EVIDEM-MCA: implementing the Mental Capacity Act 2005

Steve Iliffe; Jane Wilcock; Vari Drennan; Claire Goodman; Mark Griffin; Martin Knapp; David Lowery; Jill Manthorpe; Greta Rait; James Warner

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Iliffe S, Wilcock J, Drennan V, et al. Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM). Southampton (UK): NIHR Journals Library; 2015 Apr. (Programme Grants for Applied Research, No. 3.3.)

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Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM).

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Chapter 5EVIDEM-MCA: implementing the Mental Capacity Act 2005

Abstract

The MCA 2005¹⁷ safeguards the rights of people with dementia and carers, enshrining principles of capacity, decision-making and best interests. Our study, designed in four phases (pre diagnosis, immediately after diagnosis, living with dementia, end of life), explored the MCA’s implementation and impact.

We interviewed practitioners from agencies working with people with dementia (n = 272), ‘well’ older people about approaches to long-term planning (n = 37), OPWD (n = 16) and carers (n = 15) about views and experiences of using the MCA to make plans and everyday decisions, and many of these were followed up 9–12 months later. Framework methods were used to analyse and categorise themes.

Baseline interviews indicated limited awareness, knowledge and understanding of the MCA but by follow-up these had grown. The need for training to be a continuous process informed by supervision, rather than one-off events was identified. An ‘information merry-go-round’ for people seeking advice and information was found. Some ‘well’ older people had made financial plans but appeared reluctant to think about HSC preferences and choices. Principles of the MCA, such as ‘best interests’ decision-making, were useful for carers to apply when deciding for their relatives. Few professionals are aware of offences under the MCA and lack confidence in distinguishing criminal acts (ill treatment and wilful neglect) from poor care.

Practitioners working with people with dementia may be uniquely placed to address decision-making and longer-term planning. Specific information and advice can empower people with dementia and carers and minimise risks of abuse and neglect. Implementation of major legal changes, such as the MCA, needs to be managed in all settings and needs long-term commitment.

Introduction

This study investigated one of the major changes affecting day-to-day practice in dementia care in England, a change that also fundamentally enhanced the rights of people with dementia and their carers. The MCA 2005¹⁷ in England and Wales, implemented in 2007, enshrines much of the practice already established under case law.²⁴⁸^,²⁴⁹ It safeguards people who lack ability to make specific decisions, enhances personal autonomy and enables people to make advance decisions about their care and finances and to refuse treatment. It introduced new proxy decision-making roles to address health, welfare and financial matters, and specialist advocacy when major health and welfare decisions are being considered for people who do not have family or friends. The implications of the MCA for HSC practitioners were initially unclear.²⁵⁰^,²⁵¹

It had been estimated that over two million people in England and Wales were likely to be personally affected by the provisions of the new MCA.²⁵² These were expected to include many people with dementia and their carers, their representatives or service providers.²⁵³ The MCA now provides a statutory framework to empower and protect people, notably those who fear cognitive impairment, those who have newly received a diagnosis of dementia, or those who have advancing symptoms who may not be able to make specific decisions at specific times (www.dca.gov.uk).²⁵⁴ It clarifies who can make decisions, in which situations, and the steps that should be taken when considering these decisions (see Mental Health Foundation, 2012 for a review on the topic).²⁵⁵ It also enables people to plan ahead in the event of loss of their capacity to make particular decisions.²⁵⁶

The ability to make choices about future care and treatment decisions led to predictions that the MCA would have great potential to enhance practice and thus contribute to better outcomes for people with dementia and their carers.²⁵⁷ People with dementia may require specialist advice sensitive to their particular values and circumstances to formulate and communicate their wishes and preferences about care and treatment. However, there are likely to be key transitions or times when advice and assistance may be most pertinent.²⁵⁸ These include professional encounters, such as the communication of a diagnosis of dementia, transitional periods when planning and setting up care packages, or when facing the end of life. It was predicted that professionals would need to devote time to assisting people with dementia and their carers to benefit from the MCA, and to make sure that they were ready to explain and debate its implications within teams and across agencies.²⁵⁹ Although savings of professional time were envisaged, there were concerns that practitioners might feel compromised by work pressures or be unable to provide the necessary expertise and support.²⁶⁰ Furthermore, proactive promotion of the MCA by service managers and professionals may be required if people with dementia are able to maximise their opportunities for planning their care and making their wishes known.

Essentially, the MCA offered people with dementia a crucial opportunity to influence professional decision-making. It confirmed that professionals should presume capacity to make decisions unless proven otherwise and that best interests should be the basis for action if a person is not able to make a specific decision. It has the potential to enhance the confidence of people with dementia and their carers that they are able to shape their current and future care and treatment. Lastly, the new criminal offences of ill treatment and wilful neglect defined by the MCA were designed to strengthen adult protection systems, to the benefit of people with dementia and others who may have particular difficulty in reporting abuse and providing evidence. The full implementation of the MCA in late 2007 provided a unique opportunity to explore the early, then ongoing implementation and impact of the MCA with a focus on its incorporation into practice and service cultures.

Methods

Aims and objectives

Two overarching aims of the study informed the initial study design (see Appendix 62 for the study protocol). These aims were to:

identify the implementation issues arising from the introduction of the MCA in the services working with people with dementia and their carers over a 5-year period, in community settings (including care homes)
explore and make recommendations about continued professional development programmes about the MCA, and their links to adult safeguarding training and practice.

Study design

The study was designed as four phases to reflect the trajectory of the dementia syndrome: (1) pre diagnosis; (2) post diagnosis; (3) living with dementia after diagnosis; and (4) towards the end of life. Distinct research questions were developed for each phase, incorporating the overarching aims of the study. Participants for each phase were recruited accordingly. The phases, research questions and participants are summarised in Table 68 and details can be found in Appendix 63.

TABLE 68

Phase classification of research questions and participant groups

To capture the element of change over time in the implementation of the MCA, we incorporated a longitudinal element in our study by interviewing most practitioners at two time points: time 1 and time 2 (and some groups at time 3). As our intention was to investigate how the MCA was becoming embedded in practice settings, the study was designed in order to elicit practitioners’ own experiences over time as a way of capturing changes in their understanding and experiences.

Settings

Participants were interviewed at their convenience. For the majority of practitioners, interviews took place in work hours in a private office or staff room at their place of work, although a small minority opted for telephone interviews. ‘Well’ older people, people with dementia and their carers all preferred interviews to be conducted in their own homes. Three participants offered to be interviewed in the researchers’ office, as they were in the area and their offices were unsuitable (e.g. open plan).

Inclusion and exclusion criteria

No exclusion criteria applied to staff interviews as we sought responses from staff in each service, at all grades and undertaking a range of work with people with dementia. Because of time constraints and work pressures, some staff declined the opportunity to participate. As participation was voluntary, no further invitations were extended.

Inclusion criteria for interviews with ‘well’ older people were that participants had to be aged > 50 years (to explore how people possibly plan ahead as they approach later life) and the ability to participate in an interview in English. No other exclusion criteria were applied.

For interviews with dyads of people with dementia and their carers, the inclusion criteria were the presence of a formal diagnosis of dementia, and the presence of a carer whom they either lived with or saw for more than half the week. An ability to speak English was also necessary. No other exclusion criteria were applied.

Sources

In order to access the wide range of participants needed, different community-based groups were asked to publicise this study as a recruitment strategy. These included advocacy groups, social clubs and social groups, lunch clubs, support groups, Carers’ Centres, Alzheimer’s Society groups, Age Concern (now Age UK), Greater London Forum for Older People, University of the Third Age, local authority (LA) social services/adult services departments, and a selection of care homes in the private and not-for-profit sectors. We were keen to access as diverse a range of participants as possible, and hence recruited from different areas in and around London along with agencies that worked with diverse client groups. As Robson¹²⁵ suggests, we adopted flexibility in our sampling framework, for instance, although we started with a quota sampling frame, that is, aiming to speak to people with varying job roles and experiences, we also adopted a ‘snowballing’ approach – the practice of asking interview participants for suggestions of other potential participants.

Recruitment and sampling strategy

For all phases of the study, a quota sampling strategy¹²⁵ was designed to recruit participants who would be willing to share their views with the research team. An invitation letter and details of the study were provided for those who expressed interest. In some cases, contact was initiated by a presentation by a member of the research team on a related topic, at the end of which recruitment was discussed and participants were invited to participate. This proved an effective way to make contact, as it engaged the group or agency from the start and fostered a relationship based on mutual trust. Once permission from senior management had been obtained, invitation letters were cascaded to all staff via e-mails or in hard copy. Voluntary participation, confidentiality and anonymity of responses were emphasised. As noted above, ‘snowballing’ was a further means to recruitment.

Data collection

All who expressed interest were approached, the study was described to them, implications of taking part were explained, assurances of confidentiality were made and consent was obtained. For the analytical method chosen (see Analytic methods, below), SSIs within a structured format are considered most appropriate. For this reason, structured questioning was seen as too restrictive for participants to talk in detail about individual experiences, and open-ended questioning was seen as too broad and reflexive, which could have diluted the focus of this study. SSIs were conducted using topic guides developed in light of the study aims and emerging knowledge about the MCA in practice. Most interviews lasted 30–45 minutes.

To achieve maximum consistency, a similar methodology was applied to interviews with ‘well’ older people, people with dementia and carers. However, the researcher (KS) conducting the interviews adopted a more exploratory approach to the interview when talking with people with dementia and probed where relevant. Her experience in other phenomenological research studies was helpful in engagement and conducting interviews on sensitive subjects.

For the subsample of Alzheimer’s Society staff, the Society had chosen an electronic survey as being the most efficient way to collect information from busy staff, and questions were developed accordingly. This contained as many questions from other interview topic guides as relevant and feasible.

In view of the potential sensitivity and personal nature of the interviews, participants were reassured that their anonymity would be maintained and, therefore, all identifying personal details have been changed or replaced with ellipses and ‘their’ has been used to replace his/her. Participants who requested information about the MCA following the interview were provided with sources of information and specific material that was relevant to their role or interest. Following some interviews, the research team provided training on the MCA to care home staff or information to older people’s groups.

Interview topic guides

Tailored, semi-structured topic guides were developed to explore the research questions at each phase. Topic guides were piloted and discussed with members of the study advisory group. For practitioners this was tailored to activities of the specific agency or professional group being interviewed. The topics covered included:

Training The model and effectiveness of training received (if any), the nature of the training, the effectiveness of training in developing expertise and confidence.
Roles and activities Any impact of the MCA on specific roles and activities, matters raised by people with dementia and/or carers.
Looking ahead Predictions about use and uptake of the MCA and its impact.
Personal perspectives Any documents that participants had drawn up for themselves or others, exploring the reasons why/why not.

A longitudinal element was captured in two ways. First, participants were asked to reflect on changes in their practice, and how these may have affected their knowledge and experiences when using and abiding by the MCA. Second, questions were specifically framed to ask participants to describe ‘new’ or ‘recent’ procedures, frameworks, structures and processes encountered following the first interview. Although time 1 and time 2 interviews were not always directly compared, an understanding of findings from time 1 interviews informed the development of the time 2 topic guide, thus further capturing the longitudinal element of this study.

The topic guides for ‘well’ older people in Phase 1, and people with dementia and carers in Phases 2 and 3, incorporated questions around planning (financial, HSC – referred to as ‘welfare’ in the MCA), everyday decision-making, proxy decision-making and sources of support they would consider or had used, or were unknown or unavailable. Appendix 64 includes all topic guides used in the study.

Sample size

Because we used a qualitative methodology, no sample size was determined in advance. Instead, members of staff in participating organisations were approached and the importance of the study explained to them. For qualitative interviews with ‘well’ older people, recruiting and data collection ceased when thematic saturation was achieved, that is, when no new themes appeared to be emerging from the data. The same principles of thematic saturation were followed for interviews with dyads of people with dementia and carers. For this group we anticipated recruiting 12 dyads, allowing for around two dyads to drop out over the course of the longitudinal element of the study.

Analytic methods

All interviews were digitally recorded and transcribed verbatim by an experienced transcriber. All transcripts were checked for clarity, verified by the interviewer for consistencies and subjected to framework analysis.²⁶¹^,²⁶² Framework analysis is appropriate for this type of evidence-based practice study, as it enables the delineation of themes in relation to prespecified research questions. This enables a priori questions to be answered through the use of qualitative research and is particularly useful in HSC services research.²⁶² More details of the five main stages in framework analysis can be found in Appendix 65.

Ethical permissions

Ethical requirements were maintained across all phases. Appropriate permissions from senior managers were obtained for interviews with their staff. Local government bodies’ requirements for research governance approvals were met. All participants were approached through staff e-mails or written invitations but voluntary participation was emphasised and confidentiality was assured. We were keen to assure participants that the interview was not a test of them or their service, but simply an exploration of their views.

All data collected were stored in password-protected computers, accessible to only the research team. When reporting findings, any identifying data were removed and only the interviewer who collected the data was able to identify a participant. For interviews with ‘well’ older people, ethical approval was obtained from King’s College London REC (REP(GGS)/08/09–29). For interviews with dyads of people with dementia and carers, ethical approval was obtained from the Social Care REC (09/IEC08/17). For the survey of Alzheimer’s Society staff, relevant data sharing agreements were exchanged and signed.

Results

In order to obtain a multidimensional perspective on the implementation of the MCA, the study data were analysed as a complete data set. Principles of framework analysis enabled the identification of themes in relation to questions from the interview topic guides. Significant cross-cutting themes were delineated from transcripts rather than from each phase. Although the phases helped with designing the study and data collection, we judged this would be a more holistic means of presenting the findings, understanding the data and addressing the overall aims of the study.

Sample characteristics

Overall, semi-structured interviews conducted included: 272 interviews with practitioners over all time points; 37 interviews with ‘well’ older people; 16 interviews with people with dementia; and 15 interviews with carers of people with dementia. We further conducted analyses of 84 responses to a survey of carers undertaken by the EVIDEM-ED team and of 86 survey responses by staff working for the Alzheimer’s Society. See Table 69 for description of the interviews.

TABLE 69

Participant interviews along the phases of EVIDEM-MCA

Detailed breakdowns of sample characteristics are presented in each of the published papers. In summary, these comprised 10 staff from Age Concern (now Age UK) groups;²⁵⁸ 15 staff from Carers’ Centres and other voluntary associations and nine staff from Alzheimer’s Society branches;²⁶³ 13 Safeguarding Adult Coordinators (SACs) at time 1,²⁶⁴ 12 at time 2;²⁶⁵ and 15 at time 3;²⁶⁶^,²⁶⁷ 28 care home managers and senior care staff and 15 care workers in care homes at time 1;²⁶⁸ and 28 care home staff at time 2 (in preparation); 15 specialist dementia community nurses (Admiral Nurses) at time 1;²⁶⁹ and 15 again at time 2;²⁷⁰ 10 social services’ staff at time 1 (in preparation). We also analysed the views of 86 Alzheimer’s Society staff who contributed to a survey about responding to financial abuse of people with dementia and carers.²⁷¹

Additionally, 37 ‘well’ older people were interviewed for Phase 1;²⁷² a survey captured responses from 84 carers for Phase 2; and 15 dyads were interviewed comprising a person with dementia and their carer for Phases 2 and 3.

Thematic findings: overall

A number of themes were derived from transcripts. For the purposes of this report, overarching themes are presented (for an overview see Table 70) and between-group differences are highlighted. Detailed findings are reported in the study’s publications. Please refer to Appendix 66 for a narrative description of each theme.

TABLE 70

Overall thematic findings from all transcripts

Universal appeal of the Mental Capacity Act

One of the most important themes to emerge from the study was the wide appeal of the values and principles of the MCA to practitioners working in HSC services, to ‘well’ older people, and to people with dementia and carers. Most of those who knew about it or had experience of using it were strongly positive about the MCA. This wide appeal contained the following three subthemes.

1. Beneficial to range of health, social care and voluntary sector practitioners.

2. Dignity and rights protected of people with dementia and carers.

The second of these two subthemes was illustrated in one of our early interviews with a participant working for a local Age UK group (see below). Although Age UK is not a specialist dementia-focused organisation, its branches and national organisation play a substantial part in advice-giving to older people. This illustrates the value of taking a broad system perspective to dementia care and support. It also highlighted the dimension to the MCA of enhancing the rights of people with dementia rather than seeing it as a professional burden.

I think it would be that it maybe just allowed people to have more rights, be supported in terms of making their decisions, and so I think that is the key thing, and that people are able to retain rights more than they have been able to, and I think the Act is around the best interest of the individual more and something about it being less restrictive in terms of the intervention on behalf of people, so I think it is really about broadening people’s rights.
Age Concern (now Age UK) staff member, CO 02

3. Awareness not widespread but growing.

This third subtheme is illustrated by a short extract from a specialist community nurse working with people with dementia (an Admiral Nurse). This practitioner had yet to call on specialist support but, in practice, her decision-making appeared to rest comfortably on principles of thinking about decisions on the basis of what was in the person’s best interests.

I think the only way really that it has been useful in terms of practising is that it’s at the back of my mind now. When I come into contact with people and decisions have to be made, I am thinking ‘is that something that is in that person’s best interests or is this case where somebody else should be called in?’ So I am more aware but in actual fact there hasn’t been any actual incident where I felt that I have actually put it into practice.
Admiral Nurse 03

Training

We systematically asked all practitioner groups about the training they had received in order to explore the sources of their understanding and knowledge. The frequency and format of training and the challenge of translating training into practice were two subthemes that emerged. The first exposed professionals’ variable introductions to the MCA and ways in which didactic training was not always seen as useful. Those who had missed initial training were not often offered opportunities to remedy this. In services with very high turnover this is a particular problem, as there is little opportunity for peer education. Some participants spoke of the problem of translating training into practice and we found few reports of the MCA being used in supervision. Staff within local authorities with responsibilities for safeguarding, and for the MCA Deprivation of Liberty Safeguards, emerged as valued sources of local knowledge and support.

Implementation

At the level of implementation, most practitioner groups found the MCA easy to apply in everyday practice. Principles of the MCA were universally accepted, and seen as reflecting the values of the Human Rights Act.²⁷³ Most practitioners felt that the MCA generally clarified their thinking around matters such as capacity and making best-interests decisions. Recording decision-making processes was proving relatively straightforward. The following four subthemes emerged.

Quick and easy incorporation into safeguarding practices and procedures

There was strong evidence from interviews that the MCA had made a difference to the safeguarding of people with dementia from abuse and neglect. Prior to the MCA this had been seen as difficult as intervention powers were unclear and individuals’ refusal of support seemed hard to override. Those working in safeguarding services were unanimous that people with dementia were better safeguarded, as the extract below from one interview shows.

I think it gives a framework for evidence decision-making on behalf of someone. I think it also gives us a framework to discuss with families their responsibilities under the MCA framework. It gives people who don’t have capacity a level of protection – capacity has to be made in a particular systematic way and it gives us protection as to why that decision has been made in their best interests.
Safeguarding Adult Coordinator 04

Confidence and expertise

We asked all practitioners to report on their own levels of confidence and expertise in the MCA. Our analysis is reported by professional group. Generally, those working in adult safeguarding scored highest, whereas care home staff were less confident but recognised their own limited expertise, as the quotation below illustrates. This finding has major implications for the wider system of support for people with dementia as lack of familiarity with legal powers and safeguards in one setting may mean that communication between different practitioners is not based on similar understandings. For example, we found that advance statements in a care home might be known to a manager but not other staff and the decision-making authority of a person who had been granted LPA might not be understood by care home staff. These findings chime with some of the findings of EVIDEM-EoL.

My knowledge on a standard basis would be around 2 (out of a possible 5), but if I were to do research for my clients then I would delve into it and on that specific issue, then I would be confident in getting the information. We just offer general advice and up to a level of 2 I would know general advice, and we could research if we don’t know, that is more than adequate [for] my post.
Care home worker 01

Risk of information ‘merry-go-round’

Taking a system-wide approach, this study also found that people with dementia and their carers remain poorly served by some agencies and professionals. The advice and information they seek may not be easily accessible and they run the risk of being passed from agency to agency. Advice to find information online seems particularly inappropriate for many people with dementia: ‘Frustration that people are referred to numerous sources of information which are not able to give them advice or address their specific concerns’.

Mental Capacity Act expertise at all levels is unlikely, but central expertise is required

We noted above that local sources of expertise were emerging but did not always have explicit roles in being the main source of local knowledge. Our linked study, which audited MCA knowledge and practice in an acute hospital,²⁷⁴ also observed the limits of MCA expertise within the hospital and in its own policies and procedures. We do not suspect that this hospital is unique.

Everyday decision-making

The MCA contains principles that support everyday decision-making. However, there was limited evidence of their formal application and operation with respect to people with dementia living in their own homes and their carers. Our interviews with these individuals revealed a number of subthemes that throw light on how decisions are made within such close relationships: negotiated decisions, past preferences, weighing best interests and inequities in access to knowledge. This area had not been investigated previously. Our interviews were with people with early dementia and these themes may not necessarily apply to people whose symptoms are more severe. Four subthemes were identified, the first three of which are illustrated by a quotation from a participant.

Everyday negotiation

I like retirement. I like being at home. We [wife and myself] have breakfast together and decide what we’re going to do all day. Mostly we’re together but if she has one of her Ramblers’ outings, I don’t stop her. I’m not that kind of husband! But mostly we do things together.
Man with dementia

Past preferences being key to making proxy decisions

Oh I don’t ask her what she wants any more. I know what she’ll say anyway – ‘anything you like, you decide’. So I just do what’s best for us both. She has never had sugar in her tea. Never! And lately, she seems to like it! So I let her be, let her have it if that’s what makes her happy. When the sugar runs out, I’ll get some more but I’m not going to break my back getting the sugar for her because she’s never had it before, you know?
Spouse carer of woman with dementia

Weighing best interest decisions

I need to make sure that my health does not suffer. I know I should be doing anything that’s good for him, and I would. But I get so tired these days and I worry . . . if I go what will happen to him? So sometimes I need to force myself to rest . . . for his benefit, if you see what I mean?
Spouse carer of man with dementia

Inequalities in access to information

This subtheme arose in these interviews as well as in those with professional participants. In particular, there appear to be inequalities of access to information among those who do not have close family members or friends, and those who are not familiar with making financial plans and arrangements. Such people may never have consulted a solicitor and may regard themselves as being able to rely on continuity of care – for example, presuming that they will be able to retain their ‘family’ GP if they move to a care home.

Long-term planning

We asked a diverse group of people with dementia, their carers and ‘well’ older people to discuss their thoughts about long-term care needs and planning. They described personal perspectives and circumstances, talked of different types of plans, and some acknowledged not knowing where to turn. Three main subthemes were identified which are illustrated in the quotations below:

Planning influenced by personal perspectives and circumstances

I live for today, tomorrow you die. It has been successful for me so far, I am 79 . . . I enjoy good health and I go away every year and everything.
OA 021, male, age 79 years, black Caribbean

I don’t care if I am dying tomorrow, I said to people ‘look, if it is my turn that God said I should come and join Him’, I said ‘I am prepared, what is the use of worrying?’
OA 035, female, age 65 years, black Caribbean

What the Government have to realise is as I get older my friends get older, so at the moment I am waiting to find out if one friend is going to be buried, another friend has Alzheimer’s and so it goes on and on and on and on, no way can I ask a friend my age. Younger friends lead very busy lives and they have got family problems of their own.
OA 012, female, age 84 years, white British

Financial and funeral plans common, less so health and social care plans

Participant:
I am hoping that I won’t be looked after [in a care home], but yes I will wait until I cross that bridge, I think.
Interviewer:
Is there a reason you have avoided thinking about it now?
Participant:
No, I have not thought about it, perhaps I need to think about it, I was just interested in getting the money sorted, but you are right, I do need to think about it, haven’t heard about it before. (OA 016, female, age 59, British Indian)
Participant:
Hopefully I will probably die [in own home] because I don’t want to go into a home, unless I have to, or into an old people’s bed-sit with a warden.
Interviewer:
Have you made any written formal plans to ensure this?
Participant:
No, I think that automatically would happen with the council.
Interviewer:
Have you made any provisions to prevent being moved into a home?
Participant:
No, I don’t know how I can.
OA 023, female, age 68 years, white British

Limited support with knowing where to turn

No (not sure where to seek help around care), I have a financial adviser so he keeps up to date with everything, and, you know, he is very good – like certain policies that I used to have that he felt that I should cash them in, you know, because I have become ill, he said it is no use carrying on with them, so he has advised me to keep a certain life[style], car, and things like that – but certain policies I was paying in monthly and that and he said it is not worth it at the moment so that is very good.
OA 037, female, age 53 years, British Indian

If I made plans in the future, well I could think of an event immediately that would save me the trouble, if my doctor tells me I have only six months to live, something like that. But I think if a doctor told me that I had dementia, then yes, I would be making plans in that case, but I cannot think of anything else which would precipitate that. Well it is all I can think of at the moment, there may well be others you know, or if I have a sudden debilitating illness I suppose, like muscular dystrophy.
OA 010, male, age 70 years, white British

Safeguarding

As noted above, a significant element of the MCA is the safeguards it provides for vulnerable people such as those with dementia. Almost all practitioners noted this in their accounts of everyday practice. Alongside this central tenet, three subthemes emerged, which are illustrated in the quotations below:

Inherent safeguarding ethos

I think it has shifted the relationship between the people who receive services and those who provide services if it’s being implemented properly. And it can be challenged in law. It keeps us in our place. We provide support and expertise but in the end it’s their decision. And in our care management procedures it’s about positive risk taking. Life is about risk and adventure. When I first came into safeguarding it was about protection. If they are being empowered and feeling in control the chances of them being victimised are less.
Safeguarding Adult Coordinator 08

Need for help with financial management and safeguarding

Financial abuse is one of the second biggest abuse (types) that occurs in (area), it’s the second biggest of our alerts. There are a substantial amount of people with memory impairment which leads people to believe that they can get away with it.
Safeguarding Adult Coordinator 07

Warning signs of financial abuse should be publicised

We’ve done one (referral to the Police concerning a person who had gained) Power of Attorney. He befriended a couple when they had capacity. The husband died and the wife gave him Power of Attorney. He moved into the property and he moved her into a small room. The (person granted) Power of Attorney was not willing to spend money on her – for nightdresses and things when these were asked for. We’ve gone to the Court – the Office of Public Guardian has asked for bank statements. We’ve moved the lady to a place of safety; he doesn’t know where she is, while investigations are going on.
Safeguarding Adult Coordinator 019

Role of banks and community support networks in risk reduction

Many of those who had encountered people with dementia (whom they thought were at risk of financial abuse) thought that more could be done to reduce these risks if banks and other financial bodies were more engaged with safeguarding services so that that they could draw attention to emerging concerns about a customer’s vulnerability. Our investigation of this subject was extended by a partnership with the national Alzheimer’s Society in which we offered support in the devolvement of their national staff survey and shared data from our interviews with Adult Safeguarding Coordinators. This partnership established the extent of carers’ concerns about financial exploitation of their relative with dementia and, for the first time, highlighted the growing risks of internet and telephone scams.

Discussion

Strengths of the study

There are two main strengths of this study: (1) the range of practitioner groups that shared their views of understanding and using the MCA in their work and permitted us to see this from a systems perspective and (2) the longitudinal nature of the study that enabled us to explore change in perceptions among the same groups of practitioners, their successors, and among people with dementia and their carers. Together, these contributed to a form of triangulation of data that provided us with a holistic perspective on how the MCA is being implemented and incorporated into practice and everyday decision-making. We gained insight into a breadth of experience, as well as depth over time. Our familiarity with the emerging literature on the MCA led to an invitation to produce an integrative review of the MCA evidence for dementia practitioners.²⁷⁵^,²⁷⁶

An additional strength of this study is its predominant use of qualitative methods, which gave participants the opportunity to discuss their experiences in greater depth than might have been possible from any other method, such as a survey. Qualitative interviews further enabled us to probe appropriately according to the responses given. We also drew on survey methodology when we wanted to obtain a greater number of responses and a broader (rather than deeper) perspective, as in the survey of Alzheimer’s Society practitioners’ views of managing money, and by conducting secondary analysis of the EVIDEM-ED survey of carers’ satisfaction with legal and financial advice, planning and referrals. We drew on national and local media for examples of criminal prosecutions under the MCA (as these are not collected nationally). We also mined our research unit’s unique collection of Serious Case Reviews to investigate their coverage of MCA practice.

Methodologically, the rigour or trustworthiness of the study can be established by three criteria: credibility or validity of study findings, confirmability or dependability of study findings, and transferability or generalisability of the interpretations:

Credibility or validity was sought through obtaining a wide range of perspective, over time, on the issue, ensuring that a broad holistic view of the research question was obtained in our data. A commitment to iterative collection and analysis also supported this.
Confirmability or dependability of interpretations was established through clear description of analytical methods, peer analysis of data, rigorous paper trails and reflexive thinking on the parts of the researchers.
Generalisability or transferability to other settings was sought through detailed discussion with research peers, through the multidisciplinary advisory groups of the MCA study and the research programme as a whole, who offered insights in the transferable elements of our study in various settings.

Limitations of the study

Our study is limited in that participants were not always the same between time 1 and time 2 due to staff changes and differences in availability. We were unable to observe practice and everyday decision-making and relied on participants’ accounts. Our interviews with people with dementia and their carers were undertaken with a group in which dementia symptoms were not severe. Planning and decision-making may change as severity and disability increase.

Interpretation of the study findings in light of previous research

Interviews conducted during time 1 revealed interesting trends related to early implementation and expectations of using the MCA. The value of the MCA in supporting carers was a development first identified in this study during early interviews with Alzheimer’s Society staff.²⁶³ These staff reported that the framework of the MCA was very useful to carers, particularly around long-term care planning and the ‘best interests’ principle. Challenges in proxy decision-making have been recorded²⁷⁷ and, based on this understanding, we investigated how proxy decision-making by carers was developing and changing over time. Although a person with dementia and their carer may require separate advice,²⁷⁸ we found that many of our dyads presented themselves as a unit and talked of the importance of getting advice together so they could discuss the implications with each other ‘there and then’. We found that, if approached sensitively, some dyads welcomed the opportunity to discuss long-term care planning. However, some did not and in many cases, it falls to a skilful practitioner to gauge individuals’ needs and wishes. We also have drawn attention to the potential to think about advance planning and arrangements among people who do not have family or friends who are willing and able to take on such roles.

Safeguarding Adult Coordinators appeared to find the MCA easy to incorporate into their systems of work.²⁶⁴ Most were well informed about it and acted as sources of expertise locally. Prior to the MCA, many SACs considered there had been a legal vacuum around decision-making.²⁷⁹ We cautioned at time 1 if this concentration on MCA work could mean that safeguarding work was in danger of being sidelined, further contributing to demands on SACs’ time and resources. By time 2, most SACs continued to be well informed and had greater experience in using the MCA.²⁶⁵

There is a need, however, for continuous training to be sustained over time, given the high rate of staff turnover in social care settings,²⁸⁰ and even among SACs as our participant groups showed. The extensive investment by the DH in developing training and publicity at the time the MCA was implemented in 2007²⁸¹ will not be repeated. Having the confidence to use and refer to the MCA also grew, alongside knowledge and experience with using the MCA, but it is unclear how case law and other developments are being fed into practice. At the time of writing (April 2014) Parliament has been debating the new Care Act 2014, as proposed by the White Paper Caring for our Future: Reforming Care and Support,²⁸² and the experiences of the MCA implementation have lessons for how new law can be incorporated into professional transfer training. We have discussed these lessons with stakeholders in Ireland where a new Mental Capacity Bill, similar to the MCA, is shortly to be published and with dementia researchers and gerontologists in Australia, including policy-makers in the state of South Australia.

Our study also highlighted how voluntary sector organisations often served as valuable sources of support and advice to people living in the community but their knowledge varied. Staff from Age Concern (now Age UK) and carers’ organisations were not always specifically trained about the MCA, and tended to rely on signposting to other organisations that they felt would be more knowledgeable about legal matters.²⁵⁸ Signposting is an important part of any local information strategy and the need for it may be greatest among people lacking confidence, having mixed experiences with ‘officialdom’ and those who are on their own in later life. Age UK at the local level was a major resource for some older people who were keen to discuss and consider long-term care planning.²⁷² However, our interviews with ‘well’ older people revealed that attitudes to planning could also be based on personal inclinations and long-term habits, as well as preferences. Approaching GPs or primary care services was not generally considered appropriate unless there were health concerns. Professionals working with people with dementia and their carers may need to offer time and a listening ear in order to support people who are feeling that matters are slipping out of their control at many levels.

By time 2, community nurses’ and adult safeguarding staff’s understanding of the MCA was generally more sophisticated. However, specifics of the MCA remained blurred among some and memories of training were dim. Some community nurses, initially themselves often lacking confidence, expressed concern about a lack of understanding of the MCA among other professionals.²⁷⁰ One exception to this was that many participants at time 2 were aware of the importance of financial planning and that they could promote understanding of this among their clients or service users.²⁶⁵^–²⁶⁷ This confidence was obvious about end-of-life care planning, except among care home managers who described undertaking such discussion with residents on moving into the home, but largely without reference to the MCA.

This study has highlighted that many professionals have experience of family members with dementia, an observation that has not previously been evidenced. At a personal level, some reported finding family decision-making and planning potentially easier under the MCA, but loss of decision-making capacity or family disputes were sources of tension. We note the value of building upon the personal experience of practitioners to promote empathy with family carers in the provision of timely information and advice.²⁶³^,²⁶⁸ There have been surprisingly few investigations of the overlap of professional and personal experiences of dementia caring and so this study has added to the literature.

The offences of ill treatment and neglect created by the MCA were poorly understood and their implications have not been reported widely in professional or research-based literature.³⁹ Understanding among practitioner groups was minimal, as reported in our papers.²⁶⁹^,²⁷⁰ Accounts given appeared to be based on ‘common sense’ rather than legal definitions and thus potentially erroneously downgrading the offence of ill treatment and wilful neglect as poor practice. We therefore investigated this subject more thoroughly through the use of a consensus group. This group recognised the importance of highlighting that poor practice could be addressed by legal sanctions but were unsure how to access emerging case law and to promote learning from it. In conjunction with our understanding that some MCA training has been reported to be didactic and piecemeal, or needs to better reflect practice dilemmas and uncertainties, we have developed resources on this facet of the MCA reflecting the findings of our interviews. These include overviews for dementia practitioners²⁸³ and for the care home sector.²⁸⁴

Conclusions and implications

There are three main lessons to be drawn from this study. For HSC practitioners it is evident that this legislation met a need in practice and that the legislation has largely been easy to work with, that professional values are in accordance with the values and principles of the MCA, and that it has promoted interdisciplinary and interagency working. This is possibly a result of the consensus that shaped the legislation: the involvement of practitioners in the implementation of the MCA and the devising of its Code of Practice. Engagement with practitioners and with stakeholders from patient/user and carer groups may be a valuable consideration for other change processes.

Second, this study has gleaned information about training transfer, the process by which professionals and non-qualified staff (the majority of practitioners working in dementia care) are provided with training while in post and change their practice. One advantage of a longitudinal study is that we were able to discuss training at various intervals, to talk to practitioners about what seemed to work well and whether or not they were able to refresh their knowledge and skills. We found that training was not always welcome or seen as relevant if it was didactic in nature, that there seem to be gaps among hospital-based staff in particular, and that few employers are explicitly checking that their new staff are familiar with the MCA. There was surprisingly little use of the MCA in supervision among professionals. Many practitioners were reliant on local expertise but this ran the risks of overloading certain sources. In light of the high levels of concern about financial abuse of people with dementia expressed by many participants, there may be scope to highlight this among all practitioners – especially to alert them to the targeting of people with dementia by strangers and by electronic or telephone contacts.

The third lesson lies in the potential inequalities of information. Providing information online may be acceptable to professionals but it is not welcomed by many older people or carers. Those with knowledgeable family members or those who have legal advisers are better off in this regard. Information was also not always shared among services, with one particular gap in social care – where some care home staff are not familiar with the implications of the MCA and the legal documents that their residents may have drawn up but which the residents are no longer able to bring to staff’s attention. The key professional here is the person’s GP but the sharing of MCA details with the GP and consequent passing to new care providers was not commonly encountered. We further noted the potential of an ‘information merry-go-round’ locally, as not all voluntary sector staff offering information and advice were confident in their knowledge of the MCA and potentially re-referred people making enquiries. A similar lack of expertise and confidence was also found among some professionals, such as some community nurses, who were otherwise likely to be seen as highly informed about dementia.

We do not suggest that everyone needs to have legal expertise in dementia services. The implication of this study is that it should be available and that information, advice and assistance are not the same. Commissioners may wish to ensure that these three areas are covered. Although memory services, for example, may give early information, some people with dementia and carers do not wish to take this up at the time of diagnosis but when these issues do arise they may not have contact with staff from a memory service. Advice to look ‘online’ may not be adequate or person centred.

Conclusion

This study broke new ground in investigating legislation that has fundamentally altered dementia practice and the experiences of many people with dementia and their carers. Although many people with dementia and carers will not encounter the MCA directly, it has great salience for them and its principles are widely supported by practitioners. Our research has outlined how new law is transferred to services and professionals. It has learned about changes in experience and confidence over time. It has focused on day-to-day decisions, as these are at the heart of human relationships. We are most grateful to all those who have allowed us to hear directly of their practice, plans, decisions and experiences.

Impacts

The research team has engaged with members of staff working with CNWL NHS Foundation Trust at events such as the annual summer schools across the study period, providing updates and workshops on aspects of the MCA (see Acknowledgements, EVIDEM-MCA publications and presentations). Discussions have been held with different professional groups and feedback provided to the Trust on MCA staff training.
A Dementia E-Learning Package (2012) was commissioned by King’s College School of Nursing and Midwifery and has subsequently been delivered to staff across the NHS South West. This educational package comprises the following modules: Introduction to Legal, Ethical and Cultural Issues in Dementia Care; Developing Competence in Social, Legal and Cultural Context; and Advanced Competence in Social, Legal and Ethical Context of Dementia. These are continuing professional development courses that a range of staff can undertake.
The research team was invited to undertake a literature review for the Joseph Rowntree Foundation on improving practice in communication with older people living in housing with care schemes, which made use of the EVIDEM-MCA study’s findings. This was published by the Joseph Rowntree Foundation²⁸⁵ and revised for a peer-reviewed publication.²⁸⁶
The research team worked with Dr Mareeni Raymond on the development of a toolbox for GPs on dementia for BMJ Quality during 2011 to 2012.
This study team provided assistance to staff of the Mental Health Foundation as members of its advisory groups on the Mental Capacity Advocates study and Proxy Decision-Making (INDIPS study). The study is represented on the Advisory Group of the NIHR School for Social Care Research (SSCR)-funded study of the MCA Deprivation of Liberty Safeguards.
Membership of the Dementia Action Alliance (DAA) was awarded to the Social Care Workforce Research Unit. The DAA is a national consortium of over 100 organisations committed to transforming the quality of life of people living with dementia in the UK and people who care for them. Our application drew attention to work on the EVIDEM programme and other studies. In our application we drew up an action plan to outline how we remain actively committed to involving people with dementia and carers in current and future research (www.dementiaaction.org.uk/info/2/action_plans/117/social_care_workforce_research_unit_kings_college_london).
The study contributed to the Alzheimer’s Society’s policy and communications work on safeguarding people with dementia from financial abuse²⁸⁷ (http://alzheimers.org.uk/site/scripts/documents_info.php?documentID = 1770). The research team provided expert review of three of the Society’s fact sheets on Financial Abuse and Making Decisions, which are available to members of the public.
The research team has informed student and professional development studies in several UK universities by discussing study proposals and details (e.g. at University of Bedfordshire).
The MCA lead at the DH has requested all outputs from this study and pre-publication copies have been sent to her.

Building on research capacity

Nested within the EVIDEM-MCA study was a further NIHR Service Delivery and Organisation-funded research study, ‘The transition from cognitive impairment to dementia: older people’s experiences’.²⁸⁸ This study complemented the EVIDEM-MCA study by providing the opportunity to investigate the dementia diagnosis transition from the perspective of people receiving this diagnosis and their carers. It highlighted the nuances of providing ‘information’ and the need to think about what information is wanted, understood and retained. The literature review confirmed the professional focus on care and treatment at the end of life (Advance Care Planning), and less so on day-to-day decision-making in dementia.²⁸⁹ Implications for commissioners and primary care teams were published in the British Journal of General Practice in 2013.²⁹⁰

A second study was also nested in the EVIDEM-MCA study. Although the EVIDEM-MCA study protocol explained that the focus on the research would be community based, the opportunity arose to work on the findings of an audit covering policy and practice about the MCA in one teaching hospital. This audit provided valuable insight into the implementation of the MCA in this setting, where reasonability appeared to have been diluted and procedural documents were incomplete and overlapping, and where training had been partial and not reflective of the needs of adult learners.²⁷⁴

Research capacity was further built by the involvement of new and junior staff in the study. This included assistance with interviewing, when senior staff mentored researchers who were new to dementia research, and help with study outputs (from Nigel Charles, now of University of Plymouth, and Jess Harris of King’s College London). The EVIDEM-MCA study has also provided illustrative case examples of approaches to research with care homes as published in the ENRICH Research in Care Homes resources (www.DeNDRoN.nihr.ac.uk/enrich/#.UEcmZcEiaHc).

Changes to protocol

The original protocol aimed to recruit a range of staff from HSC services. This included IMCAs and medical staff using the MCA. We subsequently learned that the DH and others had commissioned studies with IMCAs²⁹¹^,²⁹² and in the field of health care, with patients²⁹³ and with health-care practitioners.²⁵⁴^,²⁹⁴^,²⁹⁵ There was a clear evidence gap in the views, experiences and expectations of social care staff when using the MCA. Social care practitioners were also those who were most likely to come into contact with people with dementia and carers living in the community. Following guidance from our advisory group, we focused on this particular and diverse group of practitioners, as this was, and remains, the under-researched population and sector.

List of appendices

Appendix 62 Chapter 5: EVIDEM-MCA protocol.

Appendix 63 Chapter 5: Details of the four phases of study design.

Appendix 64 Chapter 5: Semi-structured interview schedules.

Appendix 65 Chapter 5: Five main stages in framework analysis.

Appendix 66 Chapter 5: Narrative account of findings.

Copyright © Queen’s Printer and Controller of HMSO 2015. This work was produced by Iliffe et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

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