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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 detailsAt any one time up to 25% of acute hospital beds are occupied by people living with dementia. People with dementia often experience longer durations of hospital admission, delays in leaving hospital and reduced levels of independent functioning (CQC 2017, DAA 2016). Over recent years there have been a range of initiatives to focus action and attention on improving the experience and outcomes of hospital care for people with dementia (DAA, Dementia Friendly Hospitals Charter & Dementia CQUIN). Acute hospital admission can be a time of distress, confusion and delirium for someone with dementia. These factors may contribute to a decline in global functioning and reduced ability to return home to independent living. The achievement of improved or at least maintained levels of independent functioning is a minimum expectation following a period of acute care. This is a key opportunity in the persons journey with dementia for holistic comprehensive care planning to be undertaken with the person and their significant others.
Acute hospital admission has been identified as a key opportunity for people with previously undiagnosed dementia to access appropriate assessment & diagnosis of dementia to; improve their care and treatment while in hospital, facilitate appropriate early discharge and enable access to a full range of post-diagnostic support and interventions.
The extent to which the needs of people with dementia experiencing an acute hospital admission are understood and effectively met remains variable across the country (CQC 2014 & 2017, RcPsych 2016). Many examples of improvements in this area of care over recent years have been identified, strengthened by local commissioning arrangements and good clinical leadership, but there remains significant local variation in how effectively people experiencing dementia in a hospital setting are diagnosed and then provided with appropriate tailored individual support and discharge planning.
8.1. Caring for people living with dementia who are admitted to hospital
Review question
- How should people living with dementia be cared for when admitted to hospital?
8.1.1. Introduction
The aim of this review was to identify the most appropriate ways to care for people living with dementia when they are admitted to hospital and to identify any harms that may be caused by failures in or inappropriate models of hospital care for people living with dementia. The review focused on identifying studies that fulfilled the conditions specified in Table 37. For full details of the review protocol, see Appendix C.
Table 37
Review summary: inpatient care for people living with dementia.
8.1.2. Evidence review
A systematic literature search was carried out to identify any comparative quantitative study designs (for example RCTs, non-randomised controlled trials, before and after studies and cohort studies). A total of 8,857 references were screened at the title and abstract level, with 46 potentially relevant references being ordered for full text review. Of these references, 5 were selected for inclusion based on their relevance to the review protocol. The excluded studies are listed, with reasons for their exclusion, in Appendix F. Evidence tables for the included studies are presented in Appendix E, with GRADE profiles in appendix G.
8.1.2.1. Description of included studies
The characteristics of the included studies are summarised in Table 38. References for the included studies are given in appendix I.
Table 38
Included studies.
8.1.3. Health economic evidence
A systematic literature search was undertaken to identify existing cost–utility analyses (CUAs) evaluating how people living with dementia should be cared for when admitted to hospital. In total, 3,367 articles were returned, of which 1 was selected as potentially relevant and retrieved for full-text review, after which it was deemed relevant and included.
Medical and mental health unit
Tanajewski et al. (2015) compared the cost effectiveness of a dedicated medical and mental health unit (MMHU) with usual care (acute geriatric medical wards and general (internal) medical wards). The authors conducted a cost-–utility analysis alongside the trial of an elderly acute care medical and mental health unit (NIHR TEAM trial; Goldberg et al., 2013) (n=600), an RCT conducted between 2010 and 2012 in the UK, and collected health care utility data using the EQ-5D-3L with societal weights. Primary outcome measures were QALYs and costs over 90 days. For further details, please see the economic evidence profile in Appendix M.
Service-use data included health and social care costs. Rates of resource use were taken from electronic administrative records systems used to record patient care and were costed using standard reference costs. Data were collected for 3 months post-hospital admission and 1 year pre-admission. The mean results are presented in Table 39.
Table 39
Base-case cost–utility results – Tanajewski et al., 2015.
Over a period of 90 days, MMHUs resulted in monetary savings and an increased number of QALYs, making MMHUs a dominant strategy. Probabilistic analysis showed that there is a 58% probability of the MMHU being dominant, and a 94% probability of cost effectiveness, if QALYs are valued at £20,000 each. The probability of the MMHU being cost-saving with QALY loss (SW quadrant of the cost–utility plane) was 39%.
The authors concluded that the specialist unit for people with delirium and dementia did not demonstrate convincing benefits in health status over usual hospital care, as no significant effect on QALY gain was observed. However, the results did show a trend towards cost savings and a high probability of cost effectiveness from a combined health and social care perspective, when usual criteria were applied.
8.1.4. Evidence statements
8.1.4.1. Nurse-led mental health liaison service versus usual care
Very low- to low-quality evidence from an RCT containing 153 participants could not differentiate levels of depressive symptoms (Geriatric Depression Scale), cognition (MMSE), general health (Health of Nations Outcome Scale), length of stay, the number of psychotropic medications prescribed at discharge, number readmitted to hospital and number of deaths in hospital between hospitalised people living with dementia, cognitive impairment or depressive symptoms being cared for by a nurse-led mental health liaison service compared with usual care.
8.1.4.2. Family-centred function focused care versus usual care
Very-low to low-quality evidence from 1 non-randomised controlled trial containing 86 participants found improved levels of activities of daily living (Barthel Index) and walking performance and reduced delirium incidence and delirium severity in hospitalised people living with dementia receiving family-centred function focused care compared with usual care, but could not differentiate length of stay, number of hospital readmissions, utilisation of post-acute rehabilitation at discharge, gait and balance (Tinetti Scale) or carer related outcomes.
8.1.4.3. Proactive case finding with palliative care service versus usual care
Very-low to low-quality evidence from 1 cohort study conducted in the USA containing 52 participants found reduced length of stay in hospital and ICU and reduced levels of ICU workload after DNR rules were established in people in hospitalised people living with dementia who had been proactively identified in liaison between ICU staff and the palliative care service versus usual care, but could not differentiate levels of mortality, length of time from admission until do not resuscitate goals were established, length of stay from establishment of do not resuscitate goals until discharge or ICU workload before DNR rules were established.
8.1.4.4. Specialist medical and mental health unit versus usual care
Very low- to moderate-quality evidence from 1 randomised controlled trial containing 600 participants could not differentiate cognition (MMSE), activities of daily living (Barthel Index), quality of life (DEMQOL self-report, DEMQOL proxy, EQ5D self-report, EQ5D proxy), general health measures (London Handicap Scale), number returning home from hospital within 90 days, overall mortality, readmissions or carer strain (Carer Strain Index) between hospitalised people living with dementia and/or delirium receiving care at a specialist medical and mental health unit versus usual care.
8.1.4.5. Follow-up individualised care plan versus usual care
Very low-quality evidence from 1 observational study containing 390 participants could not differentiate early ER rehospitalisation rates at discharge and after 3 months or early rehospitalisation rates in any ward at discharge and after 3 months in hospitalised people living with dementia receiving an individualised follow-up care plan versus usual care.
8.1.4.6. Health economic evidence
One directly applicable trial-based cost–utility analysis with minor limitations found that, compared with usual care, a dedicated medical and mental health unit resulted in cost savings of £149 per person and were associated with a small gain in QALYs of 0.001, rendering the strategy dominant. Probabilistic analysis showed a 58% probability of the dedicated unit being dominant and a 94% probability of cost effectiveness, when QALYs were valued at £20,000 each.
8.1.5. Evidence to recommendations
| Relative value of different outcomes | The committee recognised the relevance of all studies included in the evidence base, although they agreed, given the inclusion of an economic evaluation alongside the study, that the NIHR TEAM trial was the most relevant. They also agreed that the outcome measures used in this study were reasonable, and would be expected to capture any major differences found between the two groups. |
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| Trade-off between benefits and harms | The committee agreed that none of the interventions tested showed consistent evidence of benefits for either patients or carers, and therefore it was not appropriate to make any specific recommendations based on these trials. Although the committee agreed the NIHR funded TEAM trial (Goldberg, 2013) had demonstrated an appropriate model of care within a UK based hospital, they acknowledged there would be practical considerations in service delivery if this model was applied at a nationwide level. In particular, the committee recognised this model would be difficult to roll out nationally, as it would require a major reorganisation of staff in many UK hospitals. For this reason, the committee agreed there were not compelling clinical reasons to write a recommendation in support of this service delivery model. The committee agreed that, despite the lack of evidence found for specific interventions to improve hospital care for people living with dementia, there were nonetheless specific issues people with dementia faced in hospital. In particular, they agreed it was often not appropriate for people living with dementia to be treated on general hospital wards, and felt that a geriatric ward was usually a more appropriate location. Whilst these wards are not dementia specific, a high enough proportion of people passing through them are likely to have dementia (simply based on the underlying prevalence in the population) and therefore the staff are likely to be better trained and more experienced with people living with dementia than those on a general hospital ward. The committee also agreed that because the hospital population fluctuates, there are times when there will be a higher proportion of people living with dementia than at other times. Therefore, it would not be viable for the NHS to arrange units for older aged care into separate units specifically for people who are living with dementia and those who do not have dementia. The presence of some such units, but without the capacity to accept all people with dementia, risked creating a culture of inequity, whereby patients unable to access a specialist unit would potentially be treated as “being in the wrong place”, and therefore be likely to get sub-optimal care. The committee agreed the correct approach was rather to take elements of best care found in specialist units and apply these to all geriatric units, thereby raising the overall standard of care. |
| Consideration of health benefits and resource use | The committee acknowledged that TEAM trial did not find any significant or clinically meaningful differences in health outcomes between the intervention (MMHU - medical and mental health unit) and control group (acute geriatric and general medical wards) and therefore the economic evaluation (Tanajewski 2015) shifted the focus onto how savings were made with the MMHU intervention compared with control group (usual care). The committee expressed concern about the level of breakdown of costs provided in the paper as it was not clear where the cost savings for MMHU had come from, and the committee agreed it did not seem likely that such savings would be achieved in practice from what is a more staff-intensive model of care. The committee agreed the only way such savings would be possible in such a model would be either if the extra permanent staffing led to substantial reductions in spending on agency/temporary staff, or if increased staff knowledge led to a reduction in inappropriate interventions (e.g. unnecessary investigations). In the absence of sufficient detail in the paper to address these issues, the committee agreed that it would not be appropriate to make a recommendation solely based on evidence of cost saving that is unlikely to be achievable in practice. |
| Quality of evidence | The committee did not have any real concerns about the overall quality of the evidence they had seen. Although the results of the TEAM trial (Goldberg, 2013) demonstrated non-significant outcomes and were unable to differentiate outcomes when looking at care provided by a specialised service unit compared with usual care, the committee acknowledged it was a well-controlled trial, which had included a substantial sample of 600 individuals. The committee recognised there were differences in care between the populations reported in the US papers and populations that are cared for in the UK. This was particularly relevant to interpretation of the service delivery model reported in Campbell (2004). The patient population described within the Intensive Care Unit would have been very different to patient populations in an ICU within a UK setting. For this reason the committee were cautious about highlighting that model of service organisation. The committee acknowledged there was a mixed population of people included in two papers (Goldberg 2013; and Baldwin 2004) where people with delirium (Goldberg) and depression (Baldwin) were included alongside people living with dementia. The committee agreed these would not have had a negative influence upon interpretation of results because in practice the structural organisation of in-patient care for people living with delirium and dementia were likely to be similar. The committee did agree, however, that people living with dementia were at substantially increased risk of delirium when in hospital, and therefore it was appropriate to cross-refer to the sections of the delirium guideline on interventions to both prevent and treat delirium. |
| Other considerations | The committee noted there were other forms of evidence, and although these did not directly fulfil the inclusion criteria as defined in the review protocol for this question, they may provide further insight into the relevance of certain models of care. In particular, the committee highlighted the qualitative evidence that was conducted alongside the TEAM trial to provide insights into experiences of those involved in that model of care. The committee also recognised that Rapid Assessment, Interface and Discharge protocols are applied in current practice for more general older aged populations. The committee also highlighted there are other established national standards set out for healthcare practitioners to follow, in particular advice from the Royal College of Psychiatrists for managing older people in acute hospital settings. |
- Inpatient care - DementiaInpatient care - Dementia
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