to an independent assessment of their own needs Mental Health (Care and Treatment) (Scotland) Act 2003, which will be introduced in October 2005- entitling people with dementia to access to independent advocacy services, enabling compulsory treatment to take place in the community and establishing a tribunal system which we believe should eventually be adapted to deal with applications under the Adults with Incapacity (Scotland) Act 2000. In addition to legislation, the government has appointed several ‘safeguarding agencies’ including the Mental Welfare Commission, the Care Commission and the Disability Rights Commission.

4. Alzheimer Scotland policy positions

4.1 Advocacy People with dementia need advocates (3) because they:

may be vulnerable to physical, emotional and financial abuse need support at times of transition and when their needs are being discussed should receive all appropriate legal entitlements and benefits need help to safeguard their quality of care.

A wide range of people can advocate for people with dementia, especially family and friends, as well as professionals who know them well. Sometimes these ‘natural advocates’ need professional support. However, not everyone who needs the support of an advocate has a ‘natural advocate’; and where there is a conflict of interest, it will not be appropriate. The right of access to an advocacy service is included in the new Mental Health (Care and Treatment) (Scotland) Act 2003, which comes into effect in October 2005. Whilst dementia-specific advocacy services are probably not viable, it is essential that generic advocacy services have a specialist component. Advocacy for people with dementia is resource intensive in terms of time and skill, and without specialist staff their needs may be marginalised or poorly met.

Alzheimer Scotland believes that: A. ‘Natural advocates’ should be provided with support to advocate for people with dementia. B. Independent advocacy services should include a specialist dementia component.

4.2 The right to know Access to accurate, early diagnosis is vital, not only in relation to possible treatment but in empowering the person with dementia to come to terms with their illness and plan for the future. However, diagnosis for some people is delayed, and follow-up support and information can be poor in some areas(4). Many doctors are withholding diagnostic information from patients with dementia, although they inform the carer. Highlighted in our 1998 report (5) , this remains a significant problem. Ignorance of the diagnosis is a barrier to enabling the person to obtain appropriate emotional, social, financial and legal support, and practical support such as memory training, and to enabling informed planning for the future. It is a major ethical issue that people with dementia are being denied information which is crucial to their lives; and which places carers and others around them in the difficult position of holding a secret. Even where the person is given their diagnosis there is a lack of post-diagnostic support with regard to decision-making and planning for the future. Progress at a policy level is reflected in Scottish Executive’s Health Department’s performance indicators for health boards on early diagnosis, assessment and support for people with dementia; and in the recommendations of ‘Adding Life to Years’ (6), which recognise the importance of early diagnosis and support.

Alzheimer Scotland believes that(7)(9)(9): C. People with dementia are entitled to an accurate and timely diagnosis, and they have a right to be told their diagnosis (as well as a right to refuse the information if they so wish). D. People with dementia should have access to specialist information and emotional and practical support after diagnosis in order to empower them to take charge of their lives and put arrangements in place for the future.

4.3 Adults with Incapacity (Scotland) Act 2000 changes Alzheimer Scotland took a leading role in making the ground-breaking Adults with Incapacity Act the first major legislation of the new Scottish Parliament. Once the Act was in place, we undertook a two-year consultancy for the Scottish Executive, looking at the implementation of Parts 2, 3 and 6 of the Act and making recommendations (10). This highlighted a number of issues, including:

variations in practice by local authorities across Scotland in the application of the Adults with Incapacity (Scotland) Act 2000 lack of free legal aid for family members or friends wishing to seek protection for an adult with dementia, which may be a disincentive to act for the adult’s benefit perceived inappropriateness of the sheriff court environment for hearings under the Act; a better solution would be extending the function of tribunals under the Mental Health (Care and Treatment) (Scotland) Act 2003 to include hearings under the Adults with Incapacity Act.

The Scottish Executive are acting upon the first two of these issues. They have agreed in principle to introduce free legal aid for welfare guardianship proceedings under the Act, and to base legal aid decisions on advice and assistance in relation to the Act on the resources of the adult rather than of the applicant(11). They have also provided further guidance to local authorities on when the Act should be invoked(12). We also made a submission to the Health Department on Part 5 (medical treatment and research). Our comments included:

doctors need better training on how to assess capacity, including improving understanding of dementia and how to communicate with people with dementia if other professionals, such as clinical psychologists and mental health nurses, are to assess capacity, they will need specialist training; however, we had concerns over dentists assessing capacity, because they are less likely to know the patient or to have access to relevant medical records incapacity must not be equated with inability to give informed consent; for example with the use of good communication skills, many people with incapacity will be able to consent to regular treatments, particularly familiar ones the importance of careful safeguards to prevent the prescribing of inappropriate drug treatments such as the use of neuroleptic drugs to control challenging behaviour in people with dementia.

The Scottish Executive has now amended Part 5 of the Act(13), extending the role of assessing capacity for consenting to treatments beyond doctors to include dental practitioners, ophthalmic opticians and registered nurses. The duration of certificates will also be extended to three years, when the person is suffering from a progressive degenerative condition with no chance of improvement. The increase in the number of people with responsibility for assessing capacity makes it even more important that these issues are addressed. In addition, there is a need for guidelines for the assessment of decision-specific capacity in the domains of health, social care and financial management.

Alzheimer Scotland believes that: E. The hearing system for applications under the Adults with Incapacity (Scotland) Act 2000 should be changed from the sheriff court to the tribunal system used under the Mental Health (Care and Treatment) (Scotland) Act 2003. F. There should be national guidelines and extensive training of relevant professionals on the assessment of capacity, including decision-specific capacity. G. Neuroleptic and other psychotropic drugs should be placed on the list of regulated drugs under the Adults with Incapacity (Scotland) Act 2000.
4.4 Vulnerable Adults Bill Alzheimer Scotland welcomed the draft Vulnerable Adults Bill proposed by the Scottish Law Commission in 1993 and the Scottish Executive’s consultation on a draft Bill in 2002. We regret that only parts of the proposals were taken forward under the Mental Health (Care and Treatment) (Scotland) Act 2003. This means that where abuse is suspected, emergency access continues to be denied to a vulnerable person, such as an elderly person who is frail and confused, but who does not have a formal diagnosis of dementia. In addition, there is no provision for preventing unsuitable people from working with vulnerable adults in home, residential, or NHS care. The Scottish Executive has announced a consultation (14) on whether vulnerable adults need further protection in community and regulated settings. The consultation will end on 24 September 2005.

In its response to the 2002 consultation, Alzheimer Scotland set out its beliefs: H. There should be legislation to protect vulnerable adults who remain outwith the scope of the measures provided by the Mental Health (Care and Treatment) (Scotland) Act 2003. I. A list of people unsuitable to work with vulnerable adults should be established. J. There should be measures to allow right of entry to settings where abuse of adults is thought to be taking place and the creation of expulsion orders so that abusers can be removed from those settings K. Assessments and decisions about seeking to exclude an abuser should be multidisciplinary. L. Any legislation should be underpinned by a set of principles based on those of the Adults with Incapacity Act and the Mental Health (Care and Treatment) Act, with the possible addition of a principle of necessity for the safety, health or well-being of the adult, or to protect him or her from abuse or neglect, and of respect for the vulnerable adult.
4.5 Access to genetic information We made a submission to the Human Genetics Commission in March 2001, following wide consultation within the organisation. The aim of the Commission was to investigate issues following an application from the insurance industry to have a right of access to genetic information on individual applicants with specific conditions. The consultation extended to examining whether employers should have a right to genetic information about employees. Our primary concerns are to protect the interests of people with dementia to ensure that they do not suffer from discrimination. We called for:

measures to ensure that those volunteering for research are not deterred because of anxieties that they will have to declare test results for insurance purposes a five year moratorium on access to such test results by the insurance industry. This is because the current state of scientific knowledge does not provide reliable predictors of Alzheimer's disease on the basis of DNA testing in the vast majority of cases, and because actuarial research shows that there is no business necessity for insurance companies to require information on the results of genetic testing for Alzheimer’s disease.

In response to widespread concern about these issues the Government introduced the above measures. In March 2005 the moratorium was extended to November 2011 as part of voluntary agreement between the Government and the Association of British Insurers that ensures insurers' use of predictive genetic tests is transparent, fair, and subject to independent oversight.

Alzheimer Scotland believes: M. The confidentiality of individuals in terms of access to their DNA data should be protected; and there should be proper controls over access for commercial purposes. N. If the insurance industry is allowed access to test results, there should be special measures in cases where a DNA test is reliably predictive, to enable equal access to insurance such as that related to mortgages, so that those already disadvantaged by their illness are not subjected to further disadvantage.
4.6 Advance statements and advance directives (living wills) In June 2005, Alzheimer Europe agreed a position paper on advance directives (15). Alzheimer Scotland contributed to its development, both through the involvement of the Convener as chair of the working group, and by contributing responses to the draft, produced by the Rights and Legal Protection Committee and the Scottish Dementia Working Group. Alzheimer Europe’s paper supports the promotion of advance directives for decisions covering a wide range of health related issues; supports the concept of health care proxies and calls for governments to legally recognise them; encourages people to write statements of values; calls for governments to set up systems for the registration, use and review of advance directives and a clear statutory basis with appropriate safeguards; and insists on the importance of always trying to ascertain and consider the current wishes of patients even if they have written an advance directive. The Alzheimer Europe paper also discusses advance statements. An advance directive, sometimes called a living will, deals specifically with a person’s wishes regarding future medical treatment and health care. An advance statement is any statement about future decision-making for use if the person loses capacity to make these decisions or to communicate their wishes. Although advance directives and statements are not legally binding in Scotland, the Adults with Incapacity (Scotland) Act 2000 achieves the aims set out in Alzheimer Europe’s paper. The principles enshrined in the Adults with Incapacity (Scotland) Act 2000 require the past and present wishes of the adult to be taken into account; an advance directive or statement is a record of past wishes. The Act allows an adult to appoint a welfare attorney, a proxy decision-maker who is given powers, after that adult’s incapacity, to make welfare decisions on his or her behalf, including decisions on medical treatment and research. The adult determines in advance which areas of decision-making the proxy’s powers will cover, and can guide the attorney’s decisions using advance statements. The Mental Health (Care and Treatment) (Scotland) Act 2003 makes advance statements specifically about treatment of mental disorder binding, with some safeguards.

Alzheimer Scotland: O. Supports the general aims of Alzheimer Europe in promoting the concept of advance instruction by people with dementia for a time when they may become incapable of making decisions for themselves. P. Supports the concept of wider advance statements and statements of values (for example on religious beliefs or personal likes and dislikes). Q. Believes that these aims are achieved through the Adults with Incapacity (Scotland) Act 2000. R. Recognises that some people do not wish to make advance plans, preferring to leave decisions in the hands of those who are treating them at the time, and believes that the provisions of the Act are helpful also in protecting these people’s wishes. S. Does not believe that specific registration system for advance directives is required in Scotland, but would welcome general guidance on how to ensure that any such documents are available when and where they are needed.

4.7 Access to people with dementia to take part in medical and social research The Adults with Incapacity (Scotland) Act 2000 makes provision for people with dementia to take part in research provided specific safeguards are followed. The intention of the Act is to widen opportunities for participation in research. However, some ethics committees, and some professionals, who are the ‘gatekeepers’ to accessing people with dementia, appear not to understand the intention of the Act and are unduly restrictive. As a result people with dementia are being denied the opportunity to participate. It is vital that both research can take place involving people with dementia. Without medical research there would be no progress in understanding the causes of the illness and developing possible treatments. Social research is vital to improve our understanding of the experience of dementia and of the effectiveness and quality of services.

Alzheimer Scotland believes: T. People with dementia should be allowed equality of access to participation in research. The safeguards in the Adults with Incapacity Act are sufficient to ensure that when they do take part in research this will not be to their detriment. The Scottish Executive should issue guidelines to address the issue of ethics committees and other professionals unduly restricting their participation.

4.8 Restrictions of freedom of movement and the use of restraints Over the years our Public Policy section has received more cases of complaint from carers about the use of restraints in care homes than on any other topic. At a policy level we have been consulted on the national care standards for care homes, and on the Mental Welfare Commission’s guidance (16)on the use of restraints in residential settings. The guidance provides general principles and covers all forms of restrictions to freedom from physical restraint to medication used as restraint, and technological means such as tagging or video surveillance. However, rights issues continue to arise in relation to certain practices, including: the use of surveillance and electronic tagging; locked doors in homes and hospitals; the inappropriate use of neuroleptic drugs to sedate people whose behaviour staff find difficult; and the covert use of medication.

Alzheimer Scotland endorses the Mental Welfare Commission’s guidance. We believe: U. Any medical, social or psychological intervention must only be introduced after very careful and thorough care planning in which the interests of the individual are paramount. Easy institutional responses must not be tolerated. V. Staff at all levels need specialist dementia care training so that they can understand and implement alternative approaches to avoid the use of restraint.

Kate Fearnley Consultant Policy Analyst & Writer 22 July 2005

Appendix 1

Alzheimer Scotland values and principles for the support of people with dementia and their carers People with dementia are entitled to:

a diagnosis and information about the illness the same respect and regard for dignity and privacy as anyone else the same range and quality of general services as other citizens but delivered with sensitivity to their needs specialised services tailored to their individual needs live as independently as they wish to and in familiar surroundings for as long as possible medical care for other health problems services which recognise and provide for the support needs of their carers, whose goodwill must not be exploited to be assisted to be as fully involved as possible in making decisions about their own lives.

The carers of people with dementia are entitled to:

access to adequate information and support (emotional, financial and practical) to empower them to care in the way that they believe to be most appropriate and for as long as they are able and choose to do so recognition by public policy makers and all service providers (whether public, voluntary or private) of the care which they provide full involvement in the preparation of individual care plans an assessment of their own needs if they wish continuing support after bereavement.

People with dementia and their carers are both entitled to:

opportunities to enhance their abilities participation as far as practicable in decisions affecting their daily lives and future care access to independent safeguards against infringement of legal and civil rights, including advocacy services not be disadvantaged by the illness opportunities to participate in the wider community objective assessment of their general, social and medical needs.

Alzheimer Scotland is committed to the improvement of services for all people with dementia and their carers throughout Scotland. We will co-operate with public, private and voluntary agencies to achieve this end.

Footnotes:

Survey of approximately 1000 people at home, carried out for Alzheimer Scotland by Market Research UK, December 2003. These measures have so far only partly been addressed by the Scottish Executive, through the Adults with Incapacity and Mental Health (Care and Treatment) acts. The Executive is now consulting on further protection for vulnerable adults. Alzheimer Scotland, 1996. Advocacy & dementia Alzheimer Scotland, 2003. Health Campaign Policy Fearnley K, McLennan J, Weaks D, 1998. The right to know. Alzheimer Scotland Chief Scientists Office, 2002. Adding Life to Years - Report of the Expert Group on Healthcare of Older People. Scottish Executive, www.scotland.gov.uk/library3/health/alty-00.asp Fearnley K, McLennan J, Weaks D, 1998. The right to know. Alzheimer Scotland Alzheimer Scotland, 2000. Planning signposts for dementia care services Alzheimer Scotland, 2003. Making the Journey Brighter: early diagnosis and support services for people with dementia and their carers Killeen J, Myers F et al, 2004. The Adults with Incapacity (Scotland) Act 2000: Learning from experience, Scottish Executive Social Research, www.scotland.gov.uk/library5/health/awilfe-00.asp Letter from Hugh Henry, Deputy Minister for Justice, to the Convener of the Justice 2 Committee, The Scottish Parliament, 28 October 2004, www.scotland.gov.uk/Resource/Doc/1097/0005082.pdf Letter from Angus Skinner, Chief Inspector, Social Work Services Inspectorate, to Chief Social Work Officers, 30 July 2004, www.scotland.gov.uk/Topics/Justice/Civil/16360/Interventionsawi The amendments are part of the Smoking, Health & Social Care (Scotland) Bill, which was passed by the Scottish Parliament in June 2005 and at the time of writing awaits Royal Assent www.scotland.gov.uk/Consultations/Current Alzheimer Europe, 2005. Advance directives: A Position Paper 6.2005. www.alzheimer-europe.org/?lm3=10783636B108 Mental Welfare Commission for Scotland, 2002. Rights, Risks and Limits to Freedom www.mwcscot.org.uk

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