NIHR Signal Case managers improve outcomes for people with dementia and their carers

Published on 24 April 2018

Using a case manager to coordinate health and social care improves the challenging behaviour of people with dementia and reduces the burden on caregivers. Quality of life of caregivers improves the most when case managers have a professional background in nursing.

This NIHR-funded review compared the effectiveness of standard community treatment and interventions with case managers overseeing the interventions for people living with dementia. It considered evidence from 14 trials in a number of countries, with different health systems and support. Care coordination is variable across the UK, but this is often not provided by a qualified professional, so they are not able to develop and update the care plan.

Though the review did not provide strong evidence of effectiveness regarding hospitalisation or death, it does highlight the benefits of having a care coordinator with a background in nursing for improving quality of life.

Share your views on the research.

Why was this study needed?

An estimated 850,000 people have dementia in the UK, at an average cost of £32,250 per person. Costs to UK society are £26.3 billion overall per year. The NHS picks up £4.3 billion of these, social care £10.3 (through public and private funds) and £11.6 billion is the value of the work of unpaid carers of people with dementia.

Dementia places a heavy burden on the person and their caregivers. So far, no ideal community-based care strategy has been identified for dementia. Case managers have previously been used to facilitate coordination, collaboration and communication. However, results on the benefits of this strategy have not been consistent. Care coordination of some kind is available in the UK, but this takes different forms. It may include dementia advisors through the memory assessment services or more enhanced case management through specialised services where available such as Admiral nurses (supporting families) and other forms of specialist dementia support. 

This systematic review and meta-analysis assessed the effectiveness of community-based case managers for coordinating interventions for people with dementia and their caregivers. It also aimed to identify any key elements that improved the quality of care.

What did this study do?

This systematic review of 14 randomised control trials compared community-based case managers with standard community care in 10,372 people diagnosed with dementia. The trials were conducted in the USA, China, Finland, the Netherlands, India and Canada. The duration of the trials ranged from four months to over two years.

The focus of the case manager included planning, facilitating and/or coordinating care through assessments and proactive follow-ups. Interventions varied and were not always well described.

All trials were rated as high or moderate quality. The main limitation was the variability across studies in the interventions and outcome measures.

What did it find?

  • Having a case manager improved patient behaviour by nine points on the neuropsychiatric inventory scale of 1 to 144 where higher scores indicate worse symptoms (mean difference [MD] -9.52, 95% confidence interval [CI] -18.05 to -1.00; four trials).
  • Case managers had a moderate effect on reducing caregiver burden (standardised mean difference [SMD] -0.54, 95% CI -1.01 to -0.07; five trials).
  • There was no difference in death rate or admission to hospital or an institution between people with a case manager and those receiving standard care.
  • In sub-group analyses, case managers with a nursing background were associated with improved quality of life of caregivers (SMD 0.94, 95% CI 0.63 to 1.25; two trials), while those with other backgrounds did not (SMD 0.03, 95% CI -0.32 to 0.39; two trials), p less than < 0.001 for the difference.
  • Interventions where case managers were unsupervised were less likely to lead to nursing home or residential care (OR 0.27, 95% CI 0.12 to 0.61; three trials) than those who were supervised (OR 0.96, 95% CI 0.47 to 1.95; three trials), p = 0.02 for the difference.

What does current guidance say on this issue?

The NICE guideline on dementia updated in 2016 recommends that care managers ensure the coordinated delivery of health and social care services for people with dementia. This should include a care plan with named health and/or social care staff with their roles and responsibilities. The care manager should review the care plan and adapt it to the changing needs of the person with dementia and their caregivers.

A new guideline on assessment, management and support for people living with dementia and caregivers is due to be published in June.

What are the implications?

This review supports the role of professional case managers by showing improvements in patient behaviour and caregiver burden. Though no difference was found for outcomes such as hospitalisation or death, enhancing the quality of life for the person with dementia and their caregiver is arguably as important.

Few key elements of successful care were identified, but this may have been hampered by the small number of available studies for each comparison.

However, it is clear that given the complex, challenging and changing care needs of people with dementia, assisting the carer in coordinating services reduces some of the burden.

Citation and Funding

Backhouse A, Ukoumunne OC, Richards DA, et al. The effectiveness of community-based coordinating interventions in dementia care: a meta-analysis and subgroup analysis of intervention components. BMC Health Serv Res. 2017;17(1):717.

This project was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula.

Bibliography

Alzheimer’s Disease International. World Alzheimer Report 2016: Improving healthcare for people living with dementia. London: Alzheimer’s Disease International; 2016.

Economist Intelligence Unit. Assessing the socioeconomic impact of Alzheimer’s disease in western Europe and Canada. London: Economist Intelligence Unit; 2017.

NICE. Dementia: supporting people with dementia and their carers in health and social care. CG42. London: National Institute for Health and Clinical Excellence; 2006.

NICE. Dementia - assessment, management and support for people living with dementia and their carers. GID-CGWAVE0792. London: National Institute for Health and Clinical Excellence; in development.

Why was this study needed?

An estimated 850,000 people have dementia in the UK, at an average cost of £32,250 per person. Costs to UK society are £26.3 billion overall per year. The NHS picks up £4.3 billion of these, social care £10.3 (through public and private funds) and £11.6 billion is the value of the work of unpaid carers of people with dementia.

Dementia places a heavy burden on the person and their caregivers. So far, no ideal community-based care strategy has been identified for dementia. Case managers have previously been used to facilitate coordination, collaboration and communication. However, results on the benefits of this strategy have not been consistent. Care coordination of some kind is available in the UK, but this takes different forms. It may include dementia advisors through the memory assessment services or more enhanced case management through specialised services where available such as Admiral nurses (supporting families) and other forms of specialist dementia support. 

This systematic review and meta-analysis assessed the effectiveness of community-based case managers for coordinating interventions for people with dementia and their caregivers. It also aimed to identify any key elements that improved the quality of care.

What did this study do?

This systematic review of 14 randomised control trials compared community-based case managers with standard community care in 10,372 people diagnosed with dementia. The trials were conducted in the USA, China, Finland, the Netherlands, India and Canada. The duration of the trials ranged from four months to over two years.

The focus of the case manager included planning, facilitating and/or coordinating care through assessments and proactive follow-ups. Interventions varied and were not always well described.

All trials were rated as high or moderate quality. The main limitation was the variability across studies in the interventions and outcome measures.

What did it find?

  • Having a case manager improved patient behaviour by nine points on the neuropsychiatric inventory scale of 1 to 144 where higher scores indicate worse symptoms (mean difference [MD] -9.52, 95% confidence interval [CI] -18.05 to -1.00; four trials).
  • Case managers had a moderate effect on reducing caregiver burden (standardised mean difference [SMD] -0.54, 95% CI -1.01 to -0.07; five trials).
  • There was no difference in death rate or admission to hospital or an institution between people with a case manager and those receiving standard care.
  • In sub-group analyses, case managers with a nursing background were associated with improved quality of life of caregivers (SMD 0.94, 95% CI 0.63 to 1.25; two trials), while those with other backgrounds did not (SMD 0.03, 95% CI -0.32 to 0.39; two trials), p less than < 0.001 for the difference.
  • Interventions where case managers were unsupervised were less likely to lead to nursing home or residential care (OR 0.27, 95% CI 0.12 to 0.61; three trials) than those who were supervised (OR 0.96, 95% CI 0.47 to 1.95; three trials), p = 0.02 for the difference.

What does current guidance say on this issue?

The NICE guideline on dementia updated in 2016 recommends that care managers ensure the coordinated delivery of health and social care services for people with dementia. This should include a care plan with named health and/or social care staff with their roles and responsibilities. The care manager should review the care plan and adapt it to the changing needs of the person with dementia and their caregivers.

A new guideline on assessment, management and support for people living with dementia and caregivers is due to be published in June.

What are the implications?

This review supports the role of professional case managers by showing improvements in patient behaviour and caregiver burden. Though no difference was found for outcomes such as hospitalisation or death, enhancing the quality of life for the person with dementia and their caregiver is arguably as important.

Few key elements of successful care were identified, but this may have been hampered by the small number of available studies for each comparison.

However, it is clear that given the complex, challenging and changing care needs of people with dementia, assisting the carer in coordinating services reduces some of the burden.

Citation and Funding

Backhouse A, Ukoumunne OC, Richards DA, et al. The effectiveness of community-based coordinating interventions in dementia care: a meta-analysis and subgroup analysis of intervention components. BMC Health Serv Res. 2017;17(1):717.

This project was funded by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula.

Bibliography

Alzheimer’s Disease International. World Alzheimer Report 2016: Improving healthcare for people living with dementia. London: Alzheimer’s Disease International; 2016.

Economist Intelligence Unit. Assessing the socioeconomic impact of Alzheimer’s disease in western Europe and Canada. London: Economist Intelligence Unit; 2017.

NICE. Dementia: supporting people with dementia and their carers in health and social care. CG42. London: National Institute for Health and Clinical Excellence; 2006.

NICE. Dementia - assessment, management and support for people living with dementia and their carers. GID-CGWAVE0792. London: National Institute for Health and Clinical Excellence; in development.

The effectiveness of community-based coordinating interventions in dementia care: a meta-analysis and subgroup analysis of intervention components

Published on 15 November 2017

Backhouse, A.,Ukoumunne, O. C.,Richards, D. A.,McCabe, R.,Watkins, R.,Dickens, C.

BMC Health Serv Res Volume 17 , 2017

BACKGROUND: Interventions aiming to coordinate services for the community-based dementia population vary in components, organisation and implementation. In this review we aimed to evaluate the effectiveness of community-based care coordinating interventions on health outcomes and investigate whether specific components of interventions influence their effects. METHODS: We searched four databases from inception to April 2017: Medline, The Cochrane Library, EMBASE and PsycINFO. This was aided by a search of four grey literature databases, and backward and forward citation tracking of included papers. Title and abstract screening was followed by a full text screen by two independent reviewers, and quality was assessed using the CASP appraisal tool. We then conducted meta-analyses and subgroup analyses. RESULTS: A total of 14 randomised controlled trials (RCTs) involving 10,372 participants were included in the review. Altogether we carried out 12 meta-analyses and 19 subgroup analyses. Meta-analyses found coordinating interventions showed a statistically significant improvement in both patient behaviour measured using the Neuropsychiatric Inventory (NPI) (mean difference (MD) = -9.5; 95% confidence interval (CI): -18.1 to -1.0; p = 0.03; number of studies (n) = 4; I2 = 88%) and caregiver burden (standardised mean difference (SMD) = -0.54; 95% CI: -1.01 to -0.07; p = 0.02; n = 5, I2 = 92%) compared to the control group. Subgroup analyses found interventions using a case manager with a nursing background showed a greater positive effect on caregiver quality of life than those that used case managers from other professional backgrounds (SMD = 0.94 versus 0.03, respectively; p < 0.001). Interventions that did not provide supervision for the case managers showed greater effectiveness for reducing the percentage of patients that are institutionalised compared to those that provided supervision (odds ratio (OR) = 0.27 versus 0.96 respectively; p = 0.02). There was little evidence of effects on other outcomes, or that other intervention components modify the intervention effects. CONCLUSION: Results show that coordinating interventions in dementia care has a positive impact on some outcomes, namely patient behaviour and caregiver burden, but the evidence is inconsistent and results were not strong enough to draw definitive conclusions on general effectiveness. With the rising prevalence of dementia, effective complex interventions will be necessary to provide high quality and effective care for patients, and facilitate collaboration of health, social and third sector services.

Expert commentary

Case management for people living with dementia is standard practice in many European countries, although not in the UK, where there has been more uncertainty about its effectiveness.

While the review reports no significant impact on outcomes such as mortality or hospital admissions it did find a reduction in neuropsychiatric symptoms (behaviours that challenge) in people with dementia and in caregiver burden. These are both important (and potentially linked) outcomes.

The review suggests that nurses may be particularly well placed to act as case managers for people with dementia, perhaps because they have the skills to perform the broad range of tasks associated with the role.

Frances Bunn, Professor in Health and Complex Conditions, University of Hertfordshire