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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 detailsImproper/poorly managed discharges from a service/environment (home, care home, hospital or respite care) can lead to increased stress and anxiety, both for people living with dementia and those caring for them. This uncertainty of transition can amplify negative feelings and cause unnecessary distress. Poor transition/planning between services can lead to increased likelihood of re-hospitalisation, delayed discharges, failed discharges, inappropriate placements and carer breakdown (Naylor 2008).
There is much documentation surrounding poor communication and planning when transitioning from one setting to another. Completing multi-disciplinary discharge meetings and ensuring all relevant parties are included in such decisions is vital in maintaining good communication and positive outcomes. Working in a collaborative manner increases positive outcomes by ensuring that everyone is aware of the support required and where this can best be achieved.
The Care Act 2014 discusses the responsibility of those working in adult care to ensure a person’s wellbeing when managing and supporting their care, respecting the individual’s wishes and the things that matter to them. The principal purpose is to ensure that everyone has support to meet their individual needs, rather than a one size fits all style of care.
When transitioning from one environment/setting to another the fundamental principles that apply are: planning, communication, collaboration and person centred support.
9.1. Managing the transition between different settings for people living with dementia
Review question
- What are the most effective ways of managing the transition between different settings (home, care home, hospital, and respite) for people living with dementia?
9.1.1. Introduction
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.
Table 40
Review summary: Managing the transition between different settings.
Randomised controlled trials and systematic review of randomised controlled trials were included if they compared different methods of managing transitions between care settings. Papers were excluded if they:
- were not in the English language
- were abstracts, conference proceedings and other unpublished studies.
- considered transitions into or out of inpatient hospital settings: these transitions are covered by another NICE guideline. (NG26: Transition between inpatient hospital settings and community or care home settings for adults with social care needs)
- considered transitions into or out of inpatient mental health settings: these transitions are covered by another NICE guideline. (NG53: Transition between inpatient mental health settings and community or care home settings)
- considered aspects of medicines-related communication systems when patients move between care settings: this is covered by another NICE guideline. (NG5: Medicines optimisation: the safe and effective use of medicines to enable the best possible outcomes)
9.1.2. Evidence review
A total of 3,451 unique citations were identified through a systematic search, of which 46 were retrieved for full-text appraisal. Four of these studies ultimately met the criteria for inclusion, with the remaining 42 studies excluded, with reasons for exclusion given in Appendix F. The included studies are summarised in Table 41. For the full evidence tables and full GRADE profiles please see Appendix E and Appendix G. References for the included studies are given in appendix I.
9.1.2.1. Description of included studies
Table 41
Summary of included studies.
9.1.3. Health economic evidence
Standard health economic filters with social care outcome terms were applied to the clinical search for this question, and a total of 2,974 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.
9.1.4. Evidence statements
9.1.4.1. Intervention for people living with dementia
Low-quality evidence from 1 RCT containing 32 people could not differentiate levels of agitation or spatial disorientation between people with Alzheimer’s disease relocated to a new nursing home facility intervention who were offered or not offered a reorientation intervention.
9.1.4.2. Interventions for carers
Very low to low-quality evidence from 1 RCT containing 406 people found lower levels of depressive symptoms in carers of people living with dementia transitioning to nursing homes who were offered comprehensive psychosocial support (New York University Carer Intervention) compared with those not offered support, but could not differentiate levels of carer burden.
Very low-quality evidence from 2 RCTs containing 82 people could not differentiate levels of carer burden, stress, depressive symptoms, satisfaction with the care facility or role satisfactions between carers of people living with dementia transitioning to nursing homes who were offered psychosocial interventions compared with those not offered interventions.
9.1.4.3. Health economic evidence
No health economic evidence was identified for this review question.
9.1.5. Evidence to recommendations
| Relative value of different outcomes | The committee agreed that, in order to recommend specific transfer interventions, data from quantitative studies (particularly randomised controlled trials) would be necessary. They agreed that data from qualitative studies alone would be unlikely to be sufficient to recommend potentially expensive interventions The committee also discussed the existing NICE guidelines on transfers between different settings, to assess their applicability for people living with dementia. |
|---|---|
| Trade-off between benefits and harms | The committee agreed that the following NICE guidelines on transfer are relevant to this guideline: Transition between inpatient mental health settings and community or care home settings (NG53), Transition between inpatient hospital settings and community or care home settings for adults with social care needs (NG27) and the recommendations specifically on transfer in section 1.2 of Medicines optimisation: the safe and effective use of medicines to enable the best possible outcomes (NG5). The committee therefore agreed that it would be appropriate to cross-refer to these pieces of guidance. The reason why other sections of NG5 were not referred to in this section is because they do not relate to the transfer of people. The committee agreed that all further recommendations should then focus on areas of transfer particularly relevant to people living with dementia, over and above standard transfers. The main distinct feature of people who live with dementia were identified as being the difficulty in ensuring that needs and wishes (including any Do Not Attempt Resuscitation (DNAR) documentation) are reviewed. In the experience of the committee, this is very important information that is commonly missing or not understood. For example, when a person living with dementia is transferred from one environment to another, staff are often unsure as to whether a pre-existing DNAR form is still relevant because potentially the person’s needs or wishes have changed. The committee wanted the phrase “needs and wishes” to be included, rather than refer to further specific documents. The aim of this is to get staff to think about what the needs and wishes of people are and to enable life-story documentation to be reviewed. In addition, there are already separate recommendations on what information should be documented in the palliative care and barriers and facilitators to involvement in decision-making sections of this guideline. The committee agreed it was important to include the phrase “after any transitions” because this is when information is reviewed by the new staff taking care of the person. The committee therefore made the recommendation that after any transition, to ensure that the person’s needs and wishes (including any DNAR documentation) are reviewed. The committee also agreed that the same principles underlying good practice for transfers to and from inpatient settings would also be applicable for transfers within the community, and therefore agreed it would be appropriate to make recommendations that these principles also be applied in the community setting. Whilst no specific evidence was identified for community transitions, the committee agreed that the evidence identified for inpatient transfers that led to the development of recommendations for those guidelines could reasonably be extrapolated to the community setting as well. |
| Consideration of health benefits and resource use | The committee agreed that the following additional recommendation should incur no additional cost. This is because this recommendation should be current standard practice, and the problems caused by information not being appropriately shared are likely to have a higher resource burden than the cost of ensuring appropriate transfer of information. |
| Quality of evidence | The committee agreed that none of the RCTs on specific transfer interventions provided strong enough evidence to make specific additional recommendations, over and above those in the other NICE guidelines on transitions between care settings. |
| Other considerations | The committee agreed that future research should be done on the questions of appropriately managing transitions for people living with dementia, as it is an important issue for service providers that it not currently addressed in the research literature. The committee advised that future RCTs should involve people living with dementia and compare a structured transfer plan to standard care. Examples of useful outcomes are: quality of life measures, narrative opinions, costs and adverse events. |
9.1.6. Recommendations
- 57.
For guidance on managing transition between care settings for people living with dementia, see:
- the NICE guideline on transition between inpatient mental health settings and community or care home settings
- section 1.2 of the NICE guideline on medicines optimisation.
Follow the principles in these guidelines for transitions between other settings (for example from home to a care home or respite care).
- 58.
Review the person’s needs and wishes (including any care and support plans and advance care and support plans) after every transition.
9.1.7. Research recommendations
- 7.
What is the effectiveness of structured transfer plans to ease the transition between different environments for people living with dementia and their carers?
For more details on the research recommendation made, and the rationale behind it, see appendix L.
- Care setting transitions - DementiaCare setting transitions - Dementia
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