NIHR DC Discover

NIHR Signal Person-centred care improves quality of life for care home residents with dementia

Published on 20 March 2018

doi: 10.3310/signal-00574

A person-centred care intervention for people with dementia living in care homes improved their quality of life, reduced agitation and improved interactions with staff. It may also save costs compared with usual care. 

The WHELD intervention involves training staff in person-centred care, with a focus on improving social interactions and appropriate use of antipsychotic medications. An early study suggested it could halve antipsychotic use.

This larger-scale NIHR trial conducted across 69 UK nursing homes focused on exploring the effects on quality of life and other symptoms. WHELD gave small-scale, but important improvements. It didn’t reduce antipsychotic use, as this was low to start with, which is in line with policy to limit use.

It supports the feasibility of the intervention, but there is a need to understand which components are most effective and could be implemented on a wide scale with sustainable effects.

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Why was this study needed?

Over 400,000 older people currently live in care homes in the UK. This includes over a third of the UK population with dementia. Many people with dementia have complex care needs that can affect their quality of life. Antipsychotics are often prescribed to treat symptoms like agitation and aggression but often cause side effects.

As highlighted by the 2017 NIHR themed review Advancing Care, there is relatively poor understanding of interventions that may improve the experience for people living in care homes. There is increasing interest in whether non-drug, person-centred interventions may help.

The WHELD intervention is one such programme. A 2016 study found that it reduced antipsychotic use and mortality in care home residents with dementia. This larger trial aimed to gather more evidence and see whether it could help reduce agitation and improve quality of life among residents while saving costs.  

What did this study do?

This randomised controlled trial was conducted in 69 nursing homes in the UK where at least 60% of residents had dementia. Homes were assigned to receive the WHELD intervention or usual care for nine months.

WHELD involved training care staff to deliver person-centred activities and social interactions. These were tailored to the individual recognising their abilities and interests. WHELD also involved a system to trigger doctors to review the person’s antipsychotic medications.

The study involved a total 847 care home residents (71% women) who mostly had moderately-severe to severe dementia. A third of residents could not be followed up at nine months, mostly due to deaths. The proportion was slightly higher for WHELD intervention than usual care homes (36% vs 33%).

What did it find?

  • WHELD had a small effect on the main outcome of quality of life. This was measured by the caregiver-completed DEMQOL-Proxy questionnaire, which has a score range from 31 to 124 with higher scores reflecting better quality of life. People receiving WHELD achieved a 2.54 point improvement (95% confidence interval [CI] 0.81 to 4.28) compared with those receiving usual care.
  • It had small effects on reducing agitation according to the Cohen-Mansfield Agitation Inventory scale of 29 to 203 with higher scores indicating increased agitation (mean difference [MD] -4.27, 95% CI -7.39 to -1.15). It also reduced overall neuropsychiatric symptoms (MD -4.55, 95% CI -7.07 to -2.02 on the Neuropsychiatric Inventory-Nursing Home Version).
  • WHELD increased the number of positive interactions between staff and residents by 19.7% (95% CI 2.12 to 37.16) as measured by assessment of 62 nursing homes using the Quality of Interactions Scale.
  • WHELD made no difference to antipsychotic use, though this was low to start with. Antipsychotic medication was prescribed for 9% of all residents at start and end of the trial.
  • WHELD cost £8,627 per home to set up, with about half this cost spent in staff training and supervision from therapists. Then an additional cost of £130 per resident per month. However, total health and social care costs were £4,740 lower by nine months among residents in intervention homes compared with usual care. On this basis, there was thought to be a cost advantage of the WHELD intervention, though cost-effectiveness analysis was not performed.

What does current guidance say on this issue?

The NICE guideline on Dementia recommends that when organising care home placements for people with dementia, managers consider the building design, size, mix of residents and staff skills to ensure the environment is supportive and therapeutic.

For people with dementia with behaviour that challenges, NICE advises comprehensive assessment and development of individualised care plans. For agitation, they recommend non-drug interventions tailored to the person's preferences and abilities. Examples include music, aromatherapy and animal-assisted therapy. Drug treatment is only advised for people who are severely distressed or pose an immediate risk to themselves or others. NICE set out specific criteria for the use of antipsychotics, which includes treating for a time-limited period and reviewing regularly.

What are the implications?

This study supports the feasibility of implementing person-centred care in residential homes. It is essentially in line with guideline recommendations to restrict the use of antipsychotics and tailor non-drug interventions to the person's interests.

The findings have implications for health and social care managers and care home leaders. However, the intervention is multi-faceted, and there is a need to know which components are most effective. Delivery needs to be standardised if this is to be implemented on a wider scale across UK care homes and have a consistent effect, particularly with high rates of staff turnover.

Citation and Funding

Ballard C, Corbett A, Orrell M, et al. Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: A cluster-randomised controlled trial. PLoS Med. 2018;15(2): e1002500.

This study was supported by the National Institute for Health Research (NIHR) Biomedical Research Centre for Mental Health at South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry, King’s College London and the NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula.

Bibliography

NICE. Dementia: supporting people with dementia and their carers in health and social care. CG42. London: National Institute for Health and Care Excellence; 2006, updated 2016.

NICE. Dementia: support in health and social care. QS1. London: National Institute for Health and Care Excellence; 2010.

NICE. Low-dose antipsychotics in people with dementia. Key therapeutic topic. London: National Institute for Health and Care Excellence; 2015.

NIHR DC. Advancing Care - Research with care homes. Southampton: NIHR Dissemination Centre; 2017.

Why was this study needed?

Over 400,000 older people currently live in care homes in the UK. This includes over a third of the UK population with dementia. Many people with dementia have complex care needs that can affect their quality of life. Antipsychotics are often prescribed to treat symptoms like agitation and aggression but often cause side effects.

As highlighted by the 2017 NIHR themed review Advancing Care, there is relatively poor understanding of interventions that may improve the experience for people living in care homes. There is increasing interest in whether non-drug, person-centred interventions may help.

The WHELD intervention is one such programme. A 2016 study found that it reduced antipsychotic use and mortality in care home residents with dementia. This larger trial aimed to gather more evidence and see whether it could help reduce agitation and improve quality of life among residents while saving costs.  

What did this study do?

This randomised controlled trial was conducted in 69 nursing homes in the UK where at least 60% of residents had dementia. Homes were assigned to receive the WHELD intervention or usual care for nine months.

WHELD involved training care staff to deliver person-centred activities and social interactions. These were tailored to the individual recognising their abilities and interests. WHELD also involved a system to trigger doctors to review the person’s antipsychotic medications.

The study involved a total 847 care home residents (71% women) who mostly had moderately-severe to severe dementia. A third of residents could not be followed up at nine months, mostly due to deaths. The proportion was slightly higher for WHELD intervention than usual care homes (36% vs 33%).

What did it find?

  • WHELD had a small effect on the main outcome of quality of life. This was measured by the caregiver-completed DEMQOL-Proxy questionnaire, which has a score range from 31 to 124 with higher scores reflecting better quality of life. People receiving WHELD achieved a 2.54 point improvement (95% confidence interval [CI] 0.81 to 4.28) compared with those receiving usual care.
  • It had small effects on reducing agitation according to the Cohen-Mansfield Agitation Inventory scale of 29 to 203 with higher scores indicating increased agitation (mean difference [MD] -4.27, 95% CI -7.39 to -1.15). It also reduced overall neuropsychiatric symptoms (MD -4.55, 95% CI -7.07 to -2.02 on the Neuropsychiatric Inventory-Nursing Home Version).
  • WHELD increased the number of positive interactions between staff and residents by 19.7% (95% CI 2.12 to 37.16) as measured by assessment of 62 nursing homes using the Quality of Interactions Scale.
  • WHELD made no difference to antipsychotic use, though this was low to start with. Antipsychotic medication was prescribed for 9% of all residents at start and end of the trial.
  • WHELD cost £8,627 per home to set up, with about half this cost spent in staff training and supervision from therapists. Then an additional cost of £130 per resident per month. However, total health and social care costs were £4,740 lower by nine months among residents in intervention homes compared with usual care. On this basis, there was thought to be a cost advantage of the WHELD intervention, though cost-effectiveness analysis was not performed.

What does current guidance say on this issue?

The NICE guideline on Dementia recommends that when organising care home placements for people with dementia, managers consider the building design, size, mix of residents and staff skills to ensure the environment is supportive and therapeutic.

For people with dementia with behaviour that challenges, NICE advises comprehensive assessment and development of individualised care plans. For agitation, they recommend non-drug interventions tailored to the person's preferences and abilities. Examples include music, aromatherapy and animal-assisted therapy. Drug treatment is only advised for people who are severely distressed or pose an immediate risk to themselves or others. NICE set out specific criteria for the use of antipsychotics, which includes treating for a time-limited period and reviewing regularly.

What are the implications?

This study supports the feasibility of implementing person-centred care in residential homes. It is essentially in line with guideline recommendations to restrict the use of antipsychotics and tailor non-drug interventions to the person's interests.

The findings have implications for health and social care managers and care home leaders. However, the intervention is multi-faceted, and there is a need to know which components are most effective. Delivery needs to be standardised if this is to be implemented on a wider scale across UK care homes and have a consistent effect, particularly with high rates of staff turnover.

Citation and Funding

Ballard C, Corbett A, Orrell M, et al. Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: A cluster-randomised controlled trial. PLoS Med. 2018;15(2): e1002500.

This study was supported by the National Institute for Health Research (NIHR) Biomedical Research Centre for Mental Health at South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry, King’s College London and the NIHR Collaboration for Leadership in Applied Health Research and Care South West Peninsula.

Bibliography

NICE. Dementia: supporting people with dementia and their carers in health and social care. CG42. London: National Institute for Health and Care Excellence; 2006, updated 2016.

NICE. Dementia: support in health and social care. QS1. London: National Institute for Health and Care Excellence; 2010.

NICE. Low-dose antipsychotics in people with dementia. Key therapeutic topic. London: National Institute for Health and Care Excellence; 2015.

NIHR DC. Advancing Care - Research with care homes. Southampton: NIHR Dissemination Centre; 2017.

Impact of person-centred care training and person-centred activities on quality of life, agitation, and antipsychotic use in people with dementia living in nursing homes: A cluster-randomised controlled trial

Published on 6 February 2018

Ballard C, Corbett A, Orrell M, Williams G, Moniz-Cook E, Romeo R, Woods B, Garrod L, Testad I, Woodward-Carlton B, Wenborn J, Knapp M, Fossey J

PLoS Medicine , 2018

Background Agitation is a common, challenging symptom affecting large numbers of people with dementia and impacting on quality of life (QoL). There is an urgent need for evidence-based, cost-effective psychosocial interventions to improve these outcomes, particularly in the absence of safe, effective pharmacological therapies. This study aimed to evaluate the efficacy of a person-centred care and psychosocial intervention incorporating an antipsychotic review, WHELD, on QoL, agitation, and antipsychotic use in people with dementia living in nursing homes, and to determine its cost. Methods and findings This was a randomised controlled cluster trial conducted between 1 January 2013 and 30 September 2015 that compared the WHELD intervention with treatment as usual (TAU) in people with dementia living in 69 UK nursing homes, using an intention to treat analysis. All nursing homes allocated to the intervention received staff training in person-centred care and social interaction and education regarding antipsychotic medications (antipsychotic review), followed by ongoing delivery through a care staff champion model. The primary outcome measure was QoL (DEMQOL-Proxy). Secondary outcomes were agitation (Cohen-Mansfield Agitation Inventory [CMAI]), neuropsychiatric symptoms (Neuropsychiatric Inventory–Nursing Home Version [NPI-NH]), antipsychotic use, global deterioration (Clinical Dementia Rating), mood (Cornell Scale for Depression in Dementia), unmet needs (Camberwell Assessment of Need for the Elderly), mortality, quality of interactions (Quality of Interactions Scale [QUIS]), pain (Abbey Pain Scale), and cost. Costs were calculated using cost function figures compared with usual costs. In all, 847 people were randomised to WHELD or TAU, of whom 553 completed the 9-month randomised controlled trial. The intervention conferred a statistically significant improvement in QoL (DEMQOL-Proxy Z score 2.82, p = 0.0042; mean difference 2.54, SEM 0.88; 95% CI 0.81, 4.28; Cohen’s D effect size 0.24). There were also statistically significant benefits in agitation (CMAI Z score 2.68, p = 0.0076; mean difference 4.27, SEM 1.59; 95% CI −7.39, −1.15; Cohen’s D 0.23) and overall neuropsychiatric symptoms (NPI-NH Z score 3.52, p < 0.001; mean difference 4.55, SEM 1.28; 95% CI −7.07,−2.02; Cohen’s D 0.30). Benefits were greatest in people with moderately severe dementia. There was a statistically significant benefit in positive care interactions as measured by QUIS (19.7% increase, SEM 8.94; 95% CI 2.12, 37.16, p = 0.03; Cohen’s D 0.55). There were no statistically significant differences between WHELD and TAU for the other outcomes. A sensitivity analysis using a pre-specified imputation model confirmed statistically significant benefits in DEMQOL-Proxy, CMAI, and NPI-NH outcomes with the WHELD intervention. Antipsychotic drug use was at a low stable level in both treatment groups, and the intervention did not reduce use. The WHELD intervention reduced cost compared to TAU, and the benefits achieved were therefore associated with a cost saving. The main limitation was that antipsychotic review was based on augmenting processes within care homes to trigger medical review and did not in this study involve proactive primary care education. An additional limitation was the inherent challenge of assessing QoL in this patient group. Conclusions These findings suggest that the WHELD intervention confers benefits in terms of QoL, agitation, and neuropsychiatric symptoms, albeit with relatively small effect sizes, as well as cost saving in a model that can readily be implemented in nursing homes. Future work should consider how to facilitate sustainability of the intervention in this setting.

Expert commentary

This large study shows that training staff in nursing homes to deliver a personal approach to people with dementia is worthwhile and cost-effective. The improvements in quality of life and reduced agitation are real, albeit modest. It is a positive beacon in a context where there is otherwise much negativity.

The findings should be considered by care providers and commissioners. Furthermore, it is possible that the principles could be applied to similar people living at home and might reduce the need for nursing home care. But this is a subject for another trial.

Gordon Wilcock, Emeritus Professor of Geratology, Honorary Senior Clinical Research Fellow, University of Oxford