THE CHARACTERISTICS OF PEOPLE WITH DEMENTIA WHO ARE USERS AND NON-USERS OF THE LEGAL SYSTEM: A FEASIBILITY STUDY
CHAPTER ONE: PEOPLE WITH DEMENTIA, SOCIAL POLICY AND THE LEGAL SYSTEM IN SCOTLAND
This chapter provides an outline of the policy and research background to the study, examining the Scottish legal system and its crucial role in ensuring that people with dementia, as individual members of society, are both protected and empowered. The chapter begins with a policy focus, providing an overview of recent policy concerns leading up to the Adults with Incapacity (Scotland) Act 2000, including the focus on social inclusion and access as key policy concepts. The next section is specifically focused on research and outlines the importance of accessing the perspectives of people with dementia as key users of the legal system. The imperative of examining the incapacity legislation from the user perspective is explored, recognising the barriers for the participation of people with dementia in both research and accessing policy. Finally, the issue of capacity is detailed in section 1.4.4 as a fundamental issue to both the implementation of policy and for the research questions.
1.1 POLICY CONTEXT: AUTONOMY AND INCLUSION
The first piece of legislation passed by the newly devolved Scottish Parliament was the Adults with Incapacity Act (Scotland) (2000). That this was the first Act passed is significant if one examines the principles underpinning the legislation:
any intervention has to be of benefit to the adult
the intervention shall be the least restrictive option
the present and past wishes and feelings of the adult have to be taken into account (so far as they can be ascertained), as do the views of the nearest relative and the primary carer of the adult, any guardian, continuing attorney or welfare attorney of the adult, and any person whom the sheriff has directed to be consulted
encourage the adult to exercise whatever skills he or she has concerning his or her property, financial affairs or personal welfare, and to develop such skills.
(Scottish Executive 2000)
Such an emphasis on individual autonomy is notable especially as the groups of people the Act aims to provide for are people whose abilities and opportunities to make decisions for themselves are being questioned and eroded.
In the 1990s and into the twenty-first century, policy developments, in a broad sense and in relation specifically to legal issues, have increasingly emphasised the importance of autonomy and individual responsibility. Countries such as New Zealand and the USA have all developed capacity-specific legislation to address the increasing concerns around protecting autonomy for people with reduced capacity. At a European level, Alzheimer Europe was responsible for writing a set of legal recommendations aimed at improving the legal protection and rights of people with dementia. These issues are all developed in policy environments that focus on social inclusion as the highest aim.
1.1.1 Social Inclusion
At a broad policy level, social inclusion has been highlighted as a key concept and aim for Scotland as a society (Scottish Executive 2000) with 'securing dignity for older people' being one of three key targets. Within the legal system the more specific strategies outlined in Access to Justice - Beyond the Year 2000 (Scottish Office 1997) aimed at increasing the participation of excluded groups and individuals and at reducing the barriers to justice for people who need the support of the legal system. Although this document was mainly concerned with the mechanisms for financial support for people trying to access the system, it was useful in outlining three key objectives of information, access and reasonableness.
"Briefly, the community need information about the justice system and how to use it. Individuals need to have access to effective forms of dispute resolution. Funding by the State should be provided where it is reasonable to do so to provide access." (1997: Executive Summary)
As the legal system becomes increasingly complex, information is essential and has to be accessible to a wide audience. Particularly important is information on where to go for advice and assistance; and sources of help, including financial help, to put their case. Access, the second key objective, is necessary to enable people to find the best ways to resolve any dispute or difficulty. Here again the financial support through legal aid can be crucial in overcoming access problems. Finally, the objective of reasonableness is cited in relation to cost and states that legal aid should not be an option where there are alternative ways of funding an action.
Whilst information on how people access the system is limited (Genn 1999), these key objectives at least begin to highlight the main barriers that some individuals may face when trying to get access to the legal system. To consider the social inclusion target of 'securing dignity for older people' (Scottish Executive 2000) from a legal perspective, the key concepts of access, information and reasonableness are useful through which to examine how the legal system meets the needs of older people in Scotland (particularly people with dementia). Our knowledge of who is using the legal system, for what reasons and in what ways is extremely limited for the general population. Surveys in England and Wales provide some indication of the problems leading to legal action (Royal Commission on Legal Services 1979) and how often people experience legal problems and the ways they try to remedy them (Genn 1999). Recent work has shown that up to 40% of the population will experience a problem requiring a legal remedy (Genn 1999), usually relating to faulty goods, money problems, injuries and work related health problems, difficulties with neighbours, and employment problems.
Although these patterns are interesting, they do indicate that the experience for most people accessing the legal system is related to 'complaint' type problems. Information on the area of law relating to protection and empowerment appears to be even sparser.
1.1.3 People with dementia
People with dementia are a significant part of the group of people requiring a system that will protect and empower. For the specific population of people with dementia in Scotland we have information on the uptake of some legal interventions designed to protect individuals. For example, annual statistics are produced on the number of guardianships appointed (Mental Welfare Commission for Scotland 1999). However, it is not possible to build a picture of who is using the system and in what ways, without having more in-depth information on the experiences of people with dementia. It is important that we develop an understanding of the ways in which people with dementia are using the legal system. The overall lack of data about the needs and experiences of people with dementia can lead to:
"a lack of context for evaluating proposals for change, and we lack the basic accounting data that might help us know whether new policies implemented have changed things for the better, for worse, or not at all." (Genn 1999:1)
The next section examines these policy issues from a research standpoint to explore why it is both important and useful to examine policy from the specific perspective of people with dementia.
1.2 THE IMPORTANCE AND USEFULESS OF RESEARCH INVOLVING PEOPLE WITH DEMENTIA
It is estimated that the number of people with dementia in the UK will have increased to 855,000 by the year 2020 (DOH 1997). Recent projections for Scotland alone estimate that there will be a 3.6% rise between 2001- 2006 (Alzheimer Scotland - Action on Dementia (ASAD) 2000) with this likely to increase to almost 70,000 people with dementia by the year 2005 (ASAD 2000; Scottish Needs Assessment Programme 1997). Across the UK it is estimated that one in five of people over 80 have a dementing illness. Given the unprecedented growth in the numbers of people aged 85 and over, the absolute number of people with dementia will increase (Melzer et al 1999).
People with dementia form an increasing proportion of the group defined as 'incapable adults'. For example, people with dementia are now the fastest growing group of people who are appointed a guardian under the Mental Health (Scotland) Act (Mental Welfare Commission for Scotland 1997, 1999).
Dementia, and the reality of living with dementia for increasing numbers of individuals, are issues rising quickly up most policy makers' agendas. Across Europe common policy preoccupations have been identified including enabling people with dementia to remain at home as long as possible, and facilitating individuals to retain maximum control over the support they receive (Marshall 1999).
The experience of dementia is typically associated with a stigmatised and stereotypical view of abilities and changes, in particular with individuals as 'losing their minds' (Sabat 1998). Such a view of people with dementia results in stereotypes being perpetuated by individual attitudes and through wider social policies. The legal system, prior to the implementation of the Adults with Incapacity (AWI) Act, is an example of how negative and exclusionary practices can be reinforced and illustrates the limited means of empowering adults attempting to access a more inclusive form of justice (Wilkinson 2001). However, the new legislation has the potential to be more inclusive, both through its attempts to ground the legislation in more positive underpinnings that highlight individual autonomy for as long as possible; and by intending to make the system more accessible at a practicable level through information and support systems. As this study took place prior to the implementation of the AWI Act, the focus of the work is on the unreformed system.
1.3 EXAMINING THE LEGAL SYSTEM FROM THE PERSPECTIVES OF PEOPLE WITH DEMENTIA
For particular groups of people the legal system can lead to them having fewer rights due to the tension in a system attempting to both empower and protect individuals. People with dementia are a key group through which to examine notions of how the legal system can enhance or reduce individual autonomy.
At a general level it is essential to examine changes within a system and to evaluate how close these reach their stated aims. Such evaluation needs to take into account the views of the users of the system and a key aim of this study is to provide a baseline picture of use of the legal system prior to the passing of the Adults with Incapacity Act. Such information will provide a sound basis for comparison with information gathered after the enactment of the legislation; and inform plans for implementation of the Act by providing information about people's access and information needs. Knowing the number and types of people with dementia who are accessing and, perhaps more importantly, not accessing the current legal system has implications for the successful implementation of the reforms. Furthermore, such information will assist in efforts to help improve access and, therefore, the processes of social inclusion and justice through the legal system (Scottish Office, 1999).
More specifically this study focuses on the views of a group of people who are usually considered 'incapable' of participating in policy and research. As the study is twofold it explores both the feasibility of the methods (can the views and experiences of people with dementia be gathered and useful?); and gathers specific data on more substantive issues around the patterns of use and the barriers and facilitators to effective use.
People with dementia experience a decline in the ability to reason and make judgements thereby affecting their ability to make informed decisions. As such, they provide a range of contexts in which to consider the effects of the use of the legal system. As people with dementia are a heterogeneous group with respect to cognitive capacity, they represent the full range of conditions likely to be manifested by people using the legal system under the Adults with Incapacity Act. Dementia is by definition a progressive disorder of intellectual functioning and as such people with dementia span the continuum of cognitive functioning. It is expected that the reformed system will offer more flexible and appropriate protection for people deemed incapable of making their own decisions. Part of this flexibility will be an emphasis on autonomy and the involvement of individuals in decision making for as long as possible. For people with dementia the increasing cognitive impairment presents a challenge to autonomy, and therefore tests the ability of the new system to take account of individual autonomy. For the new system to work it has to be able to accommodate this group of people and the challenges they present to it. In so doing it will also meet the needs of other groups of people who fall into the category of an adult with an incapacity, whether through a lifetime cognitive impairment, a sudden impairment such as stroke, traumatic brain injury, or through severe mental health problems such as schizophrenia.
In terms of autonomy the legal system presents opportunities for people to make legal decisions prior to a diagnosis, or in the early stages of the illness, whilst still cognitively intact. As the impairment increases, the system should still offer empowering opportunities for the person to undertake legal interventions. However, at the stage where the person is deemed incapable, legal interventions then become more paternalistic than empowering for the person with dementia (Wilkinson 2001). The experiences of people with dementia are clearly illustrative of the issues arising for the legal system where cognitive impairment and associated decision making takes place along a continuum of ability.
Whilst people with dementia are a key group of people through which to examine the effectiveness of the legal system, there are several methodological and philosophical issues that are important to consider.
1.3.1 Feasibility of including the views of people with dementia.
One of the fundamental issues is whether it is even possible to include people with dementia in both a research study and in accessing the legal system. Assessing ability to participate will be discussed more fully in the methods chapter, but the following section will outline the debates that examine if and how people with dementia can be included as participants in research and policy (see also Wilkinson 2002 for a review).
Historically, people with dementia are an excluded group based on the traditional stereotype of people who have 'lost their mind,' who are senile old people (Sabat 1998; Lyman 1998; Mills 1997). However, the last 10-15 years have witnessed a shift away from this negative, medicalised view of the experience of living with a memory impairment (Downs 1997; Cottrell and Schulz 1993). This has occurred within a shifting policy context which we describe in the next section, and also within a gradual shift in research and practice philosophy which we discuss towards the end of this section.
These shifts have occurred at policy, practice and research levels. Recent government policy including that around social inclusion does focus very much on the role of the individual in taking responsibility for themselves (Barnes 1997). The introduction of community care throughout the 1980s and 1990s (Department of Health 1989) focused on empowering individuals, in a service user sense, to become effective 'consumers' within a wider context of active citizenship (Barnes 1997). During the 1990s the New Labour view promoted the idea of a 'New Model Citizen' making rational decisions and behaving 'responsibly' (Rowlingson 2000).
In reality, individuals experiencing these policies in practice are probably not the 'ideal' citizen/consumer/decision maker upon which the policies are predicated. The rhetoric of increasing individual autonomy thinly disguises daily experiences of personal, social and economic barriers that hinder the individual from becoming such an idealised consumer of services such as the legal system. In turn, this can enhance a process of social exclusion rather than empowering the individual to engage with and access a system to meet their needs.
Concurrent with the rise of the individual consumer in social policy terms, the need to engage more fully with people with dementia as a group within society emerged. Increasingly, debates in the field of dementia research have paid more attention to the person themselves in recognition of the individual's self of sense, their rights, and the value to be gained from a concern with their perspectives (Downs 1997).
This shift in focus reflects the development of a more psychosocial model of explaining individual experiences of dementia as opposed to a medical model that focuses primarily on the disease rather than the individual. The debates focus on ethical reasons for taking a more person centred inclusive approach. Sabat (1998) asks,
"do we treat the afflicted as a 'semiotic subject' - one whose behaviour is driven by the meaning of situations and the ways in which he or she is treated by others - or as one whose behaviour is deemed incompetent and is simply the outcome of a disease process?" (1998:35)
The argument follows an ethical line by questioning a medical approach that fails to include individual experience and quality of interactions. This medical approach with a perception of the person as a disease leads to stereotyping and excess disability (Brody 1971). Sabat argues that to reduce excess disability requires a change in the way we think about people with dementia, to be able to see them as people who have valid experiences and whose behaviours are driven by meaning (1994). In work focusing on issues emerging for caregivers and mildly impaired people with dementia across the US, Post (1998) found that in the world of dementia there is no hegemonic place for the principle of respect for autonomy. He found that as the disease progressed, the ethics of care came to the forefront, although a positive element of this shift was the hope offered by people developing a culture of care that focused on 'being with' the person with dementia, despite the pressure to move away from people with increasing memory loss.
In addition to a fundamental ethical debate people have also highlighted the risks in not including people with dementia and in what wider society misses in not having the subjective experiences of individuals living with the illness:
"we are at risk of not delivering adequate care to our patients and their families. If we do not get to know our patients' experience of the illness beyond the results of medical, cognitive and functional tests and assessments, our clinical decisions will not represent patient needs equitably." (Cohen 1991:7)
The importance of including the person's perspective has been especially relevant in the rise of evaluations of services and there have been very recent and promising attempts to include the perspectives of people with dementia in such evaluations (Barnett 2000).
Early work indicates that people with dementia can take part and make valuable contributions to research. However, despite these promising arguments calling for a more inclusive approach, this has been slow to happen, partly because of methodological concerns around how to safely and effectively include people (Wilkinson 2002; Hubbard et al 2002). It is to these methodological concerns that we turn in the following section.
1.3.2 How can we include people with dementia?
As the moral and intellectual arguments for including people with dementia become more established, the emerging difficulty is a practical one of how to include people with dementia. Stalker et al (1999) note that many methods and concerns can be transferred from the field of learning disabilities, especially in relation to the use of qualitative methods and processes for consent. In most cases, the methods chosen have been qualitative in order to explore the subjective experience of individuals (Gillies 1995; Keady 1999; Pratt and Wilkinson 2001). Clarke and Keady (2002) also provide a useful review of recent studies that have attempted, through a variety of methods, to ascertain the views of people with dementia.
One of the main concerns around gathering the perspectives of people with dementia has been the degree of cognitive impairment. Influential work by Lyman (1998) challenges the idea that only mildly impaired people can participate. Work exploring the narrative identity of people with dementia (Mills 1997) also found that people with moderate to severe cognitive impairment could recall emotional memories. Wells and Dawson (2000) in a study of 112 male veterans with dementia in the US found that individuals retained abilities in the areas of self care, social interactions and interpretative abilities, although abilities relating to self care and IADs were retained longer than in areas of recall and language. Furthermore, abilities were differently affected and varied considerably across subjects, which is consistent with evidence pertaining to cognitive changes in dementia. Whereas some people kept abilities perfectly, others lost them altogether, although some of these results might be explained by excess disability. People with dementia themselves have attempted to describe their lived experiences (Davis 1989; McGowan 1993).
Beyond these attempts most of the existing work tends to focus on evaluating services (Cheston et al 2000) using questionnaires and structured interviews; semi-structured interviews; observation; and focus groups (Sperlinger and McAuslane 1994; Goldsmith 1996; Davis 1998; Smallwood 1997; Brooker 1995; Barnett 2000). Implicit in all of these attempts is the issue of power, as highlighted by Reed and Payton (1998) in a study that explored the experiences of older people moving into nursing and residential homes. By aiming to privilege the voices of the older people this work had to engage with the power inequalities inherent in the research principles and design. These power inequalities in research reflect and extend beyond the researcher/researched and into their relative positions in society where older people are subject to many forms of ageism through frequently applied negative stereotypes due to their age (Bytheway 1995).
Whilst it is essential to include the views of people with dementia, it is also important to recognise and take account of these inherent power inequalities and to allow the care and time needed to enable people to fully participate (or not as they choose).
The questions 'should we?' and 'how can we?' include people with dementia are fundamental to the study. From an examination of the literature we can see that there are moral, philosophical and methodological arguments for why it is important to have an understanding of the views and experiences of people with dementia. More recent research indicates that it is possible, in a number of ways, to access these views and experiences in ways that focus on the individual with dementia.
An understanding of the moral and methodological debates provides a basis from which to now examine these issues in specific relation to the patterns of use of the legal system by people with dementia and the context in which we attempt to do this.
1.4 PEOPLE WITH DEMENTIA AND THE USE OF THE LEGAL SYSTEM
In examining patterns of use or non-use of the legal system by people with dementia it is important to have some understanding of why and how they would be attempting to access the system. It is possible to speculate that people with dementia would be accessing the system to either undertake 'anticipatory' (Rowlingson 2000) interventions such as appointing a power of attorney to make their future decisions; or to be the focus of a passive intervention, such as having a guardian appointed for them. They may also be seeking advice without taking further formal action. Underlying these routes into the system are decision making processes. In this section we explore the process of decision making and begin with a discussion of the importance of understanding how people engage in future planning.
1.4.1 Future Planning and Decision Making
How people engage in or avoid making plans for the future is a key element of understanding how and if people use the legal system. Recent work examining the extent to which people think about and plan for financial and social aspects of their future lives found that most people were 'present-centred' giving very little thought to future or past (Rowlingson 2000). Rowlingson described three dimensions to future planning: optimism/pessimism; anxiety/lack of anxiety; and control/lack of control. People with 'short term horizons', who did not make plans very far into the future, were linked to feelings of insecurity and powerlessness over the future. Where people did engage in some forward planning, a complex picture emerged where the planning could be over a short, medium or long term; be active or passive; be precautionary or anticipatory; be detailed, general or vague; and finally be effective or ineffective.
Rowlingson places her study of future planning in the general population in a context of the New Labour focus on a 'model citizen' engaging in informed and rational responsible decision making. Such a model and context places great emphasis on individual autonomy and responsibility, but there is increasing evidence to show that this is not how people engage in decision making.
In particular an emphasis on individual autonomy misses the role of intimate relations and the role of carers and friends in both giving advice and supporting decision making and in supporting and enabling autonomy to function meaningfully on a daily level (Kapp 1999; Jecker 1990). Before examining these supportive roles in more detail it is necessary to discuss diagnosis and its importance in facilitating decision making and future planning.
An important aspect of the Adults with Incapacity Act is the opportunities it will present for people with dementia to undertake planning for their future. Partly as a result of the introduction of anti-dementia drugs (e.g. Aricept), people are now having greater opportunities to plan and make decisions about financial management and welfare (Fearnley et al. 1997). This, in turn, could lead to an increase in the uptake of legal interventions. However, it is unlikely that individuals will engage in future planning if they are not aware of having an illness that will present them with particular care and support needs in the future.
The practice of disclosing a diagnosis of dementia to the person with dementia creates a great deal of debate, particularly the question of 'to tell or not to tell'. Until recently this debate focused on the views of health professionals and carers (Maguire et al. 1996; Rice and Warner 1994). Arguments against diagnosis disclosure include the distress it may cause for people with dementia (Drickamer and Lachs 1992). These negative claims seem to be reflected in low disclosure rates and wide variation in practice. In Scotland almost half to two-thirds of general practitioners do not tell the person their diagnosis (Downs and Rae 1996). More recent studies also show an ongoing reluctance to disclose a diagnosis of dementia to patients (Audit Commission 2000; Vassilas 1999). However, knowledge of a diagnosis would allow people increased opportunity for support and the ability to make plans (Fearnley, Weaks and McLennan 1997).
People with dementia themselves have been under-represented in research, particularly in relation to the issue of diagnosis disclosure (Pinner 2000). The views of older people without dementia (Holroyd et. al. 1996) have been sought on this issue, as have the views of people with dementia who did not know their own diagnosis (Marzanski 2000). However, the views of people with dementia who have experienced diagnosis disclosure were absent from research until a recent study in Scotland (Pratt and Wilkinson 2001). Based on the views of 26 people, who had recently been given a diagnosis of dementia, this work found that people with dementia felt that it was important to be told they had the illness. Their reasons were not only so they would be able to plan for the future, but also to have a fundamental understanding of the changes they were experiencing in themselves (Pratt and Wilkinson 2001). Other work with people with dementia has also highlighted the importance of knowing a diagnosis for 'making sense' of early experiences of memory loss where individuals can interpret and ascribe some meanings to the changes in themselves (Robinson et al 1998). This requires early referral, sensitive and ongoing support and further research. These personal views are reinforced by more intellectual arguments, in particular those proposed by Post (1998), who believes:
"Diagnostic truth telling is the necessary beginning point for an Alzheimer Disease ethics of autonomy" (1998:73)
It is essential to begin with the understanding that a diagnosis of dementia does not mean that the person is unable to make decisions (Bertrand and Willis 1999). Whilst a diagnosis and understanding of the prognosis of the illness is an essential prerequisite for future planning, the support of people around a person with dementia is also a key element of decision making and planning for the future and it is to this we now turn.
1.4.3 The role of carers and friends
The contribution made by informal carers in the UK is given formal recognition in the Carers Act (1995) which focused attention on the important and often difficult relationship between informal carers and more formal services and paid carers. However, an exploratory study about the realities of caring for people with dementia highlighted how the Carers Act recreated a lack of clarity about positions of unpaid carers (Gillies 2000). Key difficulties were the conflicting needs of carer and care recipient and the perceived lack of recognition of informal, unpaid carers as being experienced and skilled in the care of their relatives. For the purpose of an examination of access to the legal system it is important to remember the role of a carer in providing support to an individual with dementia and especially their role in preserving the identity of the individual.
However, where an unpaid carer is present to support the person with dementia there are concerns and costs. Having to make decisions is a main contributor to carer stress (Wackerbarth 1999). This stress occurs throughout the illness but decisions made in the later stages of dementia in particular cause high levels of emotional stress. End of life decisions by family members are made in an emotional climate of overwhelming burden and guilt, with death being experienced by the carers as both a tragedy and a blessing (Forbes et al 2000). Often family members were unprepared to make end of life treatment decisions and lacked the informational and emotional support of a consistent provider to help with decisions (Forbes et al 2000).
At all stages of caring for someone with dementia, carers require assistance in processing difficult and painful emotions, understanding the trajectory of disease and what decisions they might need to make. A model of dynamic decision making (Wackerbarth 1999) shows that support is likely to result in informed decisions and decreased guilt. This model is seen as the first step toward developing interventions to provide the support needed to take on the role of decision maker in planning for the future and making informed decisions.
However, such a model focuses on shared and proxy decision making and there are debates around people making decisions on behalf of others, especially where the others have impaired decision making. Indeed this is the debate in which the Adults with Incapacity legislation sits: who, and on what occasions, can people make decisions on behalf of others?
A US study of the use of substitute decision makers by cognitively impaired older people (living in rural areas) (Weiler and Buckwalter 1994) found that only 12% of the sample of 335 people had a legally appointed person to support or make decisions for them. Of this 12% with a substitute decision-maker, 46% had a power of attorney and 13% had a guardian. On the whole the substitute decision-maker tended to be an adult child (41%), with only 7% naming their spouse and 5% naming a mental health care provider. The high use of the power of attorney system means that people have thought ahead to the future to be able to personally select a substitute decision-maker. Interestingly the study found:
"Regrettably none of the records indicated that the mental health provider had assessed the client's cognitive ability to understand the consequences of the delegation of authority, although it was not legally necessary to require a mental health assessment for that decision. Therefore it was possible that the designation of Power of Attorney was merely an expedient and unnecessary manoeuvre by family members to deal with financial concerns."
1.4.4 To decide or not to decide for others: competency and the consequences
People with dementia are, for the most part, used to taking their own decisions, either alone or in relation to others, e.g. family members (Collopy 1988; Brown 1990; Kapp 1991). With the gradual decline in cognitive abilities this control over decision making is eroded and people with dementia become increasingly disempowered within and by decision making processes. In looking at decision making and the ways in which people with dementia engage in and can be supported in decision making, the issue of capacity or competency 1 is key. Topical issues for people with dementia, the legal system and decision making include: how competency/capacity is assessed; how the complexity of social policy and the emphasis on inclusive practices place new demands on competency; and how best to manage situations where competency is compromised.
1. For the purpose of this literature review the legal term competency is used interchangeably with the more common term of capacity.
Wilber and Zarit (1999) describe competency as a psychosocial construct as well as a legal term. Applebaum and Grisso (1988) outline four domains for legally determining competency:
the ability to communicate relatively consistent or stable choices;
to understand basic information about choice;
to evaluate reasonable implications or consequences;
and to use reasoned process to rationally weigh risks and benefits of choices where the focus should be on process not actual choice made.
In an examination of how to maintain the self determination of people with reduced decision making capacity in health care settings, it was found that determining capacity was often lengthy and expensive and "for health care professionals it is often easier to question a patient's competency than to recognise a legitimate conflict of values" (Nicholson and Matross 1989:235).
At the same time it is recognised that capacity can fluctuate and is intermittent and context specific (Buchanan and Brock 1986; Scottish Executive 2000). The determination of capacity/competency represents value choices. For the purposes of the Adults with Incapacity legislation, incapacity will be defined loosely as:
"incapable" means incapable of:
(a) acting; or
(b) making decisions; or
(c) communicating decisions; or
(d) understanding decisions; or
(e) retaining the memory of decisions,
(Scottish Executive 2000)
Clinical determination and consequences are inexact and in a recent survey of practitioners across Scotland (Astell and Wilkinson 2000) it was found that across and within professional groups methods of assessing and understanding capacity were extremely varied. Indeed, late in 2000 a surprisingly high number of participants remained unaware of the Adults with Incapacity legislation.
1.4.4.b Capacity and decision making
Types of decisions, i.e. the context specific nature of decisions, are important. Studies have been carried out on the ability of people with dementia to make decisions on medical, consent, making a will, and daily living issues (Bertrand and Willis 1999; Kapp 1999). This work, although based in the US, demonstrates that cognitively impaired people and caregivers perceived functional decline similarly and that even people with moderate-severe dementia had insight into their impairment suggesting self assessments by impaired subjects offer important information on everyday functioning and cognitive capacity (Bertrand and Wills 1999).
A study focusing on the consequences of incapacity when older individuals who require surrogate decision making do not have family members or friends available to become their guardians found few differences between professional and family guardians. Caution must be taken when discussing this study as it was based in the US, however, wards with professional guardians were about half as likely to be living in the community than those with family members as guardians (Reynolds and Carson 1999).
Even where there are family members available to support the person to make decisions and to make decisions on their behalf, there are significant problems with this. In allowing for proxy decisions Berghmans (1998) highlights ethical hazards, especially end of life decision making. Proxy decisions can be made on the basis of 'sub judgement' where the proxy decides as the patient would have, underpinned by the concept of respecting autonomy of individual, or by the principle of 'alternative guidance' or in the best interest of the individual. He argues that basing decisions on sub judgement is seriously flawed because of the potential conflicts between presumed wishes and current interests. The sub judgement would be based on the external point of view of the patient's wishes whereas the best interest principle would focus on the internal view, i.e. what the patient would want if they would state views now (Berghmans). The main difficulty in any case is the problem of evidence in reconstructing an individual's wishes unless they have clearly stated them in advance. However, even where a written advance directive or statement of choice has been made in advance there are still concerns (Dimond 2000; Berghmans 1998; Fullbrook and Wilkinson 1996; Rashid 2000).
The use of advance directives (or living wills) is well established in US legislation but in the UK no specific legislation exists despite a Law Commission independent review for England and Wales in 1995. However, Common Law has supported an advance directive (living will) as binding (Airedale NHS Trust v Bland 1993). Rashid (2000) outlines the more philosophical implications of the use of advance statements against a context of a shift away from paternalistic care towards patients taking more responsibility for their own health. While such a shift is viewed in terms of a model of individual rights, values and personhood, it is difficult to see much evidence of such a move on a more practical level as yet. A study of 74 inpatients, aged 65 or over, at two London hospitals recently found that 82% had never heard of advance directive or living wills and of the 13 participants who had heard of them only three could define them (Schiff et al 2000). Nevertheless, despite the lack of knowledge, many of the participants expressed an interest in the concept and 92% of them indicated that they would not want their lives prolonged by medical interventions. Here it seems more a problem of lack of awareness of the existence of and ways of using interventions rather than a lack of ability to consider and make a decision (although this sample were not cognitively impaired). In Scotland there is a long history of legal interventions which provide a formal system for assisting or taking decision for people with incapacity and these are briefly discussed in the next section.
1.5 FORMAL SUPPORT FOR DECISION MAKING
Once incapacity has been determined then supported decision making becomes important. Prior to the Adults with Incapacity legislation a selection of legal interventions are in place, with the most common option available to people with dementia in Scotland being a curator bonis, guardianship or enduring power of attorney. Each has quite separate purposes, with financial decision making falling within the remit of curator bonis or enduring power of attorney, whilst personal and welfare decisions become the responsibility of guardians appointed by the sheriff under the Mental Health (Scotland) Act 1984.
As no one person can usually assume automatic legal rights over another person over 16, the legally appointed roles could become a necessity. However, the existing legal interventions provide an unsatisfactory and fragmented approach to empowering or protecting people with dementia (Scottish Office 1999). It is especially problematic that each intervention only covers either welfare or financial decisions, yet these decisions often require the consideration of both areas at the same time. Each intervention also requires separate applications to different courts, which is unduly complex. In addition, the inflexibility of each intervention could mean the individual abilities of the adult in question, which may differ across contexts, cannot be taken into account. This results in the individual with dementia being disempowered through lack of opportunity for self-determination and the inability to protect themselves from the limiting attitudes of others (Wilkinson 2001).
The implementation of the AWI Act begins on 2 April 2001. This legislation is innovative and stands apart from the legislation governing England and Wales (Crichton 2000). It remains to be seen whether its innovative principles result in any significant changes to the inclusivity of the legal system for people with dementia. This study is an attempt to describe and address some of the systematic and attitudinal barriers to people with incapacity accessing the legal system. Examining the use and non-use of the current system in this way allows a full exploration of important issues such as inclusion, empowerment, competency and decision making. It also provides an opportunity to test the methodological feasibility of including people with dementia in such a study. In exploring the experiences and perceptions of legal actions and needs for people with dementia prior to the implementation of the new legislation, baseline information is provided for later comparison. It will also inform implementation of the reforms to allow the legal needs of people with dementia and their carers to be met most effectively.
People with dementia are a growing group of people in Scotland, both in terms of numbers and in policy emphasis and imperative (Alzheimer Scotland 2000). The nature of their illness means that their decision making capabilities are eroded and they experience a loss of autonomy that can mean they need support in managing their daily affairs. To date we have very little understanding of what these changes can mean to individuals and in what ways our social policies around care and the legal system can support or reduce individual decision making opportunities. At a time of significant change and reform in the legal system, this report presents data on three research questions:
1. Describe the characteristics of people with dementia and the degree to which they are using the legal services in Scotland.
2. Identify the facilitators and barriers to the effectiveness of the legal system for people with dementia.
3. Provide recommendations for practical ways in which the Adults with Incapacity legislation will be most accessible for people with dementia.