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Dementia: Assessment, management and support for people living with dementia and their carers. London: National Institute for Health and Care Excellence (NICE); 2018 Jun. (NICE Guideline, No. 97.)
Dementia: Assessment, management and support for people living with dementia and their carers.
Show detailsThe need for improvement in dementia care has increasingly become a focus of research, development and policy initiatives. The demand for high quality dementia care through a skilled workforce will increase as both dementia prevalence and diagnosis rates rise.
The focus of the Prime Minister’s Challenge on Dementia 2020 (DH, 2015) and the 2015–16 Mandate from Government to Health Education England (HEE) is the requirement for an i nformed and effective workforce for people living with dementia. This means all health and social care staff involved in the care of people who may have dementia should have the necessary dementia core skills, education and training to provide the best quality care in the roles and settings where they work.
The Prime Minister’s Challenge on Dementia 2020 Implementation Plan (DH, 2016) presents the progress that has been made in ensuring that the dementia workforce is fully equipped through the development of such initiatives as the Core Skills, Education and Training Framework led by Skills for Health and HEE. One of the questions often raised, however, is what difference does a well-developed workforce make to the experiences of people living with dementia and their carers?
The Implementation Plan, supported by other reports such as the “Fix Dementia Care” (Alzheimer’s Society, 2016), demonstrate a direct correlation between poor skills, education and training to poor outcomes, poor effectiveness and poor experience.
A skilled educated and trained workforce can improve the experience of the person living with dementia and their carers throughout the dementia pathway, from diagnosis, care and treatment to living well and the end of life. The experience can potentially be improved at:
- First contact, as primary care has an increased focus and understanding of dementia leading to a timely diagnosis and increased diagnosis rates.
- Assessment and treatment, as memory assessment services improve their response times, discharge plans and ongoing care and support plans and coordination.
- Acute care, as staff understand the alternative options to hospital admission and, if admission is necessary, ensure people with dementia and their carers receive personalised care helping to reduce length of stay, hospital incidents, improved satisfaction, co-ordinated discharge and reduced readmissions.
- Post-diagnostic care, as staff working in communities support people living with dementia to remain independent and active citizens for as long as possible delaying the possible need for residential care and improving the quality of life both of the person living with dementia and their carers/families.
- Care homes, as care home staff deliver personalised co-ordinated and dignified care and support reducing the possible need for hospital admission, reducing incidents and improving satisfaction.
- End of Life, as palliative care and hospice teams include the care and support of people living with dementia as part of their commissioned services and service offer increasing choice and control for people with dementia at the end of life.
16.1. Staff training
Review question
What effect does training for staff working with people living with dementia have upon the experiences of people living with dementia in their care?
16.1.1. Introduction
This question considered both quantitative and qualitative evidence on effective models of staff training for improving the care and experiences of people living with dementia. The quantitative part of this review included a collaboration between the NICE Guideline Updates Team and the Cochrane Dementia and Cognitive Impairment Group.
Table 91
Review summary: qualitative evidence.
Table 92
Review summary: quantitative evidence.
Qualitative studies needed to report the views of either people living with dementia or their carers, and match the criteria given in Table 91. The aims of this review were to establish the most effective ways of managing the transition between different settings for people living with dementia, and their carers. The review focused on identifying studies that fulfilled the conditions specified in Table 40. For full details of the review protocol, see Appendix C.
Randomised controlled trials were included if they explored the effectiveness of staff training interventions for improving the experiences of people living with dementia and meet the criteria given in Table 92. Papers were excluded if they:
- did not include the views of people living with dementia or their carers
- were not in the English language
- were abstracts, conference proceedings or other unpublished studies.
For the purposes of this question, a care provider is defined as an organisation that delivers health and/or social care. This includes all providers registered with the Care Quality Commission as well as unregistered providers such as Community Based Support Services which may be delivering health and social care through a commissioning agreement.
16.1.2. Evidence review
16.1.2.1. Qualitative evidence
A single search was conducted for all the qualitative questions included in this guideline, which returned a total of 10,085 references. References were screened based on their titles and abstracts, and the full texts of 11 references that were potentially relevant to the review question were requested. All of these studies were excluded on full text review, with reasons for exclusion presented in Appendix F.
16.1.2.2. Quantitative evidence
The RCT data included in this review primarily came from an ongoing Cochrane review on ‘Educational interventions for improving clinical competencies of medical practitioners to detect, diagnose, and manage people with cognitive impairment and dementia’. Whilst this review was not published at the time this question was considered in the guideline, the list of included studies was provided by the Cochrane Dementia and Cognitive Impairment Group, and these studies were screened at full text level to identify relevant studies. In addition, the studies included in 4 other recent, high-quality systematic reviews were also screened to identify any additional studies not included in the Cochrane review, particularly studies primarily targeted at social care rather than healthcare staff. The systematic reviews used as sources for RCT data are summarised in Table 93. For the full evidence tables and full GRADE profiles of included RCTs, please see Appendix E and Appendix G. References for the included studies are given in appendix I.
Table 93
Systematic reviews used to identify primary studies.
A total of 88 unique studies were identified from these reviews, and these studies were themselves screened at full text leve l. Twenty-five RCTs met the criteria for inclusion (reported in 26 papers), with the remaining 62 studies excluded, with reasons for exclusion given in Appendix F. The included studies are summarised in Table 94.
Table 94
Summary of included studies – RCT evidence.
16.1.3. Health economic evidence
Standard health economic filters were applied to the clinical search for this question, and a total of 1,414 citations was returned. Following review of titles and abstracts, no full text studies were retrieved for detailed consideration. Therefore, no relevant cost–utility analyses were identified for this question
16.1.4. Evidence statements
16.1.4.1. Residential care staff training
16.1.4.1.1. Flexible education
Low- to moderate-quality evidence from 1 RCT containing 351 people could not differentiate quality of life, pain, behavioural and psychological symptoms of dementia or the use of physical restraint between people living with dementia in residential care where staff were offered a flexible training package, and people living with dementia in residential care where no specific additional training was offered.
16.1.4.1.2. Activity provision
Moderate-quality evidence from 1 RCT containing 159 people could not differentiate quality of life, cognition, challenging behaviours, depression, anxiety or the total number of medicines prescribed between people living with dementia in residential care where staff were offered training in activity provision, and people living with dementia in residential care where no specific additional training was offered.
16.1.4.1.3. Multisensory stimulation
Moderate-quality evidence from 1 RCT containing 121 people found improvements in verbal communication and increases in the duration of morning care for people living with dementia in residential care where staff were offered training in multisensory stimulation, compared with people living with dementia in residential care where no specific additional training was offered.
16.1.4.1.4. Behaviour management
Very low-quality evidence form 1 RCT containing 79 people could not differentiate between levels of agitation in people living with dementia in residential care where staff were offered behavioural management training, and people living with dementia in residential care where no specific additional training was offered.
16.1.4.1.5. Feeding skills
Very low-quality evidence from 1 RCT containing 20 people found higher levels of feeding difficulties in people living with dementia in residential care where staff were offered feeding skills training, compared with people living with dementia in residential care where no specific additional training was offered.
16.1.4.1.6. Dementia care mapping
Moderate- to high-quality evidence from 1 RCT containing 159 people found reductions in agitation and the number of falls in people living with dementia in residential care where staff were offered training in dementia care mapping, compared with people living with dementia in residential care where no specific additional training was offered, but could not differentiate quality of life or behavioural and psychological symptoms of dementia.
16.1.4.1.7. Person-centred care
Moderate- to high-quality evidence from up to 2 RCTs containing 269 people found less agitation and improvements in quality of life, behavioural and psychological symptoms of dementia and the number of falls in people living with dementia in residential care where staff were offered training in person-centred care, compared with people living with dementia in residential care where no specific additional training was offered.
16.1.4.1.8. Awareness and communication
Low- to moderate-quality evidence from 1 RCT containing 65 people found improvements in quality of life in people living with advanced dementia in residential care who had little or no verbal communication where staff were offered training in identifying signs of awareness in people with advanced dementia and improving their communication skills, compared with people living with dementia in residential care where no specific additional training was offered, but could not differentiate wellbeing, cognition or behavioural symptoms.
16.1.4.1.9. Challenging behaviours
Very low- to moderate-quality evidence from up to 2 RCTs containing 350 people found less agitation in people living with dementia in residential care where staff were offered training in managing challenging behaviours, compared with people living with dementia in residential care where no specific additional training was offered, but could not differentiate aggressive behaviours, quality of life, numbers of hospitalisations or numbers of psychotropic medicines prescribed.
Very low- to low-quality evidence from 1 RCT containing up to 67 people could not differentiate agitation, aggressive behaviours or quality of life between people living with dementia in residential care where staff were offered training in managing challenging behaviours and additional peer support, and people living with dementia in residential care where no specific additional training was offered.
16.1.4.1.10. Communication skills
Low- to moderate-quality evidence from 1 RCT containing 105 people found improvements in depression and verbally aggressive behaviours and reduced use of mechanical restraints in people living with dementia in residential care where staff were offered training in communication skills, compared with people living with dementia in residential care where no specific additional training was offered, but increased levels of disorientation. The evidence could not differentiate physically aggressive behaviours, use of chemical restraints or levels of irritability or withdrawal.
16.1.4.1.11. Emotion-oriented care
Moderate- to high-quality evidence from 1 RCT containing 146 people could not differentiate cognition, agitation, affect or satisfaction between people living with dementia in residential care where staff were offered training in emotion-oriented care, and people living with dementia in residential care where no specific additional training was offered.
16.1.4.1.12. Reducing antipsychotic drug use
Very low- to moderate-quality evidence from 1 RCT containing 338 people found a lower proportion of people taking antipsychotics in residential care homes where staff were offered psychosocial care training, compared with people living with dementia in residential care where no specific additional training was offered, but could not differentiate rates of falls or levels of aggression and wellbeing.
16.1.4.1.13. Towel bathing and person-centred showering
Low- to moderate-quality evidence from 1 RCT containing 73 people found improvements in levels of aggression and discomfort in people living with dementia in residential care where staff were offered training in either towel bathing or person-centred showering, compared with people living with dementia in residential care where no specific additional training was offered, but could not differentiate agitation or specific types of aggression.
16.1.4.1.14. Apathy management
Low- to moderate-quality evidence from 1 RCT containing 230 people found reduced levels of apathy in people living with dementia in residential care where staff were offered training in managing apathy, compared with people living with dementia in residential care where no specific additional training was offered, but could not differentiate other measures of apathy, activities of daily living or behavioural and psychological symptoms of dementia.
16.1.4.1.15. Non-verbal emotion signals
Very low-quality evidence from 1 RCT containing up to 68 people could not differentiate dementia symptoms or emotions between people living with dementia in residential care where staff were offered training in sensitivity to non-verbal emotion signals, and people living with dementia in residential care where no specific additional training was offered.
16.1.4.2. Residential care staff and nurse training
16.1.4.2.1. Communication, empathy and conflict resolution
Low- to moderate-quality evidence from 1 RCT containing 325 people found improvements in communication and interaction between people living with dementia in residential care where nurses and other staff were offered training in communication, empathy development and conflict resolution, compared with people living with dementia in residential care where no specific additional training was offered, but could not differentiate the level of involvement of other family members in care.
16.1.4.3. Restraint use reduction
Very low- to moderate-quality evidence from up to 2 RCTs containing 288 people found reductions in the use of physical restraints on people living with dementia in residential care where nurses and other staff were offered training in restraint use reduction, compared with people living with dementia in residential care where no specific additional training was offered, but could not differentiate numbers of medicines prescribed, functional ability, falls, agitation or aggressive behaviours.
16.1.4.4. Residential care nurse training
16.1.4.4.1. Managing depression
Moderate-quality evidence from 1 RCT containing 97 people could not differentiate levels of depression between people living with dementia in residential care where nurses were offered training in managing depression, and people living with dementia in residential care where no specific additional training was offered.
16.1.4.4.2. Restraint use reduction
Low-quality evidence from 1 RCT containing 126 people could not differentiate levels of restraint use between people living with dementia in residential care where nurses were offered training in restraint use reduction, and people living with dementia in residential care where no specific additional training was offered.
16.1.4.4.3. Dementia care mapping
Low- to moderate-quality evidence from 1 RCT containing 192 people found improvements in behavioural and psychological symptoms in people living with dementia in residential care where staff were offered training in dementia care mapping, compared with people living with dementia in residential care where no specific additional training was offered, but could not differentiate agitation or quality of life.
16.1.4.5. Occupational therapist training
16.1.4.5.1. Interdisciplinary training
Low- to moderate-quality evidence from 1 RCT containing 33 people could not differentiate activities of daily living or quality of life between people living with dementia offered occupational therapy by therapists who had been given specific additional training in dementia, and people living with dementia offered occupational therapy by therapists who had been given no specific additional training.
16.1.4.6. GP training
16.1.4.6.1. Flexible education
Low- to moderate-quality evidence from 1 RCT containing 351 people could not differentiate quality of life, pain, behavioural and psychological symptoms of dementia or the use of physical restraint between people living with dementia in residential care where GPs were offered a flexible training package, and people living with dementia in residential care where no specific additional GP training was offered.
16.1.4.7. Pooled analysis: person-centred care versus control
Moderate- to high-quality evidence from up to 5 RCTs containing 941 people found improvements in quality of life and levels of agitation in people living with dementia in residential care where staff were offered training falling under the broad category of person-centred care, compared with people living with dementia in residential care where no specific additional training was offered, but low-quality evidence could not differentiate levels of behavioural and psychological symptoms of dementia.
16.1.4.8. Health economic evidence
No health economic evidence was identified for this review question.
16.1.5. Evidence to recommendation
| Relative value of different outcomes | The committee agreed that, since the aim of this review question was to identify staff training interventions that improve the experience of the person living with dementia, outcomes for that individual (such as quality of life or behavioural and psychological symptoms) would be most relevant. They noted that the review was not focused on identifying interventions that improve the experience of staff and, therefore, trials that only reported on outcomes for staff would not be relevant to include within the review. |
|---|---|
| Trade-off between benefits and harms | Person-centred and outcome-focussed care The committee agreed there were a number of trials (Chenoweth 2009 and 2014, Davison 2007, Deudon 2009, Finnema 2005, Fossey 2006 and van de Ven 2013) that, whilst including quite disparate training interventions, could be grouped under the general heading of person-centred care. Whilst the committee acknowledged that there were difficulties in combining the data from these studies, it was agreed that is was an appropriate thing to do, as the studies reported a range of positive and negative findings without obvious differences in study design which could explain the different outcomes. Therefore, it was agreed to be appropriate to calculate the average effectiveness across this group of studies, to ensure biased recommendations were not made by focusing only on the positive studies. The meta-analysis found significant improvements in both agitation and quality of life in people treated by staff offered person-centred training interventions, and the committee agreed it was therefore appropriate to recommend such interventions. No clear evidence was identified for any individual training programme (such as dementia care mapping) being more effective than another, and therefore the committee agreed it was appropriate to make a more general recommendation which highlighted the key elements of the interventions, rather than being more prescriptive on exactly how an intervention should be structured or delivered. The committee agreed that concerns had been raised by the LGBT community that their needs are not being addressed. Therefore, the bullet point “Respecting the person’s identity, sexuality and culture” was included. In the recommendation on training for care providers, the committee agreed it was appropriate to specify those components which were consistently included as part of the trials in the evidence base. This included general education about dementia, assessing and responding to individual’s symptoms and needs and understanding and managing non-cognitive symptoms such as agitation, aggression and pain. These trials also all included some follow-up sessions to provide feedback to staff, and give advice on specific complex cases. This recommendation also included items on antipsychotics and restraint (explained below), and a specific recommendation for younger people living with dementia, based on evidence from and explained in section 17. Antipsychotics and restraint use Trials which focused primarily on managing agitation and/or aggression whilst reducing the use of ether antipsychotics medicines or physical restraint were also identified. The aim of these trials was somewhat different, in that rather than trying to improve symptoms, they focused on reducing the use of potentially harmful medicines or procedures, without an increase in symptoms over a defined time period. The committee noted there was clear evidence from these studies that an approximately 50% reduction could be achieved in the use of either antipsychotics or physical restraint without any significant increase in behavioural or other symptoms, and the committee therefore agreed it was appropriate to include this in the recommendation for training interventions. Multi-sensory stimulation The committee agreed there was some evidence of benefits from a multisensory stimulation intervention in people with moderate to severe dementia. It noted that in practice these interventions are sometimes used across a wider range of individuals, but agreed the evidence was not sufficient to extrapolate beyond this more limited population (particularly, since it was only based on evidence from a single trial). Since the same quantity of evidence was not available as for person-centred care, they agreed that it was appropriate to restrict this recommendation to a ‘consider’ recommendation. Other interventions The evidence base also contained a number of more specific targeted interventions. These again were often presented under the broad heading of person-centred care, but only focused on a specific subset of care rather than a whole person-centred approach. The committee agreed these trials did not demonstrate the same positive results as the more inclusive training programmes and agreed that it was not possible to establish whether this was because these interventions are less effective, or because the trials were too small to detect an effect. It was therefore agreed that the evidence was not sufficient to make any recommendations based on this evidence. |
| Consideration of health benefits and resource use | Person-centred and outcome-focussed care The committee noted there was a lack of cost-effectiveness evidence available to support recommendations on this topic, and therefore were conscious that it was important not to impose substantial additional costs. The committee therefore agreed that it was appropriate to subdivide the recommendation into two specific target groups. The first group is comprised of staff directly providing care and support to people living with dementia. The committee agreed it was this group for whom training would have the highest impact, and therefore it was appropriate, in line with the interventions shown to be effective in the trials, to recommend this training be face-to-face and include the option for mentoring or additional support after the initial intervention is delivered. It noted that there were a number of ways in which training was delivered within the context of the trials whereby in some studies all staff were trained by an external provider, whilst in others the provider only trained a small number of staff, who then passed on that knowledge to their colleagues. The committee agreed that both of these approaches were appropriate to consider in practice. The second group of individuals considered in the recommendations consists of care and support providers more generally. This may include staff working in care environments or with people living with dementia, but not directly involved in providing care and support themselves. The committee agreed this group would also benefit from training, but it was not possible to justify the costs associated with providing face-to-face training in this larger group. The committee noted that in practice this was often provided as online training, and agreed that for this broader group this was an appropriate approach to take. Antipsychotics and restraint use The committee agreed that, even though there would be additional costs associated with delivering this training, this would be offset by considerable reductions in the costs of antipsychotic prescribing, provided that reductions similar to those found in the studies could be achieved in practice. Multi-sensory stimulation The committee noted that the primary cost associated with multisensory stimulation is the initial cost of purchasing the equipment, and staff training costs. It therefore agreed it was important the recommendation focus on training staff in the use of such equipment and techniques (which would only be relevant if the equipment was available at their site), rather than recommending additional sites purchase that equipment as there was not sufficient evidence to justify the purchase of such equipment as part of the recommendation. |
| Quality of evidence | The committee agreed the evidence underpinning the recommendations on person-centred care and multisensory stimulation was of moderate to high quality. However, it noted that the evidence base was entirely composed of studies conducted in care homes, and not in other clinical or community settings. The committee agreed that the principles of good training would be similar across these different settings, and therefore it was appropriate to extrapolate the evidence base from care homes to being applicable to all care and support providers. However, it also agreed that there may be other interventions that are more effective in these other settings, and therefore made research recommendations to look at the most effective training interventions for community staff and acute hospital staff. |
| Other considerations | The committee noted that in a number of the included studies, carers were also invited to attend the training alongside staff. Whilst there was no direct evidence that this led to improved outcomes, the committee agreed that it was a positive thing to encourage, both because of the gains that carers could make themselves, and because they provided a valuable additional perspective at any training. The committee agreed the evidence did not justify recommending additional resources be devoted to training specifically organised for carers but agreed it was appropriate to consider inviting carers along to training sessions that were already being run, provided sufficient capacity is available. Sections of recommendations referring to younger people were also informed by the evidence review on the specific needs of younger people living with dementia (section 17). |
16.1.6. Recommendations
- 111.
Care and support providers should provide all staff with training in person-centred and outcome-focused care for people living with dementia, which should include:
- understanding the signs and symptoms of dementia, and the changes to expect as the condition progresses
- understanding the person as an individual, and their life story
- respecting the person’s individual identity, sexuality and culture
- understanding the needs of the person and their family members or carers
- the principles of the Mental Capacity Act 2005 and the Care Act 2014.
- 112.
Care providers should provide additional face-to-face training and mentoring to staff who deliver care and support to people living with dementia. This should include:
- understanding the organisation’s model of dementia care and how it provides care
- how to monitor and respond to the lived experience of people living with dementia, including adapting communication styles
- initial training on understanding, reacting to and helping people living with dementia who experience agitation, aggression, pain, or other behaviours indicating distress
- follow-up sessions where staff can receive additional feedback and discuss particular situations
- advice on interventions that reduce the need for antipsychotics and allow doses to be safely reduced
- promoting freedom of movement and minimising the use of restraint
- if relevant to staff, the specific needs of younger people living with dementia and people who are working or looking for work.
- 113.
Consider giving carers and/or family members the opportunity to attend and take part in staff dementia training sessions.
- 114.
Consider training staff to provide multi-sensory stimulation for people with moderate to severe dementia and communication difficulties.
16.1.7. Research recommendations
- 18.
What is the cost effectiveness of using a dementia-specific addition to the Care Certificate for community staff, including dementia-specific elements on managing anxiety, communication, nutritional status and personal care?
- 19.
What is the effectiveness of training acute hospital staff in managing behaviours that challenge in people living with dementia on improving outcomes for people and their carers?
For more details on the research recommendation made, and the rationale behind it, see appendix L.
- Staff training - DementiaStaff training - Dementia
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