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National Collaborating Centre for Mental Health (UK). Dementia: A NICE-SCIE Guideline on Supporting People With Dementia and Their Carers in Health and Social Care. Leicester (UK): British Psychological Society; 2007. (NICE Clinical Guidelines, No. 42.)

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Dementia: A NICE-SCIE Guideline on Supporting People With Dementia and Their Carers in Health and Social Care.

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9EDUCATION FOR PEOPLE WITH DEMENTIA, DEMENTIA CARE MAPPING, STAFF TRAINING AND INTERVENTIONS FOR CARERS OF PEOPLE WITH DEMENTIA

9.1. INTRODUCTION

This chapter is largely concerned with interventions that aim to educate, inform and shape understanding of dementia and care-giving practice. Although there are some pointers towards educational interventions for people with dementia, which might be seen as the beginning of a movement towards the person with dementia as ‘expert patient’, most of the research summarised relates to interventions for staff and family carers. This is undoubtedly related to the fact that it is only recently that the importance of the perspective of the person with dementia has been accorded due acknowledgement and recognition (Woods, 2001).

It has long been recognised that the attitudes, skills and knowledge of staff working with people with dementia have the potential to influence the person’s well-being, quality of life and function. Training is often seen as the means by which changes in quality of care can be pursued, and there are an increasing number of opportunities for staff in dementia care to attend training courses, external and in-house, and to achieve an accredited level of competence in care under the vocational qualification framework. For example, the National Minimum Standards from the Care Standards Act 2000 included the requirement that from 2005 at least 50 per cent of the work-force in care homes for older people should be qualified to National Vocational Qualification (NVQ) Level 2 in Health and Social Care (although it should be noted that there is no requirement for the NVQ to specifically address dementia care).

However, there is evidence in many fields that training per se is not sufficient and that other changes are also required, for example, in staff support, supervision and reward, as well as in the organisational culture in which staff operate (for example, Burgio & Burgio, 1990). Staff are instrumental in the delivery of many of the non-pharmacological interventions described in Chapters 6 and 7, and when training interventions are evaluated in relation to changes in the people with dementia who are the care recipients, there is a grey area where interventions might be viewed either as involving staff training or representing a particular type of non-pharmacological intervention. There is certainly no doubt that for non-pharmacological interventions to be successfully implemented in care homes, hospital units and day-care facilities, careful attention must be given to the relevant staff factors. Dementia care mapping, as part of an audit process involving feedback to staff and action planning, is one approach which holds promise as a means of driving forward improvements in quality of care. It was developed from the influential work of Kitwood (1997), in relation to person-centred care.

The contribution that family carers make to the support of people with dementia has also been widely acknowledged. Carers have moved from a position where they might be described as ‘forgotten sufferers’ or ‘hidden victims’ to one where there is universal recognition of how much the care of people with dementia depends upon them and of the potential costs involved in terms of increased risk of psychological distress (Donaldson et al., 1998), physical health problems and increased mortality (Schulz & Beach, 1999). This has led to extensive literature on factors associated with carer stress and a number of attempts to evaluate some of the wide range of interventions and services that have been developed in response. Some evaluation studies have examined outcomes for carers in isolation from the situation of the person with dementia; some have considered the ‘time taken to institutionalisation’ as the critical variable in relation to the person with dementia, whilst evaluating stress or depression experienced by the carer. Few studies to date have attempted the more difficult task of evaluating the balance between outcomes for the carer and those for the person with dementia; if a ‘good’ outcome for one party (whether it be reduced stress or remaining at home) were to be at the expense of a ‘poor’ outcome for the other, the value of the intervention could reasonably be questioned. It is likely that in the future there will be a shift in emphasis to the care-giving relationship, with interventions aiming to enhance outcomes for the person with dementia and carers together.

9.2. EDUCATIONAL INTERVENTIONS FOR PEOPLE WITH DEMENTIA

9.2.1. Introduction

Since dementia now tends to be diagnosed earlier, a range of interventions have been made possible that had not previously been considered feasible. It is now recommended that the diagnosis be shared with the person with dementia (Department of Health, 2001d) and this draws attention to the necessity of responding to the need of the person for information about his or her condition, and his or her role in its management. The ‘expert patient’ role has come to the fore, with several studies drawing attention to the importance of listening to the voice of people with dementia. Although, at present, there appear to be few educational interventions that have been described, this is clearly an important area for development. However, it should be noted that education may implicitly form part of approaches aimed at adjustment and coping, such as individual work using a CBT approach with the intention of modifying the person’s thoughts and fears about his or her condition (Husband, 1999) or the psychotherapeutic groups developed by Cheston and colleagues (Cheston et al., 2003a & b). The absence of didactic teaching does not exclude the possibility of group members using a variety of sources to seek information, stimulated by discussion with other people with dementia in the group sessions.

The evidence base/limitations

Current practice in this area is not reliant on a strong evidence base, with no studies directly evaluating the impact of education and training for people with dementia on knowledge and awareness. The few studies available have had different primary aims, although some extrapolation is possible.

9.2.2. Databases searched and inclusion/exclusion criteria

Information about the databases searched and the inclusion/exclusion criteria used for this section of the guideline can be found in Table 38.

Table 38. Databases searched and inclusion criteria.

Table 38

Databases searched and inclusion criteria.

9.2.3. Studies considered79

The review team conducted a new systematic search for RCTs that assessed the efficacy of educational interventions (see Table 39).

Table 39. Study information table for trials of educational interventions.

Table 39

Study information table for trials of educational interventions.

Two trials met the eligibility criteria set by the GDG (CLARKE2004, ELONIEMI2001), providing data on 221 participants. Both were published in peer-reviewed journals between 2001 and 2004. In addition, three studies were excluded from the analysis. The most common reason for exclusion was a lack of confirmed dementia diagnosis (further information about both included and excluded studies can be found in Appendix 15i).

Both included studies involved a comparison of educational interventions, but neither focused solely on the person with dementia. Two unpublished studies are also described as representing innovative practice, and reference is made to a further descriptive evaluation.

9.2.4. Educational interventions versus standard care

CLARKE2004 reports an evaluation over one year of the effects of telephone contact with care consultants employed through the Alzheimer’s Association, in Cleveland, USA. The approach involved empowering people with dementia and their carers, developing an individualised care plan, based on strengths and resources, and often made use of other services provided by the Association, including education and training programmes, support groups and respite care. Participants in the control group had access to such services through the usual channels, but did not have the input from the care consultant. On average, participating families in the project group had ten telephone consultations during the year. Outcomes for 89 people with dementia who could be interviewed at the one-year evaluation included less embarrassment and isolation related to memory loss, and less difficulty coping. For more severely impaired people with dementia, there were also fewer consultations with physicians, less use of hospital services, and decreased depression and relationship strain. The authors acknowledge that more work is needed on the details of the intervention offered, although they suggest that the improvements in embarrassment and coping may have arisen from the educational component of the intervention.

ELONIEMI2001 conducted an RCT where the intervention comprised systematic, comprehensive support by a dementia family care coordinator over a 2-year period. This included an annual training course where the person with dementia and carer were admitted together to a rehabilitation centre for 10 days at the start of the project, followed by 5-day courses 1 year and 2 years later. The course was similar to the highly successful intervention for family carers reported by Brodaty and Gresham (1989), where carers and people with dementia were similarly admitted together for a 2-week period, which involved various training interventions. Although there was a strong educational component for the carers, the emphasis for the people with dementia was on a medical and psychological assessment, with group meetings to share feelings and experiences. The outcome reported (time to institutionalisation) showed some reduction in the intervention group in the early months of the study, but by 2 years there was no difference. No specific indication is given of the effects of the educational impact of the intervention.

Bird and colleagues (2004) report an evaluation of the ‘Living with Memory Loss’ project, provided by the Alzheimer’s Association. This project offers six to eight 2-hour weekly group sessions to people in the early stages of dementia and their carers; for part of the time the people with dementia and carers meet together, but some time is also spent in separate groups. The programme is based on the pioneering support groups for people with early-stage dementia described by Yale (1995). Although some limited data are available from a naturalistic wait-list control group, essentially the outcomes compare participants’ responses at three time points: before the group, immediately at the end of the group and 3 months later. Data on 84 people with dementia indicate a high level of enjoyment of the group (86.2% enjoyed the group all or most of the time), and 91.6% reported that it had helped them at least quite often. Depression levels, as assessed by the Leeds scale for the self-assessment of anxiety and depression, reduced significantly by follow-up. No change was noted on a crude (0–4) rating of insight, with most participants having a high level of awareness of their memory problems at the outset.

Zarit and colleagues (2004) report a similar ten-session programme for people in the early stages of dementia and their family carers, described as the ‘Memory Club’; here, the evaluation related to participants’ ratings of various aspects of the programme, which were all very positive.

Finally, a descriptive paper from the Cheston and colleagues study of group support for people with dementia (Watkins et al., 2006) describes changes in awareness levels of participants in the groups, in addition to the changes in mood reported elsewhere. However, unlike the other available studies, this does focus solely on the person with dementia, rather than being confounded with the intervention for the family carer.

9.2.5. Health economics evidence

No studies were identified on the cost effectiveness of educational interventions for people with dementia.

9.2.6. Qualitative review

Evidence included

The qualitative review did not identify evidence on experiences of people with dementia and their carers of educational interventions for people with dementia.

9.2.7. Evidence summary

In relation to people with dementia, the evidence base for educational interventions is lacking at present. Education does appear to be a component of a few other programmes, which include a variety of other interventions, and of support groups, which have had a primary focus on outcomes of depression and anxiety rather than on knowledge and awareness.

9.3. DEMENTIA CARE MAPPING

9.3.1. Dementia care mapping for people with dementia

Dementia care mapping (DCM) is an observational method, developed by Kitwood and Bredin (Kitwood & Bredin, 1992), arising from the development of Kitwood’s person-centred care approach (Kitwood, 1997). It involves as much as 6 hours’ observation, recording every 5 minutes the main activity in which the person has been engaged and a subjective rating of the person’s well-being during that period. Also recorded are any occasions when a carer shows one of a number of ‘personal detractions’, where the person with dementia is depersonalised, diminished or devalued in any way. DCM has many uses and continues to be developed. It can be used to help staff understand the experience of people of dementia in their care or simply to rate the quality of a care environment (Ballard et al., 2001); it can also be used to provide feedback to staff and to assist in drawing up an action plan for change at both the level of the individual resident and the care setting as a whole (Lintern et al., 2002). A further DCM evaluation can then be used to indicate where change has occurred and generate further ideas for action (Brooker et al., 1998), in a repeated audit cycle. DCM is widely used in the UK and abroad, although the extent to which it is used systematically in an audit cycle is less clear, as is the most effective method of providing feedback and action planning.

Assisting staff in using a systematic approach to assessment and care planning may also be helpful in ensuring an individualised, person-centred approach, where the whole range of needs is addressed, rather than simply the perceived problems (Barrowclough & Fleming, 1986; Reynolds et al., 2000). There is a need for evaluation of the impact of these various approaches on outcomes relevant to the person with dementia; they represent a vehicle through which the evidence and best practice can be implemented in relation to those older people with dementia who are resident in a care home or hospital, or attend a day-care facility.

The research literature on the use of DCM has been recently reviewed by Brooker (2005). A number of studies have used DCM in the context of a cross-sectional survey, comparing different facilities or examining the association between well-being and the characteristics of residents. Others have used DCM as an indicator of the effect of an intervention, such as reminiscence or aromatherapy, or the discontinuation of neuroleptic medication. Six studies were identified by Brooker (2005) that used DCM data to change care practice in a developmental process. All the studies showed changes in DCM scores; the largest of these studies (Brooker et al., 1998) reported on three annual DCM cycles for nine care settings, with statistically significant improvements on DCM well-being scores. Brooker emphasises that DCM is only likely to change care practice in the context of an organisational framework that is supportive of person-centred care and that research is needed using outcome measures of quality of life other than DCM, in order to adequately evaluate its impact as a vehicle of change.

No evidence has been identified in relation to people with dementia of the effects of other systematic approaches to inform care planning. Individualised care depends on careful, holistic assessment of the person with dementia and his/her situation, but evidence is lacking regarding how such an assessment might best be approached.

9.3.2. Qualitative review

Evidence included

Three sources of qualitative evidence on the experiences of people with dementia and their carers that met the eligibility criteria set by the GDG have some relevance to the use of observational approaches in the care of people with dementia: case studies with evidence from six people with dementia (Sperlinger & McAuslane, 1994), case studies with evidence from professionals (Stokes, 2004), and primary research with evidence from 308 people with dementia newly admitted to care homes and also from staff (Mozley et al., 1999).

Key findings

Two sources identified in the qualitative review provide evidence that people with dementia can report on their experiences as users of services and also comment on their quality of life. The qualitative evidence therefore indicates that, along with the use of observational methods such as DCM, it is always important to attempt to elicit the views of people with dementia about care, services and interventions. According to evidence from primary research involving 308 people with dementia newly admitted to care homes, even people with quite high levels of cognitive impairment can comment on their quality of life, the essential requirements being minimum levels of orientation, attention and language (Mozley et al., 1999). These findings have implications for policy and practice as they indicate that people with dementia should be included in consultation – proxies should not be relied on and it is important both to make sure that advocates do not gloss over the need to consult people with dementia and to challenge those who exclude people with dementia. The importance of listening and giving time for consultation with people with dementia is also highlighted.

A similar message comes out of a source reporting on six case studies that demonstrate that it is possible to interview people with dementia, who can express discernible views and opinions and can have much to say (Sperlinger & McAuslane, 1994). Sperlinger and McAuslane note that the collection and interpretation of the views of people with dementia require care and suggest that good practice could include focus on a topic, repeat encounters, privacy, clarity and attention to analysis. The evidence from these case studies demonstrates that people with dementia should not be excluded from care planning, quality assessment and so on, as it is important and possible to involve them and find out what they want. These findings have implications for policy and practice – services need to recognise that people with dementia can make choices and express opinions and it is important that they allow the time necessary for effective consultation with people with dementia and if possible respond to their expressed wishes.

Support for the value of observational approaches in the care of people with dementia is provided by case studies, which demonstrate that aggressive resistance to care can be understood in social terms, and can be reduced by changes in professional behaviour (Stokes, 2004).

9.3.3. Health economics evidence

No economic studies on DCM were identified by the systematic literature search.

9.3.4. Evidence summary

The effectiveness of DCM in changing care practice in various care settings receives support from several studies, but further systematic research is required, with additional indices of the quality of care and well-being of people with dementia.

Evidence from the qualitative review indicates that care planning and assessments of the quality of care can be informed by people with dementia, including those with a relatively high degree of cognitive impairment, as they can express views and opinions about their care. Taking time to elicit the views of people with dementia about their care can be a valuable source of information about the quality of care and can be used to inform care planning.

9.4. MODELS OF TRAINING

9.4.1. Models of training for health and social care staff

Staff training is widely available in the UK (although care homes may have difficulty in releasing staff for training in non-pharmacological approaches, which would not be required as mandatory training), but there are suggestions that training on its own is not sufficient to bring about change without attention to organisational constraints and obstacles to change (Lintern et al., 2002). Such constraints may prevent what has been learned in training sessions being implemented in the workplace. High rates of staff turnover also militate against the effectiveness of one-off training sessions. Implementation may be assisted by regular input from members of a specialist dementia service; thus, for many years in the UK, some old age mental health services have provided regular input to care homes and day-care units in the form of regular consultation sessions with old age psychiatrists, community mental health nurses, clinical psychologists or other team members.

The use of non-pharmacological interventions for the management of behaviour that challenges in residential care homes has long been recommended in professional and government policies. Furthermore, it is generally believed that training care workers to use non-pharmacological interventions improves their understanding of the causes of behaviour, improves staff attitudes towards people with dementia and increases job satisfaction, reducing absenteeism and staff turnover.

Training for management of behaviour that challenges

Rovner and colleagues (1996) aimed to reduce behaviour disorders in people with dementia in a 250-bed nursing home using a programme of structured activities, combined with staff education and guidelines for psychotropic medications. The activity programme included music, exercise, crafts, relaxation, reminiscences, word games and food preparation. A creative arts therapist and two nursing aides, not usually employed by the home, developed and implemented the programme. On average, 3–6 hours of activities per week were provided for each resident. After a 2-week adjustment to the activity programme, the psychiatrist, who had taken over drug prescription from primary care physicians, re-assessed patients’ prescribed medication. Educational rounds consisting of weekly 1-hour meetings between the psychiatrist and the activities staff were held to discuss each person with dementia’s behavioural, functional and medical status. The trial lasted 6 months and demonstrated the efficacy of the programme in reducing behaviour disorders, antipsychotic drug use and physical restraints. Patients and carers appeared to enjoy being involved in the activities programme. Most staff valued the programme, although some resented ‘experts’ being brought in who altered usual care routines.

A brief in-service training programme on the psychosocial management of behaviour that challenges in UK residential care showed that, although the incidence of problematic behaviour did not change 3 months after training, staff reported a significant improvement in their ability to manage such behaviour (Moniz-Cook et al., 1998). The training was based on the person-centred care approach, with each training session following a standardised protocol: a formal talk by a consultant psychiatrist or clinical psychologist, small group work facilitated by a community psychiatric nurse, small group feedback to the whole group and a homework task. The improvements in staff reports of their ability to manage difficult behaviour were not maintained a year later, but the reasons for this were unclear.

Psychosocial, nursing and medical interventions were individually tailored for nursing home residents by a team of a psychiatrist, psychologist and nurses to determine whether this reduced the frequency and severity of behaviour that challenges (Opie et al., 2002). The team met weekly to discuss referrals and formulate individualised care plans, and numbers of interventions per resident ranged from two to seven, with an average of 4.6. The consultancies were effective and well received by staff.

Burgio and colleagues (2002) report results from a programme aimed at teaching and maintaining behaviour-management skills in a nursing home using in-house lectures and workplace training. They found that staff maintained their skills over 6 months when subjected to formal staff management by specially trained senior staff as compared to conventional, less structured staff management.

Testad and colleagues (2005) conducted a study aiming to reduce behaviour that challenges and the use of restraint for people with dementia. Staff were given guidance in groups for 1 hour a month for 6 months. It was found that, although the levels of agitated behaviour remained unchanged or increased, the training programme did lead to a reduction in the use of restraint.

Schindel-Martin and colleagues (2003) aimed to teach staff to respond effectively to cognitively impaired residents who displayed self-protective behaviours. A 7.5-hour educational programme delivered in a single workshop included all professional and non-professional staff in the care homes. Some also attended pre- and post-training focus groups. Six weeks after the training, staff demonstrated increased knowledge and skill in response techniques. Staff thought they would become more confident over time as the programme helped to relieve concerns about handling residents in ways feared to be inappropriate and unsafe.

Fossey and colleagues (2006) conducted a cluster randomised trial assessing the effects of training and support of staff in 12 nursing homes in the UK. Each nursing home had a minimum of 25% of people with dementia who were taking antipsychotic drugs. The aims of the study were to reduce drug use and agitation. The training intervention was conducted over a period of 10 months and consisted of skills training, behaviour management techniques and application of person-centred care. After 12 months, there was a 19.1% reduction in antipsychotic drug use in the intervention homes compared to the control homes. This was not at the cost of increased agitation, as there were no significant differences in levels of agitation after 12 months.

Person-centred/emotion-oriented care

The Staff Training in Assisted-Living Residences (STAR) trial provided two 4-hour workshops, four individualised on-site consultations and three leadership sessions in 15 assisted-living residences in the USA (Teri et al., 2005b). The study aimed to reinforce values of dignity and respect for residents and improve staff responsiveness, skills and job satisfaction. The workshops covered multiple approaches to learning, including didactic content, case studies, discussion, and group exercises. The individualised sessions allowed on-the-job practice of training skills. Leadership sessions included supervisors and administrators in workshops. STAR was exceptionally well received; after the training, residents showed significantly reduced levels of affective and behavioural distress compared with control residents. STAR residents improved, whereas control residents worsened, and staff with STAR training reported less adverse impact and reaction to residents’ problems and more job satisfaction.

Hillman and colleagues (2001) investigated the effect of moderating aggressive problem behaviours in the development of more positive attitudes towards nursing-home residents. Programmes encouraged staff to look at individuals’ social histories to ascertain whether these could account for current behavioural issues and to discover whether staff attitudes to individuals became more positive if their social history was known. Hillman and colleagues concluded that the use of a social history intervention alone failed to generate the expected increases in the formation of more positive attitudes towards patients and in greater perceived rewards of care giving among nursing home staff. The social history information did appear to allow staff to maintain more neutral attitudes towards patients, after statistically controlling for the impact of patients’ aggressive behaviour.

Three reports from the Netherlands have focused on emotion-oriented care (Schrijnemaekers et al., 2002; Schrijnemaekers et al., 2003; Finnema et al., 2005). Emotion-oriented care in dementia is defined as care aimed at improving emotional and social functioning and the quality of life of people with dementia. Outcomes from the first two reports were not conclusive in relation to effects on care-home residents (Schrijnemaekers et al., 2002) or on care staff, where emotion-oriented care did have a moderate effect on work-related outcomes, but these effects were not maintained over time (Schrijnemaekers et al., 2003). Finnema and colleagues (2005) assessed the effect of integrated emotion-oriented care versus usual care on older persons with dementia in a nursing home and on nursing assistants. Over 9 months, nursing assistants were trained to apply emotion-oriented care combined with a care-planning approach. Five nursing assistants in each care unit were given advanced training and one staff member per unit was trained as an adviser in emotion-oriented care. People with mild to moderate dementia showed less stress and more positive attitudes following the implementation of emotion-oriented care. Such effects were not found for people with severe dementia.

Other training interventions

An interactive computer-based training video on depression and dementia, which staff could use at their own pace, was compared with staff attending lectures or receiving workplace training (Rosen et al., 2002). Certified nursing assistants and other nursing staff from three not-for-profit homes participated in the study as part of their required training. The computer program scheduled staff for 45 minutes each month of individual self-paced training using the interactive video modules. Other participants attended a monthly 45-minute lecture with identical learning objectives delivered by an advanced-degree nurse educator. Knowledge was assessed before each monthly training session and with a post-training exam at the end of the 6-month study. Individual self-paced interactive video education for nursing-home staff resulted in greater compliance and satisfaction with training and more knowledge of core concepts compared with staff attending lectures or receiving workplace training at the end of the 6-month study. The knowledge of staff using the computer training was significantly higher after 6 months compared with the other training methods.

Nursing-home residents with moderate to severe dementia were included in a study to ascertain whether a nursing-assistant communication skills programme improved residents’ well-being, increased staff knowledge and reduced staff turnover (McCallion et al., 1999). The skills programme was delivered as part of normal in-service training. At 3 and 6 months of training, the well-being of nursing-home residents had improved. There was greater knowledge of care-giving responses and reduced turnover of staff but no increase in knowledge about dementia.

In a study by Proctor and colleagues (1999) conducted over a 6-month period, care workers from nursing and residential homes in the UK attended seminars from a hospital outreach team and received weekly visits from a psychiatric nurse to develop care-planning skills. It was found that, with a focused intervention, residents were responsive and that staff could be trained to develop skills in assessment and care planning to implement the programme in everyday care, and to assess the effect of the programme on the way residents functioned. Improvements in mood and cognitive function, but not behaviours that challenge, were identified.

Liaison services

Two trials were identified on liaison services (Baldwin et al., 2004; Ballard et al., 2002a). Baldwin and colleagues assessed whether a nurse-led mental health liaison service for older people reduced psychiatric morbidity in four acute general medical wards in a district general hospital in the UK. The intervention group received a multi-faceted intervention from a registered mental nurse with 3 years’ post-qualification experience. Interventions for depression included medication concordance, enhancing self-esteem, managing anxiety, problem solving, addressing role transitions and adjusting to loss. Liaison support comprised encouragement of person-centred care, education about mental disorder, nutrition and safety issues, and signposting to relevant services. Interventions were tailored to the person and lasted for a maximum of 6 weeks. The trial authors concluded that whilst this intervention was unlikely to reduce psychiatric morbidity, services that focus on the prevention of delirium and target specific disorders such as depression are more likely to be effective.

Ballard and colleagues (2002a) examined whether psychiatric liaison helped to reduce antipsychotic drug use and health-service utilisation for people with dementia residing in care facilities in the UK. The service was delivered by a full-time psychiatric nurse with a diploma in cognitive therapy who visited the six participating care facilities each week. Supervision was provided by a consultant old age psychiatrist with two sessions a week dedicated to the service and one session a week from a clinical psychologist. The ethos of the service was to base interventions on a detailed evaluation using antecedent-behaviour-consequence diaries in order to develop individual management plans tailored to the needs of specific residents. The service was provided for 9 months. The trial was partially successful, but the authors suggested that a more intensive intervention is probably required to improve the overall quality of care.

9.4.2. Health economics evidence

No economic evidence on models of training for health and social care staff was identified.

9.4.3. Qualitative review

Evidence included

Eight sources of qualitative evidence on the experiences of people with dementia and their carers that have some relevance to staff training met the eligibility criteria set by the GDG: primary research looking at communication involving 40 staff and 25 people with dementia (Allan, 2001); a consultation exercise on respite services involving professionals and 20 carers (Arksey et al., 2004); a personal account with evidence from a carer (Butterworth, 1995); a case study with evidence from a person with early Alzheimer’s disease (Clare et al., 2003); a case study recounting the experiences of a professional in the role of carer for his or her own relative with dementia (Smith, 1991); a descriptive account of carers’ roles in professional education with evidence from carers of people with dementia (Soliman & Butterworth, 1998); primary research with evidence from professionals and carers of people with dementia (Walker et al., 1999); and a narrative review with evidence from professionals and people with dementia (Wilkinson & Milne, 2003).

Key findings

One source, a descriptive account of carers’ roles in professional education, has direct relevance to the development of professional education and staff training programmes as it reports that input from carers can add value to professional education (Soliman & Butterworth, 1998). No source of qualitative evidence on the involvement of people with dementia in the training of professionals was identified.

Six of the sources of evidence identified by the qualitative review point to particular staff training needs identified by carers and professionals. Two of these sources identify particular areas where staff training might be valuable. A single case study of cognitive rehabilitation points to potential gains for people with dementia from staff training in cognitive rehabilitation techniques (Clare et al., 2003). A study looking at how staff could improve their communication with people with dementia notes that relationships between staff and the people with dementia they care for are important and reports that there are techniques to improve communication, such as using pictures or responding more to non-verbal communication (Allan, 2001). The findings suggest that, while many care staff have high levels of skill and expertise, they need help and support to develop these skills, with communication with people with dementia being a particular area where there is a need for training.

Three sources identified training needs that relate to the relationship between carers and staff and professionals. A study involving professionals and carers that looked at opportunities for greater carer involvement in care planning for people with dementia identified a need for staff training that addresses carer involvement and the different expectations of individual carers (Walker et al., 1999). Two sources – a literature review and a case study – point to the need for professional and staff training to address the gap between the perspectives of staff and people with dementia and carers (Wilkinson & Milne, 2003; Smith, 1991). Particular areas that are identified relate to the disclosure of the diagnosis, and also acknowledging that the perspectives of people with dementia, carers and staff may differ.

One source identified particular training needs in respite services. A consultation on respite care services for people with dementia that involved professionals and carers identified issues around the quality of services, pointing to a need for staff training and continuity to improve the quality of respite services (Arksey et al., 2004).

Finally, a personal account of a carer’s experiences identified problems with care services, including care staff often being untrained and high staff turnover (Butterworth, 1995).

9.4.4. Evidence summary

Evaluating the effects of training programmes in dementia care is a challenging task. Typically, cluster randomised trials are required, with the care home, for example, as the unit of randomisation, as training will potentially have an impact on the unit as a whole. Follow-up periods of even 9 months to a year will mean attrition of residents due to high rates of morbidity in severe dementia, and high rates of staff turnover require on-going training input. Major influences, such as a change to the person in charge of a home or other organisational changes, may dilute any effects of training. However, there are a number of positive indications from the evidence reviewed here. Training programmes that teach specific skills (such as the STAR programme) in the workplace, and which build in managerial support, do seem to be associated with positive outcomes. Changes in staff behaviour (for example, avoiding use of restraints and reducing medication use) may be easier to achieve than changes in residents’ patterns of behaviour and function but are, arguably, an important part of enhancing quality of care and well-being. Input to care homes from multidisciplinary teams providing training, support and advice on management of residents is associated with favourable outcomes, but it appears that the input may have to be more intensive than has typically been the case in the past and should address the needs of all residents with dementia, not simply those who currently present ‘problems’.

Qualitative evidence points to the potential value of input from carers into staff training and identifies particular staff training needs in relation to communicating with people with dementia and understanding their perspective, and also involving and understanding the perspective of carers.

9.5. INTERVENTIONS FOR CARERS OF PEOPLE WITH DEMENTIA

9.5.1. Introduction

When a person is diagnosed with dementia, the effect of the diagnosis on carers is often overlooked and his or her needs not properly met.

Caring for a person with dementia is often compared to bereavement and there may be many losses for carers. These may, for example, include losing the companionship of a spouse or partner, loss of a parent figure, of income and of freedom to live one’s own life. Plans for the future may be dramatically altered and consequently carers may need to learn many new skills. For example, a wife may have to take on house maintenance and bill payment, if these were responsibilities that her husband had always undertaken. In contrast to such practicalities, carers may have to provide intimate personal care, which is a difficult role, especially when looking after a parent.

Amongst all groups of carers, those providing care for people with dementia are among the most vulnerable and suffer from high levels of stress, feelings of guilt, depression and other psychological problems (Brodaty et al., 2002; Sorensen et al., 2002). They often ignore their own health needs in favour of those of the person for whom they care. They may become very exhausted and suffer from poorer physical health and feel isolated.

Carers have to make many decisions, important not only to themselves but to the person with dementia and possibly other members of the family, including children, who are affected by the impact of the disease.

To enable them to continue to look after a person with dementia and to make the best possible decisions for all concerned, carers will need information about dementia and the treatments and services available, as well as legal, financial and benefits advice. They also need to be offered emotional support and have their own health needs recognised throughout the duration of the illness and following the death of their loved ones.

The value of the carer’s role should always be acknowledged. He or she should at all times be treated with respect, to preserve his or her dignity. When carers are well supported and well informed, people with dementia also benefit as a result and are enabled to live longer in their own communities.

Support for carers in general has been given priority in both England and Wales through carers’ strategy documents80, the Carers (Equal Opportunities) Act 2004, and associated SCIE guidance81. Much of the support is provided through voluntary agencies, with some funding from local authorities. Support groups for carers have been developed in most areas of the UK, and training sessions are also offered. Alzheimer’s Society support groups and services are widely available, and a specialist nursing service, Admiral Nursing82, is available in certain areas of England and Wales; this service has as its primary aim the support of family carers of people with dementia.

9.5.2. Databases searched and inclusion/exclusion criteria

Information about the databases searched and the inclusion/exclusion criteria used for this section of the guideline can be found in Table 40.

Table 40. Databases searched and inclusion/exclusion criteria.

Table 40

Databases searched and inclusion/exclusion criteria.

9.5.3. Studies considered83

We conducted a new search for systematic reviews and RCTs that assessed the efficacy and/or safety of interventions for carers (see Table 41).

Table 41. Study information table for interventions for carers.

Table 41

Study information table for interventions for carers.

Two systematic reviews and 25 new trials met eligibility criteria. In addition, 11 studies were excluded from the analysis (further information about both included and excluded studies can be found in Appendix 15j).

For the purposes of the guideline, we categorised all new trials using the same categories as Sorensen and colleagues (2002).

9.5.4. Interventions for carers versus control interventions

For the purposes of the guideline, we used pooled effect sizes adapted from two meta-analyses (BRODATY2003D; SORENSEN2002) (see Table 42) and supplemented this with results from new RCTs that meet the SORENSEN2002 eligibility criteria (see Appendix 15j for the results from each trial).

Table 42. Summary of results table for meta-analyses of interventions for carers.

Table 42

Summary of results table for meta-analyses of interventions for carers.

9.5.5. Health economics evidence

Five non-UK studies were identified by the systematic literature search, which addressed the cost effectiveness of a range of carer interventions compared to standard care. Two studies focused on counselling, one on family counselling (Martikainen et al., 2004) and the other on individual problem-solving counselling (Roberts et al., 1999). The other three studies addressed the cost effectiveness of carer training (Brodaty & Peters, 1991), a multi-component intervention (Drummond et al., 1991) and computer support (McGuire, 1998).

No firm conclusions on cost effectiveness could be drawn from these studies, due to the inability to generalise results to the UK setting and the sparse evidence for each type of intervention, as well as the lack of statistical power evident in all five studies. Details on characteristics and results of all studies are provided in Appendix 18.

9.5.6. Qualitative review

Evidence included

Twenty sources of qualitative evidence on carers’ experiences of interventions for them met the eligibility criteria set by the GDG (no sources provided evidence on the experiences of people with dementia): primary research involving 30 carers of people with dementia (Adamson, 2001); a descriptive account of a carer’s experiences (Bailey, 2002); a personal account by a carer (Butterworth, 1995); primary research involving interviews with 37 carers (Davies & Nolan, 2003); primary research involving 16 carers of people with dementia (Fear, 2000); primary research involving 109 carers of people with dementia (Graham et al., 1997a); primary research involving 130 carers of people with dementia (Graham et al., 1997b); a descriptive account involving a carer and a person with dementia (Grant, 1993); a descriptive account involving a carer of a person with dementia (Jones, 1997); a descriptive account involving carers of people with dementia (Mellor & Glover, 2000); case studies with evidence from three carers, two support groups and two professionals (Milne et al., 2004); primary research with evidence from interviews with 20 carers (Murray et al., 1999); primary research involving 205 carers of people with dementia (Paton et al., 2004); a descriptive account with evidence from professionals and carers (Pieroni & Mackenzie, 2001); a descriptive account of one carer’s experience (Runciman, 2003); primary research with evidence from ten carers (Ryan & Scullion, 2000); primary research involving 15 carers of people with dementia (Simpson, 1997); primary research involving 176 carers of older people (Smith et al., 2003); primary research involving 19 carers with evidence from professionals and carers (Dementia Plus, 2003); and primary research involving 100 carers of people with dementia (Wald et al., 2003).

Key findings

A number of sources identified in the qualitative review provide evidence that carers may benefit from interventions for them. Findings from primary research involving 109 carers of people with dementia indicate that better informed carers have lower depression but not lower anxiety or better physical health (Graham et al., 1997a). The findings lead Graham and colleagues to suggest that information and knowledge can decrease the risk of depression in carers, and that educational interventions and the provision of information for carers at an early stage are therefore potentially beneficial and important, although it is noted that it is important to watch for carers’ raised anxiety.

Three sources identified by the qualitative review point to benefits of attending support groups for carers. A descriptive account with evidence from carers about their experiences provides evidence that support groups are valued and may assist carers, although they do not negate carers’ feelings of loneliness and emotional distress (Grant, 1993). Primary research involving carers provides evidence that members of an Alzheimer’s support group seemed better informed than other carers, and indicates that carers’ needs for information and education could potentially be met by local support groups with support from local services (Graham et al., 1997b). A descriptive account that looked at the experiences of carers attending an Alzheimer’s Society training and support programme and focused on the relationship of the carer and the person with dementia found that educational, training and support programmes or groups for carers can help with access to services and may be more accessible if run by the voluntary sector rather than the statutory sector (Mellor & Glover, 2000). This collection of carers’ views and examples of action or ideas arising as a result of attendance on a course demonstrates that carers need support and that working with carers can makes services more useful and add value.

Other sources identified by the qualitative review look at specific interventions. A descriptive account by a carer records appreciation of a helpline and professional support at times of crisis when no longer able to cope (Jones, 1997). Evidence from primary research that evaluated the piloting of carer-held records indicates that they are valued by carers and may be a way for them to achieve the better communication with professionals and the acknowledgement of their role that they want (Simpson, 1997). The study suggests that carers and professionals can share information formally with good results. A descriptive account of an intervention in which carers were asked to write a first-person account imagining being a person with dementia proposes that doing so can help carers to empathise more with what dementia means to the person affected and to understand better what is like to have dementia (Pieroni & Mackenzie, 2001). However, this source does not provide information on what carers thought of the exercise and whether it helped in any way.

The qualitative review also identified evidence of carers’ needs for education and information about dementia at the time of diagnosis and beyond. Two sources provide evidence that carers’ understanding of dementia needs to be developed. Primary research involving 205 carers found that most carers attributed changes in the person with dementia’s behaviour to causes other than dementia and many believed that the person with dementia had control of his or her behaviour – furthermore a substantial number of the carers believed that the person with dementia would return to normal (Paton et al., 2004). In addition, needs for culturally sensitive education for black and minority ethnic carers were identified by primary research involving 30 such carers of people with dementia (Adamson, 2001). Culturally sensitive services were also advocated by another source that reported on a review of the first operational year of a service development strategy for dementia care for African-Caribbean and Asian older people in Wolverhampton (Dementia Plus, 2003). The review found that carers were critical of the processes of getting help and information and would like ethnic minority specialist services.

Other evidence identified by the qualitative review indicates that carers want information. Primary research, involving 100 carers, found that carers wanted information at the time of diagnosis in order to be forewarned (Wald et al., 2003). The findings indicated that carers wanted both verbal and written – but not electronic –information from several sources. Primary research exploring carers’ attitudes and experiences when managing medication for older relatives found that carers have worries about it that need to be addressed (Smith et al., 2003).

Carers’ needs for support are identified by a number of sources. Evidence from 20 spouse carers indicates that they can find caring rewarding but need support from services as they find the loss of companionship very hard, and feelings of burden can be compounded by their workload, isolation and loss of support (Murray et al., 1999). Descriptive accounts of carers’ experiences provide evidence that carers find supportive services inadequate. Bailey (2002) reports that carers have needs for support and respite, and find that there are too few services, that they lack rights of access to services and have to fight for them; Butterworth (1995) identifies problems with an initial lack of information and with deficiencies of support and suggests that specific support for carers might be beneficial in reducing strain. Runciman (2003) suggests that direct support is more likely to be offered to parents of disabled children than carers of people with dementia and points to a need for staff to be trained to work with carers. Three sources identify particular needs for support, including emotional support, and help for carers at the time, when they may feel guilty, of considering admission of the person with dementia to residential care (Davies & Nolan, 2003; Ryan & Scullion, 2000) and after admission (Milne et al., 2004). Findings suggest that support may help carers to see the move more positively.

Of relevance to the design of interventions for carers is a source reporting on primary research involving 16 carers that looked at whether there are differences in caring styles between men and women and found evidence of gender differences in the approach to caring – men tended to use problem-solving strategies whereas women tended to use emotion-focused strategies (Fear, 2000). These differences suggest that there may be value in developing supportive interventions for carers on gender lines.

9.5.7. Evidence summary

There is now extensive literature on interventions with family carers of people with dementia. A wide range of interventions has been developed and evaluated using an equally wide range of outcome domains and measures. This makes comparisons between studies difficult at times, both in terms of judging whether two intervention programmes share common features and in relation to the comparability of different outcomes. The most recent meta-analysis (Brodaty et al., 2003d) included 30 controlled trials and concluded that the quality of studies had improved over the period searched (1985–2001). Although outcomes were variable, overall there appeared to be at least a small intervention effect. Interventions involving training or stress management or involving the person with dementia alongside the carer appeared to have the largest effect on the carer’s psychological health and well-being. Sorensen and colleagues (2002) report a larger meta-analysis, including studies where carers of people with dementia were not specifically targeted, although in all the studies the care recipients had an average age of 60 or over. The results from this analysis (considering RCTs only), suggested that psychological therapy (typically CBT) and psychoeducation programmes had the best outcome in relation to depression (although effect sizes were still small), whereas multi-component interventions were associated with effects of medium size on carer burden and well-being. It is noteworthy that effect sizes were lower in studies where only carers of people with dementia had been included.

For this review, 25 new studies have been identified, meeting the criteria established for the Sorensen meta-analysis. Again, the results from these studies are mixed, with around a quarter not identifying a significant effect of the intervention being evaluated on relevant outcome variables; others had effects on some measures but not others. Several of the recently reported studies form part of the REACH (Resources for Enhancing Alzheimer’s Caregiver Health) initiative in the USA, where six centres collaborated to use common measures and procedures, whilst evaluating interventions developed and implemented independently at each site. At a 6-month evaluation, active interventions, whatever the type, were superior to control conditions in relation to carer burden (Gitlin et al., 2003). Differences in treatment response were identified in relation to gender, ethnicity, education and relationship with the person with dementia. Gitlin and colleagues conclude that interventions should be ‘multi-component and tailored’.

It is clear that carer interventions can be effective in relation to psychological health, burden and well-being, although the relatively small effect sizes for some domains and the large variability between studies suggest that there is much to be learned regarding which interventions will be most helpful for which carers. No one approach is sufficient to meet the range of needs, situations and preferences of carers. Multi-component interventions perhaps offer the best chance of success, in combining, say, psychoeducation, skills training and support groups, and there is increasing development of telephone and internet-based systems for provision of information and support, which may be a useful additional component. The relative efficacy of psychological therapy, usually CBT, on symptoms of depression and anxiety is evident and is likely be most helpful when targeted at those care givers whose anxiety and depression levels are within, or close to, the clinical range. The carer literature also gives encouraging indications that interventions with carers will often have a positive effect on the care recipient, in relation to the person’s behaviour or function, or the length of time remaining at home.

The qualitative review identified evidence that carers benefit from and/or value educational/information-giving interventions, support groups and helplines, all of which can be provided by voluntary sector organisations. However, evidence suggests that providers of educational interventions for carers of people with dementia at an early stage after diagnosis should be aware of the possibility that education about dementia may sometimes have an adverse effect on a carer’s anxiety. The qualitative review also identified evidence of particular needs relating to interventions for carers: interventions providing education and information for carers, including at the time of diagnosis, and addressing medication management; support groups where carers may learn from one another and which can provide education and information with support from local services; and educational and supportive interventions for black and minority ethnic carers that are culturally oriented. Further evidence suggests that when designing educational and training interventions for carers it may be useful to take account of gender differences in approaches to caring.

9.6. RESEARCH RECOMMENDATIONS

9.6.1. Psychological interventions for carers of people with dementia

For carers of people with dementia, is a psychological intervention cost effective when compared with usual care?

Why this is important

Those providing care for people with dementia are one of the most vulnerable groups of carers and often have high levels of stress, feelings of guilt, depression and other psychological problems. They often ignore their own health needs in favour of those of the person for whom they care. They may become exhausted, have poor physical health and feel isolated. Current research suggests that psychological interventions may be effective, but there is insufficient evidence to establish cost effectiveness. The promotion of good mental health in older people (many carers are the spouses of people with dementia) – included in standard 7 of the National Service Framework for older people – is vital, especially because the proportion of people with dementia will rise in line with our aging population. Support for carers in general has been given priority in England and Wales through Carers’ Strategy documents. Further research is urgently needed to generate a better evidence base for the update of this guideline.

9.6.2. The effect of staff training on behaviour that challenges

Does training of care staff in dementia-specific person-centred care lead to improvement in behaviour that challenges and reduced prescription of medication to control such behaviour in people with dementia requiring 24-hour care when compared with current practice?

Why this is important

According to prescribing advice published by the Royal College of Psychiatrists, there is a history of inappropriate use of antipsychotic drugs in people with dementia. The proportion of people with dementia with behaviour that challenges tends to rise as the dementia progresses; therefore this issue is of particular importance for people requiring 24-hour care.

9.7. CLINICAL AND SOCIAL CARE RECOMMENDATIONS

9.7.1. Training and development of health and social care staff

9.7.1.1.

Health and social care managers should ensure that all staff working with older people in the health, social care and voluntary sectors have access to dementia-care training (skill development) that is consistent with their roles and responsibilities. [For the evidence, see section 9.4]

9.7.1.2.

When developing educational programmes for different health and social care staff, trainers should consider the following elements, combined according to the needs of the staff being trained (if staff care for people with learning disabilities, the training package should be adjusted accordingly).

  • Early signs and symptoms suggestive of dementia and its major subtypes.
  • The natural history of the different types of dementia, the main signs and symptoms, the progression and prognosis, and the consequences for the person with dementia and his or her carers, family and social network.
  • The assessment and pharmacological treatment of dementia including the administration of medication and monitoring of side effects.
  • Applying the principles of person-centred care when working with people with dementia and their carers; particular attention should be paid to respect, dignity, learning about each person’s life story, individualising activities, being sensitive to individuals’ religious beliefs and spiritual and cultural identity, and understanding behaviour that challenges as a communication of unmet need.
  • The importance of and use of communication skills for working with people with dementia and their carers; particular attention should be paid to pacing of communication, non-verbal communication and the use of language that is non-discriminatory, positive, and tailored to an individual’s ability.
  • Assertive outreach techniques to support people who may not be engaged with services.
  • A clear description of the roles of the different health and social care professionals, staff and agencies involved in the delivery of care to people with dementia and basic advice on how they should work together in order to provide a comprehensive service.
  • Basic introduction to local adult protection policy and procedures, including the reporting of concerns or malpractice and, in particular, who to contact.
  • The palliative care approach. [For the evidence, see section 9.4]
9.7.1.3.

Managers of local mental health and learning disability services should set up consultation and communication channels for care homes and other services for people with dementia and their carers. [For the evidence, see section 9.4]

9.7.1.4.

Liaison teams from local mental health and learning disability services should offer regular consultation and training for healthcare professionals in acute hospitals who provide care for people with dementia. This should be planned by the acute hospital trust in conjunction with mental health, social care and learning disability services. [For the evidence, see section 9.4]

9.7.1.5.

Evidence-based educational interventions, such as decision-support software and practice-based workshops84, to improve the diagnosis and management of dementia should be made widely available and implemented in primary care. [For the evidence, see section 6.3.1]

9.7.2. Interventions for the carers of people with dementia

9.7.2.1.

Those carrying out carers’ assessment should seek to identify any psychological distress and the psychosocial impact on the carer. This should be an ongoing process and should include any period after the person with dementia has entered residential care. [For the evidence, see sections 4.1.4, 4.6.4 and 9.5.1]

9.7.2.2.

Care plans for carers of people with dementia should involve a range of tailored interventions. These may consist of multiple components including:

  • individual or group psychoeducation
  • peer-support groups with other carers, tailored to the needs of individuals depending on the stage of dementia of the person being cared for and other characteristics
  • support and information by telephone and through the internet
  • training courses about dementia, services and benefits, and communication and problem solving in the care of people with dementia
  • involvement of other family members as well as the primary carer in family meetings. [For the evidence, see section 9.5]
9.7.2.3.

Consideration should be given to involving people with dementia in psychoeducation, support, and other meetings for carers. [For the evidence, see section 9.5]

9.7.2.4.

Health and social care professionals should ensure that support, such as transport or short-break services, is provided for carers to enable them to participate in interventions. [For the evidence, see section 4.6.4]

9.7.2.5.

Carers of people with dementia who experience psychological distress and negative psychological impact should be offered psychological therapy, including cognitive behavioural therapy, conducted by a specialist practitioner. [For the evidence, see section 9.5]

Here, and elsewhere in the guideline, each study considered for review is referred to by a study ID in capital letters (primary author and date of study publication).

Further information can be found on the Department of Health’s Caring about Carers website (www​.carers.gov.uk/Index.htm) and the National Assembly for Wales’ Carers website (www. wales.gov.uk/subicarersnew/index.htm).

Further information can be found on the For Dementia website (www​.fordementia.org.uk/index.htm).

Here, and elsewhere in the guideline, each study considered for review is referred to by a study ID in capital letters (primary author and date of study publication, except where a study is in press or only submitted for publication, then a date is not used).

See, for example, Downs et al., 2006.

Footnotes

79

Here, and elsewhere in the guideline, each study considered for review is referred to by a study ID in capital letters (primary author and date of study publication).

80

Further information can be found on the Department of Health’s Caring about Carers website (www​.carers.gov.uk/Index.htm) and the National Assembly for Wales’ Carers website (www. wales.gov.uk/subicarersnew/index.htm).

81

Further information can be found on the SCIE website (www​.scie.org.uk/publications​/practiceguides​/carersguidance/index.asp).

82

Further information can be found on the For Dementia website (www​.fordementia.org.uk/index.htm).

83

Here, and elsewhere in the guideline, each study considered for review is referred to by a study ID in capital letters (primary author and date of study publication, except where a study is in press or only submitted for publication, then a date is not used).

84

See, for example, Downs et al., 2006.

Copyright © 2007, The British Psychological Society & The Royal College of Psychiatrists.

All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Enquiries in this regard should be directed to the British Psychological Society.

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