Joint Committee on the Draft Mental Incapacity Bill Written Evidence


104.Memorandum from the Alzheimer's Society (MIB 783)

EXECUTIVE SUMMARY

  The Alzheimer's Society welcomes the publication of the draft Bill which has received widespread support from members. People with dementia and their carers have campaigned for new legislation for over a decade. This Memorandum documents their experiences and powerfully highlights the urgent need for reform. The Alzheimer's Society is a member of the Making Decisions Alliance and has contributed to its submission to the Committee.

  People with dementia represent the largest single group of adults affected by incapacity. The Society welcomes the draft Bill's proposals to put into law the principle that all adults are assumed to have capacity to make decisions for themselves. This is vital for people with a diagnosis of dementia who are currently often wrongly assumed to be incapable of making decisions.

  The new Bill promises to give people with dementia more control over issues such as the treatment they receive, how they spend their money and where and how they live. It will also allow them to plan for the future and choose who they would like to make day-to-day decisions on their behalf when they are no longer able to do so. Advance directives will give people assurance that their wishes about end of life treatment will be respected. The Society proposes that the Bill:

    —  is named the Mental Capacity Bill to reflect the presumption of capacity enshrined in the Bill

    —  includes detail on how capacity will be assessed, and by whom

    —  includes a legal right to access independent advocacy at particular points in the assessment process

    —  includes explicit restrictions on the use of general authority to act

    —  recognises advance statements

    —  requires deputies to comply with a valid advance directive

    —  sets out an appeal mechanism by which people can challenge an assessment

    —  allows people to nominate a research proxy or attorney

    —  refers to "personal best interests" rather than "best interests."

  The Society believes that many people with dementia and their carers will not benefit from new legislation unless early diagnosis improves. The effective implementation of the draft Bill depends on significant investment in public and professional education/awareness raising.

1.  THE ALZHEIMER'S SOCIETY

  1.1  The Alzheimer's Society is the leading care and research charity for people with dementia and their carers. It was founded in 1979 as the Alzheimer's Disease Society. It is a national membership organisation, with over 25,000 members and operates through a partnership between over 250 branches and support groups and the national organisation in England, Wales and Northern Ireland.

  1.2  The Society has expertise in information and education for people with dementia, their carers and professionals. It provides helplines and support, runs quality day and home care, funds medical and scientific research and gives financial help to families in need. It campaigns for improved health and social services and greater public understanding of all aspects of dementia.

  1.3  People with dementia represent the largest single group of adults affected by incapacity. There are over 700,000 people with dementia in the UK. Dementia affects one person in 20 aged over 65 and one person in five as they reach over 80 years of age in the UK. As the population ages so the number of people with dementia will grow. There are also over 18,000 people with dementia aged under 65 years of age in the UK.

  1.4  People with dementia lose capacity over time. Alzheimer's disease is the most common form of dementia and the rate at which a person deteriorates will vary from individual to individual. With earlier diagnosis and new treatments, people are retaining capacity for longer. They are also living longer with dementia and increasing numbers of people are now living with dementia for 20 years. Carers continue to undertake most of the caring for people with dementia and this draft Bill has important implications for both people with dementia, their carers as well as a range of professionals.

  1.5  The Alzheimer's Society has been campaigning for new legislation on mental capacity for over a decade and welcomes the introduction of the draft Bill. The Society has been a core member of the Making Decisions Alliance and has contributed to its submission to the Committee.

  1.6  The Society decided to co-ordinate responses from its members rather than ask them to write individually to the Committee. There is huge support for this legislation.

2.  WAS THE CONSULTATION PROCESS PRECEDING THE PUBLICATION OF THE DRAFT BILL ADEQUATE AND EFFECTIVE?

  2.1  Yes. The Alzheimer's Society has had the opportunity to input into policy in this area over a number of years and believes that this has resulted in a draft Bill which will help to improve the lives of millions. The Society is very concerned that there is no further delay to the implementation of this urgently needed legislation.

  2.2  The Society has undertaken extensive consultation with its members, through its website, publications and through regional meetings. It is the words and experiences of people with dementia and their carers that have helped to inform this memorandum.

3.  ARE THE OBJECTIVES OF THE DRAFT BILL CLEAR AND APPROPRIATE?

  3.1  Yes. The draft Bill sets out new powers which would support and protect people with dementia. In particular, these objectives would:

    —  confirm the importance of presuming each individual has capacity until proven otherwise

    —  support a person with dementia to make as many of their own decisions as possible

    —  give carers more rights in day to day decision making on behalf of someone with dementia who does not have capacity

    —  allow a person with dementia to choose who they would like to make decisions for them when they are no longer able to do so

    —  enable people with dementia, while they have capacity, to make an advance directive which they know will be legally binding

    —  protect more people with dementia without capacity from abuse and neglect.

4.  DOES THE DRAFT BILL MEET THESE OBJECTIVES ADEQUATELY AND ARE THE PROPOSALS WORKABLE?

  4.1  The presumption of capacity

  4.1.1  The draft Bill highlights the importance of presuming that an individual has capacity. It is one of the underpinning principles that threads its way throughout the document. As such, it deserves to be given a higher priority and should be set out in Clause 1 of the Bill. Moreover, the title of the draft Bill, the Mental Incapacity Bill, undermines this principle. The Alzheimer's Society believes that the Bill should be known as the Mental Capacity Bill. This would help to emphasise the importance of assuming capacity, rather than incapacity.

  4.2  Maximising decision-making

  4.2.1  The Alzheimer's Society supports a decision-specific functional test of capacity which focuses on what a person can do rather than on what they cannot.

  4.2.2  The draft Bill introduces a new definition of capacity which can only help to empower a person with a diagnosis of dementia. The Alzheimer's Society supports this functional definition of capacity which allows for variation over time and place, as well as according to the type of decision to be made. As one carer explained "there are degrees of capacity—incapacity does not happen overnight. "A person with a diagnosis of dementia is often assumed to have little or nothing to contribute—to have lost their faculties and their judgement. The use of terms such as "living death" and "the loss of self" reinforce negative images of people with dementia and do little to help foster the notion that they will have different levels of capacity to make their own decisions and plan for the future.

  4.2.3  The need for a functional test of capacity is underpinned by comments made by members. Many reported that "people generally assume that dementia patients can't make decisions for themselves" while others wrote of their own mistaken assumptions:

    "I made the mistake of assuming my husband couldn't make decisions for himself. A sharp telling off from him that he `wasn't completely gaga yet' made me think again. Being involved in decision making rather than just doing as I suggest has made a great deal of difference to his capability. His mind seems to be growing by doing rather than degenerating."

  4.2.4  Much good practice does exist and the introduction of new mental capacity legislation would bring an important practical and cultural shift. While some professionals reported that every effort was made to involve a person with dementia, others confirmed the need for greater attention to be paid to this area:

    "My experience is that the professionals make the decisions. Very little effort is made to include a person with dementia and often only a token gesture. There needs to be criteria in place to ensure specific efforts are made and recorded."

    "Assumptions are usually made that people with dementia cannot make decisions and are routinely excluded from the decision-making process."

  4.2.5  While the functional definition of capacity is clearly explained, very little is said on how capacity will be assessed, when, and by whom. Although the Code of Practice will include the detail on assessment, being told that you do not have capacity to make your own decisions removes such a fundamental right that greater safeguards must be in place and included on the face of the Bill. Further detail on how capacity will be assessed, and by whom, needs to be included.

  4.2.6  As one carer explained "unfortunately, there is not one single capacity assessment that will fit all purposes and all people." There is much good practice around assessment and the draft Bill codifies this. Several members reported excellent experiences of skilled, sensitive, multi-disciplinary assessment:

    "The best and most helpful indication we have had of how incapacity is assessed is from our clinical psychologist in her five one hours sessions with my wife. Our GP, occupational therapist, admiral nurse and Alzheimer's Society staff have all directly or indirectly contributed to assessment of my wife's mental incapacity mostly by simple questions in discussion. It will be most important for the method and content of the Code of Practice of the `final assessment' to be fully explained to the patient and carer."

  4.2.7  However, others spoke of a battle to get a proper assessment. Previously, many health professionals dismissed dementia as "old age" and people were all too frequently told that nothing could be done. This experience was highlighted by one carer who said: "It was three years before our GP accepted that it was more than `just getting old' and then we were referred to the psychogeriatric consultant. Obviously by that time it was too late."

  4.2.8  The Audit Commission's recent research reinforces such a view. Over 1,000 GPs replied to their survey. Only about half of them believed that it was important to look for early signs of dementia or to diagnose early and less than half felt that they had received sufficient training for dementia. Many said that they saw no point in looking for an incurable condition.[41] Early diagnosis and assessment allows people with dementia and their carers access to social and health care interventions.

  4.2.9  Unless early diagnosis of dementia improves, people will be denied opportunity to make plans for their future. Several members commented on how rapid the decline was: "my husband had a series of mini strokes and was soon unable to speak or sign his name." Others were relieved to have managed to get the EPA signed just in time.

  4.2.10  Clause 2(3) states that a person should not be "treated as unable to make decisions unless all practicable steps to help him do so have been taken without success." It is important not to underestimate the current situation in which many people with dementia still do not even get told their own diagnosis, let alone involved in decisions about their care.

  4.2.11  The Society believes that an independent advocate can play an essential role in the assessment of someone's capacity and help to ensure that all steps have been taken before an individual is assessed as not having capacity. In particular, advocacy should be made available at particular "crunch points" to ensure that a person is supported to make as many of their own decisions as possible. These include major life changing decisions such as where someone lives or the appointment of a deputy. It is essential that people with dementia are not excluded from decision-making through a lack of expertise or resources. One member reported that she had been "assured that if staffing levels were improved then more effort would be made to include people with dementia in decisions."

  4.2.12  Some members highlighted their concern over the use of cognitive function scores being used as a test for capacity. The reliance on the use of one particular test, the mini mental state examination, to assess capacity stems from its new use as an assessment tool in the prescription of the drugs for the treatment of dementia:

    "Assessment is made regarding the prescription of drugs but this is repetitive and not a complete assessment of how I am."

    "My wife was assessed originally by mini mental state examination. She failed badly but was still able to socialise and interrelate with people."

  4.2.13  In addition, the Alzheimer's Society believes that there should be a mechanism for an individual to challenge a decision about their capacity in the draft Bill and they should be made fully aware of this right.

  4.3  Allowing a person to choose who they would like to make decisions for them when they are no longer able to do so.

  4.3.1  The Alzheimer's Society strongly supports the proposal to extend the current Enduring Power of Attorney (EPA) for financial affairs to a Lasting Power of Attorney (LPA) to include financial, health and personal welfare. Members endorsed these proposals wholeheartedly:

    "I shall use the LPA as soon as it becomes available. Presumably it will supersede the EPA that I have already given to a couple of younger cousins."

  4.3.2  Many people who are given a diagnosis of dementia at an early stage are relieved to have had an opportunity to put their affairs in order and plan for the future. One carer wrote that "my husband signed an EPA, witnessed by the doctor, while he still understood what he was doing—and he seemed relieved to have done so. I registered it later when the need arose and this worked well for us." The introduction of LPAs strengthens the rights of people with dementia to make plans for their future and gives them greater choice. It also introduces a degree of protection as well as reassurance that their wishes will be followed as far as is possible.

  4.3.3  The need for health/welfare attorneys is apparent. Carers are often hindered in their caring role because they are not consulted or involved in important decisions about someone with dementia who has lost capacity. For example, one carer wrote "as my mother's main carer, I needed to know about her medication and any changes in dosage. But they wouldn't tell me because my mother couldn't consent to it."

  4.3.4  The draft Bill includes proposals for new safeguards to protect the person making an LPA from abuse. The Alzheimer's Society supports the safeguards that both the donor and donee have to sign the document and are both notified on application and registration. The Society believes that this is an improvement on the current system operating with EPAs. Although the proposals also retain a welcome element of choice the flexibility also allows for the potential of abuse. For example, it is up to the donee to decide who needs to be informed about the creation of the LPA. The Society recommends that the LPA is signed by a third person other than the donor and the donee.

  4.3.5  A person can only make an LPA while they still have capacity. The draft Bill also proposes that a person obtains a certificate to prove that they have capacity to make an LPA. On consultation, the need for a certificate of capacity prompted very varied responses from members. There was little consensus over how to balance the need for protection and a reduction in bureaucracy. Many carers felt that the need for a "certificate of capacity" went against a presumption of capacity which is enshrined in the draft Bill. Others felt that it was another barrier and would discourage people from making an LPA. However, most erred on the side of caution and the Society agrees that additional safeguards are necessary. As one carer stated "bureaucracy is awful, but the kind of abuse involved in these situations is sometimes worse." Another wrote "that I am afraid we now live in a world where people need more protection—even at times, within their own family."

  4.3.6  Several members were concerned that a capacity certificate would deter many people in making an LPA, particularly those who were not middle class. For example, one member wrote: "All very well for middle class people who are acquainted socially with doctors and solicitors but a big obstacle for low income groups." Others remained concerned about the ability of doctors and solicitors to really know the person well enough to confirm a statement of capacity. The Society would welcome further consideration of the use of a "springing clause" where the individual making the LPA chooses who should decide that they no longer have capacity—in most cases this is most likely to be someone who knows the individual well.

  4.3.7  The Alzheimer's Society recommends that a similar mechanism to obtaining a passport is used, thereby keeping it as accessible and affordable as possible. This would mean that a broader range of people in the community could sign the document to say that to say that they believed the person had capacity to make an LPA. The Society is anxious that people are not required to pay for an additional fee for a "certificate of capacity", for example from their GP.

  4.3.8  The Society supports the proposal that a person may choose to hand over responsibility early for financial affairs while they still have capacity. Indeed, this is a provision, that many people currently choose to take up under the EPA system. However, a person acting as an attorney will not be able to make welfare or health decisions while an individual still has capacity. This is correct for any healthcare decisions, but the Society believes that some people will wish to hand over some personal welfare decisions early. Indeed, on consultation many members supported this move:

    "I see no reason why the LPA should not be registered early provided that any decision can be overridden by the patient while they still have the mental capacity to do so."

    "It should be possible to register the document while an individual still has capacity if that is the wish of the individual, as with the existing EPA, to stipulate that it should not be registered, or that the donee should not act until incapacity is proven. A similar condition could also be written in about personal welfare."

  4.3.9  Moreover, the proposals in the draft Bill on LPAs differ on this issue from those on the Continuing Power of Attorney (CPA) proposed in Making Decisions. It was proposed initially that it would be possible for the attorney to exercise powers in relation to financial and welfare issues—but not healthcare—while the donor is still capable, if that was the donor's wish. The Society would welcome further clarity on the change in this position and whether it really is workable and in the best interests of the person with dementia. It is important to note that, in practice, decisions about care often relate to both financial matters and personal welfare. It is difficult to separate financial decisions and welfare ones when it comes to moving a person to a care home for example.

  4.3.10  At the moment, with the current system of EPAs many carers act as an attorney without actually registering it. Simply by signing the form they believe that they have a right to make decisions. This is currently not the case and is not envisaged for the proposed LPA. This, the Society believes is right. The donor should be able to choose when to register the LPA if they are aware that their powers are failing. However, many people will not have the insight to do this, leaving it to friends and family members nominated to decide when the right time to register the LPA is. This can be a very difficult decision:

    "99.9 per cent of the time my wife has no idea what is going on but very rarely she knows exactly what she wants and is utterly logical. Can we ignore that 0.01 per cent?"

  4.3.11  Careful guidance will be required to ensure that those acting as attorneys are supported to enable the donee to make as many of their own decisions as they would wish. While the majority of people with dementia progressively lose capacity, many will have fluctuating levels of capacity during the early stages. It is important that the mechanisms are put in place which are affordable and flexible enough to cater for this group.



  4.3.12  Although reduced rates are available, a person with dementia currently has to pay £220 to register their EPA. On consultation, very few thought that this was a reasonable cost, most thought it was excessive ("especially once solicitors' fees were added", "£220 is over two-weeks pension", "this is a further tax on the elderly and disabled"). Many members felt that this fee would dissuade people from registering an LPA and increase a person's vulnerability to abuse.

  4.3.13  One final point on LPAs relates to the language used. The terminology of donees and donor is confusing and runs contrary to the Wolfe reforms. The Society recommends that the use of donor and attorney is more accessible.

  4.4  Rights to make day-to-day decision by carers

  4.4.1  Dementia is a progressive, degenerative condition and one in which a person steadily loses capacity to make their own decisions. The Alzheimer's Society welcomes the move to give carers legal powers to act on behalf of a person with dementia who does not have capacity. This would plug a significant gap in current legislation. Moreover, the failure to involve carers, who currently undertake most of the care of people with dementia, often leads to poor quality dementia care. For example, one carer reported that "staff acted as if they had sole responsibility for my mother and knew exactly what she wanted without consulting us when they didn't even know her name properly." Another stated simply that "I have never felt that I was fully involved in decisions."

  4.4.2  Most carers of people with dementia are partners and often frail themselves. Two-thirds of people with dementia continue to live in their own homes. This includes a significant minority who live on their own, but most people with dementia are cared for by family members. Many recognise the huge responsibility of acting on someone else's behalf—and often feel unsupported in their role. In addition, carers often feel very disempowered when trying to advocate for a person with dementia. The new general authority to act will help carers feel that they (a) have a right to be involved in decision making and (b) have a duty to be consulted. Currently, many carers do not feel able or entitled to speak out. It is hoped that the general authority to act will empower carers with new rights and give them increased confidence to act in the best interests of the person without capacity.

  4.4.3  The draft Bill proposes that both carers and professionals will have an equal general authority to act in the best interests of the person with dementia. The introduction of the general authority raises new issues in relation to the different levels of duty placed on professionals and carers—all of whom will have a general authority to act. As one carer highlighted:

    "Legislation must bear in mind that the vast majority of carers are likely to be non-professionals, with foibles, problems and a life of their own to live. In my experience the job is 24 hours a day, seven days a week, 52 weeks a year with no financial reward; just the satisfaction of doing their duty by their loved ones and making their lives throughout this dreadful and prolonged period, as comfortable as they can; doing for them as they would wish to be done by themselves."

  4.4.4  The Alzheimer's Society would welcome further clarification on how the general authority to act will work in practice. What support will be available to help carers and professionals use this authority appropriately? Professionals have experience of, and are accustomed to, working to a code of practice. But little is known about how a separate code of practice will apply to carers. Further debate on this is necessary.

  4.4.5  The draft Bill, for example, makes no distinction between a decision made by a carer or a professional—both of whom believe they are acting in a person's best interests. And as one Alzheimer's Society branch explained, decision-making works well "provided the family and friends agree with professionals about what's best." The Alzheimer's Helpline receives hundreds of calls from carers every year who feel that they are unable to argue against professionals. Several carers felt strongly that "professionals alone should not have the right to make decisions without the involvement of a wholly independent adviser".

  4.4.6  The Alzheimer's Society believes that independent advocacy would help to ensure that the best interests of the individual are at the forefront of decision-making as well as reduce the need to resort to court for the resolution of conflict between carers and health and social care professionals, particularly for common disputes such as moving someone to a care home.

  4.4.7  Where shared decision-making can't be reached, disputes can be referred to the court for resolution. A person wanting to act on behalf of a person with dementia without capacity can also apply to the court for a single order. This area also represents another example of where advocacy could play and important role and reduce the need for protracted and expensive court intervention.

  4.4.8  In addition, the Society believes that the general authority confers too broad a power and restrictions should be placed its use. Following consultation, members felt strongly that the following acts should not be permitted by someone with only a general authority to act:

    —  medical treatment

    —  moving someone, for example into a care home

    —  selling property

    —  managing financial affairs over a prescribed limit.

  4.4.9  To avoid abuse the Bill should outline carefully what powers are conferred by a general authority to act. For example, people with dementia in care homes represent one particularly vulnerable group—especially those who have no visitors. While three-quarters of residents in care homes have dementia, most care staff have little training or understanding of dementia. The Society is concerned about the use, and monitoring, of the general authority to act.

  4.4.10  This would mean that if decisions have to be taken that fall outside of everyday decisions, such as the giving of medication or the payment of bills, neither the carer or the professional alone could make a decision. This would help to improve the quality of life for many people with dementia and help to identify their best interests.

  4.4.11  It is anticipated that joint discussion and decision-making would identify the best interests of the person with dementia and lead to prompt medical attention where appropriate. One of the problems of the current situation is that professionals are often reluctant to act when an individual cannot give consent, for example:

    "My mother had dementia and very bad cataracts. Vision would have improved her quality of life enormously but the doctors refused to operate because we couldn't agree on her behalf and she certainly couldn't."

  4.4.12  There will be a great need for public education around the general authority to act. One member accurately identified one of the significant problems surrounding general authority when she asked "will there be an exhaustive list of the `everyday decisions'"?

  4.4.13  The Society recommends that the principle of best interests is amended to "personal best interests." This will ensure that the person without capacity is protected. For example, a person with dementia in a care home who is up all night may be given neuroleptic drugs to sedate them. This action might be in the best interests of other residents and of the staff, but is unlikely to be in the best interests of the person with dementia. However, as one carer highlighted, the provision of care, and an assessment of best interests is often dictated by costs:

    "My aunt `wishes' to have more than one bath per week but there are insufficient staff to grant those wishes although the home owners said she should have more and she pays a fortune to be there. My mother could not swallow biscuits and `wished' for a piece of cake—but the home owner said cake was too expensive."

  4.5  Advance directives

  4.5.1  The Society welcomes the inclusion of advance directives in the draft Bill. An advance directive enables a person with dementia to project their informed consent into a situation when they are no longer able to give it, thereby protecting their right to personal autonomy and choice and giving directions to carers and professionals about making decisions about treatment in advance of incapacity.

  4.5.2  An advance directive gives people assurance that their wishes will be respected. It is also a tool which requires you to speak to others about your wishes. Several members reflected that for many this may not be feasible:

    "I haven't made an advance directive. I don't want to think about the later stages of dementia—I am living for the present."

    "I find it almost impossible to get my wife to think about the future—some professional counsel may be required. A suitable checklist would make this easier."

  4.5.3  But as several carers highlighted, an advance directive can play an important role in making one's views known:

    "I intend to make an advance directive, having recently been involved with a situation where the family's preferences were directly opposed to those of the consultant with no real means of knowing what the lady would really have wanted."

    "I approve of this concept of an advance directive. At one stage I had to decide whether or not my wife should be force fed. Following a family consultation with the profs involved, two of my three children agreed with my decision not to do so, but for a long time there was friction between me and the daughter who did not agree."

  4.5.4  Although advance directives are binding under common law they are not widely known about or easily accessed. One carer, as part of a research study on the ethics of dementia care, when asked about advance directives said:

    "I think it would take an enormous responsibility for decision making off my children in my case. In fact we asked our solicitor in 1993 if he would help my husband to draw up an advance directive and he refused."

  The Society has long supported the use of advance directives and issued its own advance directive in September 2003 (appendix one). The Bill would make advance directives binding under statute law and provide people with dementia with precision about how they would work.

  4.5.5  The inclusion of advance directives in the draft Bill will help reduce the misunderstanding and confusion which surrounds them. On consultation with members, several expressed concern about the use of advance directives. High levels of confusion exist with many believing that it is the same thing as euthanasia or assisted suicide. The Alzheimer's Society believes that it is important to establish that an advance directive is entirely distinct from the promotion of euthanasia. Refusal of medical treatment at the end of life is distinct from a positive action to end life.

  4.5.6  People with dementia in the late stages often experience great difficulty with swallowing. When this occurs in the final stages of the illness, most people accept that this is a part of the dying process and the most appropriate response is palliative care. The goal of dementia care at this stage is therefore one of comfort and emotional wellbeing—not of prolonging life. The Society believes that a feeding tube is rarely a source of comfort at this stage of a terminal illness and that it is inappropriate for a person with advanced dementia to be given artificial hydration and nutrition for the sole purpose of prolonging life. In the advanced stages of dementia, quality of life rather than length of life should be prioritised.

  4.5.7  The Society has serious concerns about the frequency with which people in the terminal stages of dementia are artificially fed and hydrated by a tube. The Society advocates that when a person is no longer able to eat, or is taking little or no fluids by mouth, the best way to alleviate the pain and distress of a person in the final stages of dementia is through one-to-one nursing. Family members, carers and nursing staff who sit by the bedside of a person with advanced dementia can provide appropriate quality care. A carer can offer sips of water or moisten a person's mouth and thereby provide a more appropriate and less invasive alternative to artificial hydration. The use of a tube for artificial hydration and feeding should not be considered best practice in the provision of care of people in the advanced stages of dementia.

  4.5.8  An advance directive cannot authorise a doctor to do anything unlawful, such as practise euthanasia or act against their clinical judgment. The Society recommends that an advance directive should not authorise a refusal of "basic care" such as the maintenance of bodily cleanliness, alleviation of severe pain and the provision of direct oral nutrition and hydration.

  4.5.9  The Society believes that advance directives should be regularly reviewed while the person still has capacity, and written following full consultation between a patient and doctor. It is important that they are as contemporary as possible.

  4.6  Protection of people with dementia without capacity

  4.6.1  The Society supports the creation of both the revised Court of Protection and the Public Guardian. These will help to protect some of the most vulnerable members of society. It is essential that both are sufficiently resourced to ensure effective monitoring as well as public and professional education/awareness raising.

  4.6.2  The draft Bill requires additional safeguards to ensure that people with dementia are adequately protected. These include further guidance on assessment, robust mechanisms for people to challenge an assessment of incapacity and restrictions on the use of general authority to act. In addition, the Society recommends that a person who has been convicted of abuse should not be named as a deputy or a lasting power of attorney. Further debate is required on whether some professionals, such as a manager of a care home, should be appointed as deputies or LPAs because of the potential conflict of interest.

  4.6.3  While it is right that the emphasis is placed on maximising decision-making, the Society would like to highlight the fact that people with most forms of dementia will deteriorate and eventually be unable to make any decisions for themselves. It is therefore essential that the proposals in the draft Bill recognise that most people with dementia will require ongoing protection and mechanisms for substitute decision-making. It will not be appropriate for carers to have to apply repeatedly for powers to act. As one carer explained:

    "my husband who had multi-infarct dementia would have been quite incapable of decision-making for many years before his death."

  4.6.4  The need for skilled assessment is vital to ensure that people are enabled to make as many of their own decisions as possible. However, skilled assessment is also essential to ensure that people with dementia are identified and that loss of capacity is recognised. Many carers reported that the problem was one of capacity being assumed when the person had dementia. Hospitals were frequently named as a setting in which staff seemed unaware of the needs of people with dementia.

  4.6.5  Often, people with dementia do not have insight into their condition, or are unable to accept that something is wrong. One daughter wrote of her experiences:

    "As a former nurse, my mother was extremely good at covering up her problems and was extremely plausible. Her doctor reacted with shocked amazement at our suggestion that my mother had dementia—`There's nothing wrong with your mother. I saw her only the other day and had a conversation with her. She's fine.' This was at a time when my mother was putting the electric kettle on the gas ring, entertaining phantom meetings of teachers in her front room, turning up at the hairdressers at 2am and living on a diet of biscuits having forgotten how to cook."

  4.6.6  It is this group of people who are particularly at risk of neglect if proper assessment fails to occur. Health and social care professionals have often told distraught carers that there is nothing they can do if the individual refuses help. As one carer explained—"just because my mother knew the queen was called Elizabeth she was declared competent to make decisions and left in excremental squalor." The draft Bill must enable carers and professionals to act in the best interests of the individual.

  4.6.7  Access to independent advocacy can also play a vital role in protecting the interests of people with dementia who do not have capacity. For example, one carer detailed a common scenario in which advocacy could help: "the greatest need is for the protection of those patients who have no close family to act as carer, or for those whose carer is also elderly and unable to act in a fully competent manner for a variety of reasons. My view in such cases is that an independent advocate should be appointed to ensure that the patient's interests are observed."

  4.6.8  The draft Bill proposes that a person will not be able to force a person without capacity to comply with a proposed action unless it is essential to prevent a substantial risk of significant harm to the person concerned. The Alzheimer's Society believes that this is too wide a power and that the potential for abuse too high. For example, it might be interpreted by some that it is necessary to lock people in or restrain a person with dementia in order to prevent harm. The use of force should not be used unless immediate harm is imminent.

5.  MIGHT LESSONS BE LEARNED FROM SIMILAR LEGISLATION ALREADY IMPLEMENTED IN SCOTLAND OR ELSEWHERE?

  5.1  The Society has learnt a great deal from Alzheimer's Scotland—Action on Dementia and its experiences of helping to implement and monitor the Adults with Incapacity Act (2000). In particular, the Society encourages further discussion with colleagues in Scotland on:

    —  assessment of capacity

    —  resolution of conflict and the system for single shared assessment and review

    —  the best way to ensure that effective monitoring and safeguards are in place.

  5.2  The widespread use of health proxies and advance directives across the United States means that there are sophisticated tools and support available to support people who wish to plan in advance for a time when they may no longer have capacity. The use of advance directives is common and useful checklists and guidance are widely available.

6.  ARE THERE RELEVANT ISSUES NOT COVERED BY THE DRAFT BILL WHICH IT SHOULD HAVE ADDRESSED?

  6.1  The Society has identified a number of important omissions in the draft Bill in paragraph 4. These include the lack of detail on how capacity will be assessed and by whom, as well as the need to include access to independent advocacy.

  6.2  The draft Bill would be improved if its proposals were broadened to include advance statements, and not just advance directives. Advance statements help those appointed make decisions on what they know the person would have wanted and not just what they would have refused. For example, the use of advance statements would help avoid the situation in which a person is nominated to act as a health proxy/given lasting power of attorney for healthcare without actually having discussed with the donee what their wishes might have been.

  6.3  The Society believes that advance statements are a valuable way in which people can document what they would like to happen if they lose capacity. The right to make an advance statement should be enshrined in law and understood to be valid documentation of an individual's wishes and preferences. The Society proposes that an advance statement is subject to the tests of reasonableness and practicality.

  6.4  Interestingly, many carers who were partners/spouses felt that advance statements were not necessary because they knew what each other wanted:

    "I was fortunate that after 52 years of a super marriage my late husband and I needed no tape recordings or diaries. We knew instinctively what the other half would wish."

  6.5  Not all of us are so fortunate, and many people with dementia will not have family or friends to care for them. Others recommended that "the best advice is to tell as many people in the family (and outside) of particular preferences in the hope that someone will remember them. If there is a written record you can re-read it." Another suggested that "everyone should be encouraged to leave a personally written record. My friends and relatives do probably know my wishes—but that is not good enough." One residential care provider shared their use of Department of Health consent forms to try and establish with family representatives what the person's previous views were, including the use of medication, group living, alternative therapies and the desire to be independent.

  6.6  In addition, the Alzheimer's Society believes that the effective implementation of the draft Bill depends on significant investment in public and professional education/awareness raising.

  6.7  Even under the current system of EPAs, which has been running for several years, huge confusion exists about the extent of the power conferred upon the attorney. Many mistakenly already believe that they have been given powers to make decisions on personal welfare and health matters. Indeed, following our consultation on the draft Bill one carer wrote:

    "I am horrified. I thought as I had a power of attorney over my husband's affairs I had to be consulted regarding the giving of medication."

  6.8  It is not only members of the public that will need better information, but professionals as well. Carers acting under an EPA continue to report "a huge wall of ignorance, apathy and incompetence about the EPA. We might just as well have announced that we came from Mars." But it is not only financial institutions and staff who will need to understand what a lasting power of attorney is, but a very broad range of professional groups. The awareness raising and training is therefore substantial and underpins the success of implementation of any new legislation.

  6.9  The participation of adults without capacity in research raises many ethical issues. People in the early stages of dementia are still able to talk about their participation in current and future research. This means that they can be given the opportunity to both discuss the implications of participation in a research project and express their views with their carers and the professionals who care for them. People with dementia are capable of expressing their feelings and preferences well into the progression of the disease.

  6.10  The Society supports the view that people who are unable to give legal consent to clinical trials should be given special protection. An attorney would only be able to consent to participation in research if they have been given specific powers to act as a "research proxy" through the creation of an LPA. Interestingly, research shows that proxies often have different views on participation in research than the people for whom they speak. This highlights the need for discussion and documentation of an individual's views. Advance statements would also allow people with early stage dementia to express their broad wishes regarding research participation. Assent should always be obtained from the person with dementia. The Society also believes that the research proxy should be able to withdraw the person from the research at any point even if this contradicts the advance statement or any expressed preferences.

  6.11  Non-therapeutic research, by definition, tends not to be in the individual's best interests. Many people with dementia feel strongly that they wish to participate in research that may provide some good to other people and understand that they will derive no personal therapeutic benefit. Indeed, many people with dementia express such a sentiment to their carer and are willing to experience potential distress and discomfort in the hope that it will promote understanding. This is a complex area which is fraught with ethical problems. In particular, genetic research demands particular attention. The collection of a blood sample that could be used to analyse genetic data could be seen as non-therapeutic research. Research into the genetics of various forms of dementia may depend on people with a diagnosis donating their blood for research that is unlikely to have any direct benefit for them.

  6.12  The attendant demands of protecting the best interests of the person with dementia and advancing knowledge through research may result in a conflict of interest between the person with dementia, their carer, and the researcher. While it is important that people with dementia have the same opportunities to participate in research as the rest of the population, they are a vulnerable group whose rights must be protected. Further work on the use of advance statements and research proxies would be welcome, given the different investments and interests involved.

7.  SUMMARY

  7.1  The words of people with dementia and their carers highlight the importance of this draft Bill:

    "Introduce this Bill as soon as possible. Too many carers are struggling to cope with insufficient back up and no legal insights to care for their loved ones properly."

    "New legislation should be introduced as soon as possible so that people with dementia can benefit now and know that their views are important and taken into consideration. People without dementia have their say in their own treatment and so should we."

August 2003





41   Audit Commission, 2000, Forget me not: mental health services for older people, London: 21. Back


 
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