Recovery approach to the care of people with dementia: decision making and ‘best interests’ concerns

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Recovery approach to the care of people with dementia: decision making and ‘best

interests’ concerns

G . M A R T I N b sc ( h o n s ) m a ce r t ed Associate Lecturer, Open University, Milton Keynes, UK

Keywords: dementia, Mental Capacity Act, person-centred care, recovery Correspondence:

G. Martin

25 High West Road Crook

Co. Durham DL15 9NR UK

E-mail: [email protected] Accepted for publication:

30 March 2009

doi: 10.1111/j.1365-2850.2009.01446.x

Accessible summary

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Dementia and decision making.

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Relevance of the Mental Capacity Act 2005.

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Recovery approach applied to people with dementia.

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A model for change.

Abstract

The concept of ‘recovery’ has been central to the discussion of the care of people with mental health problems in recent years, in this paper these ideas will be applied to the care of people with dementia in an attempt to focus nursing practice on the notion that it is possible to involve this group of patients in their own decision-making processes.

It is acknowledged that this is not always possible without support and advocacy by nurses and other carers who must take on board the need to arrive at solutions to problems or change that are in the person’s best interests. The provisions of the Mental Capacity Act in 2005 arekeyto this discussion, and ways forward are recommended, which include a nursing model for change, in an effort to bring together the concepts addressed in this paper. The conclusion reached is that the recovery approach has some difficulties when applied to people with dementia but it remains an essential aspect of the care process which, together with the provisions of the Mental Capacity Act, could bring about radical improvements to the lives of this group of vulnerable people.

Introduction

Recovery approaches to the care of people with mental health problem is subject to wide discussion; however, current literature rarely addresses the application of this approach to the care of people with dementia. This paper seeks to redress this by attempting to apply the concepts of recovery to the decision-making process and to decisions made in the ‘best interests’ of this group of people. The impact of the Mental Capacity Act (MCA) (2005), which came into force in 2007, has yet to be fully understood in relation to the care of people with dementia and there are implications for nurses around decision making and autonomy. New initiatives linked to the notion of ‘recovery’ will need to be evalu- ated to ensure that health and social care practice is

current and focused upon the best interests of people with dementia.

The ideology of the care of people with dementia has gone through some radical changes in the last 10 years.

Taking as a starting point the publication of Tom Kit- wood’s (1997) bookDementia Reconsideredit can be seen that the ideas of person-centred care have underpinned most of the work that has been published subsequently in this area (Morton 2001, Brooker 2006, Freeth 2007, Portner 2007). However, the experience of people with dementia in both residential and community care has not always seen this new approach reflected in their day-to-day lives. Health and social care both statutory and under private provision very often remains focused around a

‘medical model’ agenda, which sees the dementia first and concerns itself with the physical needs of the person

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ignoring psychological, spiritual and social needs. A recent report from the All-Party Parliamentary Group on Demen- tia (Wright 2008) found that antipsychotics are widely prescribed to help control behavioural and psychological symptoms of dementia despite these drugs only being licensed for use in schizophrenia. This has lead to unnec- essary side effects including sedation, dizziness, tremors and early death. These findings have been supported by a further study that found that long-term use of these drugs led to significant deterioration in the thinking and verbal skills of patients (Ballardet al.2008). The All-Party Group (Wright 2008) found poor levels of staff training and exclu- sion of family and friends from decision making in contra- vention of the MCA. With this in mind it is important that the care of this group of vulnerable adults is changed to take account of new initiatives, which seek to improve the processes of care and enhance the quality of life. This paper will explore the decision-making processes in the light of these new initiatives. The aim is to identify a way forward that can be used within care settings that serves to develop and compliment a person-centred approach to care.

Mental Capacity Act

Among the changes in recent years that have had an effect on the care of people with mental health problems is the MCA (2005). This Act’s key principles are:

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a person must be assumed to have capacity unless it is established that he/she lacks capacity;

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a person is not to be treated as unable to make a decision unless all practicable steps to help them to do so have been taken without success;

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a person is not to be treated as unable to make a decision merely because they make an unwise decision;

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an act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in their best interests;

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before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action. [MCA 1(1)]

As a result of these provisions nursing practice will have to ensure that autonomy and choice are preserve for as long as the person’s condition allows. People with dementia can no longer be assumed to be incapable of making their own decisions on the basis of their diagnosis alone. A full assessment of capacity should be carried out to ensure that people with dementia are given the oppor- tunity to make decisions for as long as possible. The Act’s principles now open the way for radical changes in the

way this group of people are cared for and, more centrally, involved in the decision-making process. The MCA states that someone is unable to make a specific decision if he/she has an ‘impairment of or disturbance in the functioning of mind or brain’ [MCA 2(1)], which leads to the person being unable to understand, retain, use or weigh up information as part of the decision-making process (Dunnet al. 2008). This would of course include the inability to communicate decisions. A further provision of the act is that people can now officially nominate someone, through a lasting power of attorney, to make their decisions for them at a time when they may have lost the capacity to do so [MCA 1(9)].

The key point is that, should this be the case then any decisions made on that person’s behalf must be in his/her best interests [MCA 1(5)]. Clearly in many cases ‘substitute’ decision-making procedures, in other words decisions made by others, will need to be recorded as such to meet the requirements of the MCA (MCA code of practice para 6.25; 6.34). The right to appoint an advocate or donee is fundamentalto this process and that person will have to be involved in any major decisions that take place. A further important aspect of the act is that people will be able to make plans for their future health and welfare under advanced directives, and these must also be taken into account when decisions are being made [MCA 1(24)].

Recovery approach applied to people with dementia According to the Joint Position Paper ‘A Common purpose:

recovery in future mental health services’ (Care Services Improvement Partnershipet al.2007), there is a particular need to work out the implications of recovery thinking in the most difficult of circumstances, where choice and responsibility may be most compromised. It is felt that promoting the hope of recovery for everyone is false and unrealistic. However recovery must not be confused with cure, and there may be limits to the application of a recovery orientation in situations of steady deterioration. There is not a universally accepted definition of recovery, but in the main it relates to the ability to live a more or less independent life even if symptoms remain (Care Services Improvement Partnership et al. 2007). Centrally the concept of personal recovery is related to considerations of how to live well in the context of long-term mental health conditions such as dementia. Ideally recovery is not just about what services do to or for people, it is also what people experience themselvesas they become empowered to manage their lives in a manner that allows them to achieve a fulfilling, meaningful life and to contribute to a positive sense of belonging in their communities [National Institute for Mental Health in England (NIMHE) 2004].

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This definition of recovery is sometime difficult to apply to people with dementia, and NIMHE do modify this when considering this group of people. They say the aim, in this situation, is to ‘recover optimum quality of life and have satisfaction with life in disconnected circumstances’. This aspect of the recovery approach is just one aspect of a wide ranging set of factors that have been suggested by various people (Coleman 2004, Roberts & Wolfson 2004, David- son 2005, Reisner 2005, Shepherdet al.2008). The main problem of trying to apply these concepts to people with dementia is that there is a strong element of self-care inherent in these ideas which, it could be thought, would be impossible to work with people whose cognitive ability is impaired. An important model for consideration here is the Tidal Model, developed by Barker & Buchanan-Barker (2005). This Model focuses on the continuous process of change inherent in all people and seeks to reveal the meaning of people’s experiences, emphasizing the impor- tance of their own voice and wisdom. As with the other models above-mentioned it aims to empower people to lead their own recovery rather than being directed by professionals. The model can be distilled into Ten Commitments including ‘valuing the voice of the person’, ‘respecting their language’ and ‘learning from the person being helped’.

These commitments should be incorporated into the philosophy of the person-centred approach discussed in this paper.

In the light of these various models it is important to now try and develop an approach that will work for people with dementia. Repper & Perkins (2003) have produced a useful model that can be modified to meet the needs of such people (Fig. 1).

Repper & Perkins (2003) have highlighted the impor- tance of social inclusion in the model for mental health

practice, and this diagram shows that this is a complex process that may be possible to apply to people with dementia in some circumstances. Each of the three areas, which are interdependent, is crucial to the process of recovery, and they need to be considered in the light of the barriers that arise when considering the facilitation of recovery. The most difficult area to apply is that of ‘facilitating personal adaption’. It is clear that such adaption must come from the person themselves to adjust their life style to meet changing situations and demands. This process requires a certain level of awareness and cognitive ability to help that person think about and implement such change. Clearly this may not be available to everyone with dementia, and nurses will need to strive to maintain and optimize each individual’s abilities for this part of the process to be effective. To consider a way forward here the real life experience of people with dementia and the progress that has been made so far within a person-centred framework must be examined. Trying to change the culture of care has been one of the most problematic areas to achieve and maintain. If a radical change of culture is to be achieved then, what Kitwood (1997) has called ‘rementing’

or recovery may take place. This is a controversial notion, but we can see from some of the studies that have taken place small changes that may indicate that such a process is possible. For example, Martin & Younger (2000) showed that over a 6-month period in an initially oppressive care setting after a cultural change, one resident who was sleep- ing most of the day became alert and able to feed himself (see Case Study 1) and other residents ‘were much more involved in the decision making, given choices at lunch time . . .’.

Case Study 1 – Ned

A 76-year-old man in moderate stages of dementia, Ned, had displayed ‘aggressive’ behaviour that was a challenge to the carers and as a result was prescribed the antipsychotic drug Risperidone. The dose was increased after 4 weeks when his behaviour became a ‘problem’

again, probably because of tolerance to the drug. The result was that he sat in a chair all day with his eyes shut, the only stimulation he received was at meal times when he was fed in the chair, and at bed time. Following an audit of the care setting by using Dementia Care Mapping (Martin & Younger 2000), his lack of stimulation was evident in the results, and so his medication was gradually stopped. The occasional ‘aggression’ that returned was now seen as a means of communicating a need and when possible these needs were met. Over the following 2 months the aggression gradually reduced, he began to feed himself and take notice of his surround- ings, but more importantly he became able to make decisions about his day-to-day care.

Figure 1

Aspects of recovery (Repper & Perkins 2003)

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These changes while not radical in themselves may give an indication of the way that aspects of personal adaption could become a reality, helping the person to recognize skills and gain control over their lives.

A key area of the Repper–Perkins model is ‘creating hope-inspired relationships’, many of the aspects of which have been addressed by Kitwood (1997) and by Barker &

Buchanan-Barker (2005), including valuing the person, listening to the person, accepting the person’s experience and believing in the authenticity of the person’s experience all central to a person-centred approach to care. The idea of listening to the person is not just about what they are saying but what the words and actions may be indicating to the listener. Statements such as ‘I’m waiting for my father’

who is long dead may mean that the person is feeling lonely, unloved and insecure. To believe in the authenticity of the person’s experience it is important to understand the way that ‘challenging behaviour’ can be a form of communication as in the case study aforementioned. Continual walking round or sudden aggression should always be viewed as ways of communicating a need (Wright 2008).

The aim is to transform the relationship between the person with dementia and the nurse into one of greater understanding, heightened communication and mutual trust. Finally ‘promoting access and inclusion’ needs to be akeyplank in the recovery process so that the person is not isolated or unnecessarily institutionalized. People with dementia should have access to roles relationships, activi- ties and resources, including material resources. All these areas need to be adopted if practice is to move forward and embrace the concept of ‘recovery’ for people with dementia.

Areas of change

Clearly it is not enough merely to recommend a model and expect it to be taken up. Over the last 10 years the move to person-centred care has been patchy, and the pace has been slow. Ways of moving the process forward must be considered, and two areas of change are worth mentioning here.

The MCA and the Mental Health (Care and Treatment) (Scotland) Act 2003 state that every person with a mental disorder has a right of access to independent advocacy (http://www.nes.scot.nhs.uk/mhagp/eight.htm). People with dementia need to be able to agree on an appropriate person who can be a family member, friend or volunteer.

Under the provisions of the MCA, when a person becomes unable to make his/her own decisions this nominated advocate would need to be consulted to ensure that any decisions made were in the persons best interests. The real problem arises when there is an imbalance of power, perhaps in a care home, where this may lead to decisions

being made in the best interests of the staff rather than in the interests of the resident. The second area of change is recommended by Dunnet al.(2008); they recommend that there be new National Minimum Standards incorporating the MCA’s provisions in an effort to ensure that the Act is implemented fully. Dunn et al. further recommend that there needs to be training of carers on facilitating such decision making to ensure the care regime ‘empowers and protects residents’. This has been supported by the All- Party Group (Wright 2008) who state that ‘Dementia training should be mandatory for all care home staff’ and that the use of antipsychotics must be included in MCA training (Wright 2008, para 91). Staff would need a clear understanding of the way forward and how to achieve it for the recovery approach to work. So there is a need to ensure that levels of empowerment and patient autonomy are built into the system of care for change to be lasting. Although it is clear that some level of empowerment can be possible with a person-centred focus to care (Martin & Younger 2000), this alone may not be enough to meet the demands of the recovery agenda.

Davidson & Roe (2007) point out a further aspect of the problem that they call ‘recovery in serious mental illness’.

They say that for many their ‘treatment’ will produce only limited success. So, for example drugs such as Donepezil may halt the progression of the illness for a year or so, but the underlying condition will remain. Because of this Davidson and Roe are suggesting a different use of the concept of recovery to meet the needs of groups of people in this situation. Not just ‘treating’ the condition but planning ways that a person can live with it. An active advocacy system coupled with a supportive environment would help to minimize the destructive impact of the illness while simultaneously identifying and building the person’s strengths and interest in order for the person to recover optimum quality of life and gain satisfaction with life (NIMHE 2004). Davidson & Roe (2007) maintain that

‘living a meaningful and gratifying life within the limits imposed by the disability remains . . . a productive avenue for exploration’.

Areas of concern

Two areas of concern need to be addressed; first the pre- vailing medical model approach to care needs to be challenged. This philosophy only serves to meet the needs and demands of the system rather than those of the people with dementia. Person-centred approaches must always be employed, and these include focusing on people rather than services, emphasizing strengths rather than deficits and perhaps, most importantly, fostering collaboration between those who need support and those who support them as an

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alternative to coercion (Case study 2). Tranquilizing drugs should only be prescribed for the benefit of the person and not merely to control behaviour. Such drug therapy would need to be justified or seen as a form of abuse of human rights when given inappropriately (Wright 2008). The Case Study 1 given earlier from Martin & Younger (2000) of the man who showed improvement over a 6-month period was because of the radical reduction of his medication as much as it was to the implementation of the person-centred approach.

The second consideration is the need to take a realistic standpoint. Peyser (2001) cautions against taking the ideas of recovery too far as illnesses such as advanced dementia can subvert the thinking process to the point that the person’s self is taken over by the disease. It is then difficult to bring about empowerment and collaboration. Similarly Munetz & Frese (2001) feel that for such people a paternalistic, externally reasoned treatment approach would seem to be necessary. However this needs to viewed with caution, and the individual’s best interests need to be protected in line with the provisions of the MCA outlined above.

Case Study 2 – Mary (compilation from various sources) Mary is an 82-year-old woman who had communicated very little verbally for about 2 years; the care staff described her as ‘cooperative’ and ‘no trouble’. She was able to nod her head in agreement and would put her arms out if made to do something she didn’t want to.

Her level of capacity was assessed, and it was decided that she was unable to make all but basic decisions. It was decided to move her from the care home she was in to a specialist unit that cared for people with advanced dementia. Her daughter who visited about once a week was informed that this would be in her best interests.

The daughter visited the new unit but was unhappy with the level of care and worried that her mother would not settle well in a new environment. The professionals, however, decided that the specialist unit would be more suited to her care needs, and she was moved the following week. Mary failed to settle into the new environment and after a short illness died 2 months following her change of location.

A nursing model for change

In an effort to summarize the concepts discussed and to clarify the main areas of relevance to the different ‘stages’

of dementia, a model is outlined, which has incorporated the main aspects of the MCA and the philosophy of person- centred care to help produce a recovery approach that can be used in a realistic way for people with dementia (Fig. 2).

The three categories above-mentioned are, of course, fluid, and there are no rules about the signs and symptoms for each stage. It is clear, however, that the recovery approach would work best in the mild and to a lesser extent, the middle stages of the illness when the person can make their own decisions and a good quality of life and well-being can be aimed for. The advocate or decision supporter should be agreed in line with the provisions of the MCA, and cholinesterase inhibitors started [National Institute for Health and Clinical Excellence (NICE) have recommended that these drugs are only given to people in moderate stages of dementia; this decision is being challenged by the Alzheimer’s Society Newsletter (2007)]. In the early stages a regular cognitive assessment may need to be put in place, perhaps through the local memory clinic so that any decline in function can be monitored. Each case must be examined

Figure 2

Dementia ‘recovery’ approach. MCA, Mental Capacity Act

Mild Dementia

• Apply the principles of the MCA

• Assess function and capacity

• Agree an advocate/donee

• Commence cholinesterase inhibitors with agreement of client

• Adopt a person-centred planning approach

• Collaborative working

• Supported decision making when necessary Moderate dementia

• All the above plus

• Regular cognitive/functional assessments

• Consultation on decisions with advocate as necessary

• Supported decision making even if mistakes are made Severe dementia

• Joint decision making in the person’s best interests

• Medication prescribed only for the benefit of the person

• Continued cognitive assessments to monitor for change

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from a cognitive, behavioural and functional perspective to determine specific decision-making capabilities.

Once it is thought that the middle stage of dementia has been reached, this assessment would need to be more regular to monitor change and the advocate may need to be involved in care planning and decision making more centrally. Person-centred planning is important in this process as it replaces more traditional outmoded styles of assessment and planning that are based on a medical model approach to people’s needs. (Sweeney & Sanderson 2002).

When the more severe stage of the illness has been reached then a more ‘paternalistic’ approach may be necessary (Munetz & Frese 2001), but still within the param- eters of the MCA’s code of Practice (5.13) this would include:

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as much participation as possible in the decisions regardless of lack of capacity;

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taking into account the person’s past and present wishes, feelings, beliefs and values, (and, in particular, any relevant written statement made when he/she had capacity);

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taking into account the views of significant others and centrally the appointed advocate where one is in place;

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medication only prescribed in line with the recom- mendations of the All-Party Parliamentary Group report (Wright 2008).

These principles may have helped in the case of Mary above-mentioned as her past should have been taken into account, she appeared happy and functioned well in her original setting, and her daughter’s wishes should have been taken seriously. Had this been done the outcome may have been different. These considerations must be adopted in order to determine the person’s best interest around aspects of care and treatment and to facilitate the highest level of participation in the ‘recovery’ process.

The fear is that some of these changes are easily side- stepped, and history has shown that it is difficult to sustain major change in some care environments. As a result there is a need to monitor and audit these changes if standards are to be upheld. There are several tools that can do this not least the process of Dementia Care Mapping (Younger

& Martin 2000, Martin & Younger 2001), and these should be considered to ensure that a person-centred approach that includes the key aspects of the recovery approach as well as the provisions of the MCA is maintained.

Conclusion

The recovery approach has some difficulties when applied to people with dementia, but it is an essential aspect of the

care process. While there may be important considerations around declining abilities and cognitive and insight problems this must not be used as an excuse to override the autonomy of the individual or adopt a non-consultative, paternalistic approach. The MCA has addressed some of these areas so that people’s ability to make their own decisions is protected as long as possible; however, it is only realistic to acknowledge that there will come a point when the person is not able to make their own decisions and participation in a recovery approach will become increas- ingly difficult. At this point decisions in the person’s best interest will have to be made, but consultation with either a nominated advocate or a person who has the best interests of the patient is a priority and must take place. There must also be recognition of any advanced directive to ensure that the person’s wishes are carried out. It is early days, and the impact of the Act will need to be assessed over time but ensuring that nursing practice is not allowed to ignore these changes and working within the spirit of the recovery approach will best serve to make this happen.

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