NIHR Signal A coping programme moderately reduces depression and anxiety in carers of people with dementia

Published on 28 October 2015

This NIHR-funded trial found that a programme to support carers of people with dementia was moderately effective in reducing carers’ depression and anxiety scores for up to two years. It was also cost-effective. The programme consisted of eight sessions delivered by psychology graduates, covering topics such as managing difficult behaviour, accessing support and planning for the future. One in three people over 65 develop dementia and family are often the primary caregivers. The findings of this trial support NICE recommendations that the psychological burden upon carers is assessed and that they are given support.

Share your views on the research.

Why was this study needed?

A third of people aged over 65 will develop dementia. Families provide the majority of care, with around 670,000 family members acting as primary carer. Caring for a family member with dementia is emotionally and physically demanding, with 40% of carers experiencing depression or anxiety. Respite care may be available through local social services and private care agencies to enable carers to have time away from their caring responsibilities. However, provision for respite care is limited, so it is necessary to find other ways to support individuals with the day-to-day stresses of caring responsibilities. The NIHR funded this trial to find out if a psychological intervention carefully specified in a manual and delivered to family carers by trained psychologists would reduce their depression and anxiety, and would be cost-effective to roll-out across the NHS.

What did this study do?

This trial randomised 260 carers to receive either the START coping strategy programme or treatment as usual. Treatment as usual was expected to follow relevant NICE guideline recommendations. START comprised eight sessions delivered by psychology graduates according to a manual, which might have been an expensive way to deliver the intervention: the first involved learning about dementia and carer stress, sessions 2-5 covered managing difficult behaviour and accessing support, session 6 looked at future planning, session 7 identified pleasant activities, and the final session covered how to maintain the skills learned (see the Definitions tab for more information). There were more drop-outs in the treatment as usual group (21 people, 24%) than in the START group (12 people, 7%). Reasons, when given, for withdrawing included: not being allocated to the intervention, not liking the intervention, carer was ill or died, or the person being cared for had died.

What did it find?

  • The START intervention reduced carers’ anxiety and depression in both the short (8 months) and long term (12 and 24 months).
  • By eight months, START had reduced scores on the 42-point Hospital Anxiety and Depression Scale (HADS-T) from 13.5 at baseline to 12.9. Those receiving usual treatment had a small increase in score from 14.8 to 14.9. By 12 months, scores in the START group were further reduced to 12.5, but had risen to 13.6 at 24 months, slightly above the baseline score. In the usual treatment group scores were 14.6 at 12 months but had risen to 15.5 by 24 months.
  • Overall this meant that in the long term, START reduced scores by an average of 2.58 points (95% Confidence Interval -4.26 to -0.90), which was considered clinically significant, compared to the usual treatment group. Scores were adjusted to account for differences in the carers’ age, gender and psychological health at baseline.
  • START was cost-effective in the short and long term. Costs were slightly higher in the START group compared with treatment as usual but the difference was not significant. At 24 months calculations indicated that the cost of the intervention for each additional year that a person lived a good quality of life (QALY) was £11,200. There would be a 75% likelihood of the intervention being cost effective using the standard willingness to pay threshold of £30,000 per QALY.

What does current guidance say on this issue?

The 2006 NICE guideline on dementia recommends that carers should be assessed for psychological stress and offered support such as psychological therapy or peer support, alongside practical support such as telephone information lines and access to respite care.

2013 NICE commissioning guidance for dementia reiterates these responsibilities and states that the average cost of 6 sessions of cognitive behavioural therapy is £188.

What are the implications?

The trial reinforces NICE recommendations by providing evidence of the clinical and cost effectiveness of the START coping programme. START is likely to be cheaper overall than carer CBT. Although the cost per session (£36) was slightly higher than the cost for a session of cognitive behavioural therapy (£31 in the NICE costing report), this comparison does not take into account the number of sessions in the treatment programme or training or supervision costs that might be different between the  programmes. The START intervention was delivered by psychology graduates, to help control costs. The training requirements of those who would deliver this intervention, if implemented widely, will need consideration..

The authors believe that those included in the study were representative, and analyses were adjusted for important factors such as age, gender and baseline psychological health. However, the potential influence of some other factors remains unclear. For example, the effect of the intervention may vary depending on how long the person has been a carer for, or the severity of dementia or other physical illnesses in the family member being cared for.

Citation

Livingston G, Barber J, Rapaport P, et al. START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia. Health Technol Assess. 2014;18(61).

This project was funded by the National Institute for Health Research HTA programme (project number 08/14/06).

Bibliography

Alzheimer’s Society. Carers: looking after yourself. London: Alzheimer’s Society; 2015.

NHS Choices. Dementia guide: Looking after someone with dementia. London: NHS Choices; 2015.

NICE. Dementia costing report: Implementing NICE SCIE guidance in England. London: National Institute for Health and Care Excellence; 2006.

NICE. Support for commissioning dementia care. London: National Institute for Health and Care Excellence; 2013.

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

RCN. Dementia – supporting carers. London: Royal College of Nursing; 2015.

Stanford Medicine. Intervention manuals. Stanford (MA): Stanford Medicine; 2015.

Why was this study needed?

A third of people aged over 65 will develop dementia. Families provide the majority of care, with around 670,000 family members acting as primary carer. Caring for a family member with dementia is emotionally and physically demanding, with 40% of carers experiencing depression or anxiety. Respite care may be available through local social services and private care agencies to enable carers to have time away from their caring responsibilities. However, provision for respite care is limited, so it is necessary to find other ways to support individuals with the day-to-day stresses of caring responsibilities. The NIHR funded this trial to find out if a psychological intervention carefully specified in a manual and delivered to family carers by trained psychologists would reduce their depression and anxiety, and would be cost-effective to roll-out across the NHS.

What did this study do?

This trial randomised 260 carers to receive either the START coping strategy programme or treatment as usual. Treatment as usual was expected to follow relevant NICE guideline recommendations. START comprised eight sessions delivered by psychology graduates according to a manual, which might have been an expensive way to deliver the intervention: the first involved learning about dementia and carer stress, sessions 2-5 covered managing difficult behaviour and accessing support, session 6 looked at future planning, session 7 identified pleasant activities, and the final session covered how to maintain the skills learned (see the Definitions tab for more information). There were more drop-outs in the treatment as usual group (21 people, 24%) than in the START group (12 people, 7%). Reasons, when given, for withdrawing included: not being allocated to the intervention, not liking the intervention, carer was ill or died, or the person being cared for had died.

What did it find?

  • The START intervention reduced carers’ anxiety and depression in both the short (8 months) and long term (12 and 24 months).
  • By eight months, START had reduced scores on the 42-point Hospital Anxiety and Depression Scale (HADS-T) from 13.5 at baseline to 12.9. Those receiving usual treatment had a small increase in score from 14.8 to 14.9. By 12 months, scores in the START group were further reduced to 12.5, but had risen to 13.6 at 24 months, slightly above the baseline score. In the usual treatment group scores were 14.6 at 12 months but had risen to 15.5 by 24 months.
  • Overall this meant that in the long term, START reduced scores by an average of 2.58 points (95% Confidence Interval -4.26 to -0.90), which was considered clinically significant, compared to the usual treatment group. Scores were adjusted to account for differences in the carers’ age, gender and psychological health at baseline.
  • START was cost-effective in the short and long term. Costs were slightly higher in the START group compared with treatment as usual but the difference was not significant. At 24 months calculations indicated that the cost of the intervention for each additional year that a person lived a good quality of life (QALY) was £11,200. There would be a 75% likelihood of the intervention being cost effective using the standard willingness to pay threshold of £30,000 per QALY.

What does current guidance say on this issue?

The 2006 NICE guideline on dementia recommends that carers should be assessed for psychological stress and offered support such as psychological therapy or peer support, alongside practical support such as telephone information lines and access to respite care.

2013 NICE commissioning guidance for dementia reiterates these responsibilities and states that the average cost of 6 sessions of cognitive behavioural therapy is £188.

What are the implications?

The trial reinforces NICE recommendations by providing evidence of the clinical and cost effectiveness of the START coping programme. START is likely to be cheaper overall than carer CBT. Although the cost per session (£36) was slightly higher than the cost for a session of cognitive behavioural therapy (£31 in the NICE costing report), this comparison does not take into account the number of sessions in the treatment programme or training or supervision costs that might be different between the  programmes. The START intervention was delivered by psychology graduates, to help control costs. The training requirements of those who would deliver this intervention, if implemented widely, will need consideration..

The authors believe that those included in the study were representative, and analyses were adjusted for important factors such as age, gender and baseline psychological health. However, the potential influence of some other factors remains unclear. For example, the effect of the intervention may vary depending on how long the person has been a carer for, or the severity of dementia or other physical illnesses in the family member being cared for.

Citation

Livingston G, Barber J, Rapaport P, et al. START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia. Health Technol Assess. 2014;18(61).

This project was funded by the National Institute for Health Research HTA programme (project number 08/14/06).

Bibliography

Alzheimer’s Society. Carers: looking after yourself. London: Alzheimer’s Society; 2015.

NHS Choices. Dementia guide: Looking after someone with dementia. London: NHS Choices; 2015.

NICE. Dementia costing report: Implementing NICE SCIE guidance in England. London: National Institute for Health and Care Excellence; 2006.

NICE. Support for commissioning dementia care. London: National Institute for Health and Care Excellence; 2013.

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

RCN. Dementia – supporting carers. London: Royal College of Nursing; 2015.

Stanford Medicine. Intervention manuals. Stanford (MA): Stanford Medicine; 2015.

START (STrAtegies for RelaTives) study: a pragmatic randomised controlled trial to determine the clinical effectiveness and cost-effectiveness of a manual-based coping strategy programme in promoting the mental health of carers of people with dementia

Published on 10 October 2014

Livingston, G.,Barber, J.,Rapaport, P.,Knapp, M.,Griffin, M.,Romeo, R.,King, D.,Livingston, D.,Lewis-Holmes, E.,Mummery, C.,Walker, Z.,Hoe, J.,Cooper, C.

Health Technol Assess Volume 18 , 2014

BACKGROUND: Two-thirds of people with dementia live at home, receiving most care from family carers, about 40% of whom have clinically significant depression or anxiety. This impacts on the person with dementia, families and society, predicting care breakdown. There are currently no clinically effective and cost-effective NHS family carer interventions. OBJECTIVES: To assess the STrAtegies for RelaTives (START) intervention in the short (4 and 8 months) and long term (1 and 2 years) compared with treatment as usual (TAU). DESIGN: Randomised, parallel-group, superiority trial with blinded assessment recruiting participants 2:1 (intervention to TAU) to allow for therapist clustering. SETTING: Three UK mental health services and one neurological service. PARTICIPANTS: Family carers of people with dementia. INTERVENTION: Eight-session manual-based coping intervention delivered by supervised psychology graduates to individuals. MAIN OUTCOME MEASURES: Affective symptoms [Hospital Anxiety and Depression Scale-total (HADS-T)] and cost-effectiveness. Secondary measures: anxiety and depression symptoms and caseness, quality of life (QoL), abusive behaviour and long-term care home admission. RESULTS: Two hundred and sixty participants were randomised (173 intervention, 87 TAU). We used intention-to-treat analysis in the short term (152 intervention, 77 TAU) and in the long term (140 intervention, 69 TAU). In the short term, the intervention group had lower HADS-T [mean difference -1.80, 95% confidence interval (CI) -3.29 to -0.31; p=0.02] and higher quality-adjusted life-years (QALYs) (mean difference 0.03, 95% CI -0.01 to 0.08). Costs were no different between groups [mean pound 252 (95% CI - pound 28 to pound 565) for intervention group]. The cost-effectiveness acceptability curve showed a greater than 99% chance of being cost-effectiveness at a pound 30,000/QALY willingness-to-pay threshold and a high probability of cost-effectiveness based on the HADS-T score. Carers in the intervention group had less case-level depression [odds ratio (OR) 0.24, 95% CI 0.07 to 0.76], a trend towards reduced case-level anxiety (OR 0.30, 95% CI 0.08 to 1.05), lower Hospital Anxiety and Depression Scale-anxiety (HADS-A) (-0.91, 95% CI -1.76 to -0.07; p = 0.03) and Hospital Anxiety and Depression Scale-depression (HADS-D) (-0.91, 95% CI -1.71 to -0.10; p = 0.03) and higher Health Status Questionnaire (HSQ) QoL (mean difference 4.09, 95% CI 0.34 to 7.83). Group differences in abusive behaviour (OR 0.48, 95% CI 0.18 to 1.27) and the person with dementia's quality of life-Alzheimer's disease (QoL-AD) (mean increase 0.59, 95% CI -0.72 to 1.89) were not significant. In the long term, the intervention group had lower HADS-T (mean difference -2.58, 95% CI -4.26 to -0.90; p = 0.03) and higher QALYs (mean difference 0.03, 95% CI -0.01 to 0.06). Carers in the intervention group had less case-level depression (OR 0.14, 95% CI 0.04 to 0.53), a trend towards reduced case-level anxiety (OR 0.57, 95% CI 0.26 to 1.24), lower HADS-A (-1.16, 95% CI -2.15 to -0.18) and HADS-D (1.45, 95% CI -2.32 to -0.57), and higher HSQ (mean difference 7.47, 95% CI 2.87 to 12.08). Thirty-two (18.7%) people with dementia in the intervention group and 17 (20.2%) in TAU were admitted to a care home (hazard ratio 0.83, 95% CI 0.44 to 1.56; p = 0.56). There were no significant differences between groups in abusive behaviour (OR 0.83, 95% CI 0.36 to 1.94), the person with dementia's QoL-AD (0.17, 95% CI -1.37 to 1.70) or costs ( pound 336, 95% CI - pound 223 to pound 895) for intervention group. The probability that the intervention would be seen as cost-effective at pound 30,000/QALY threshold and cost-effectiveness on the HADS-T remained high. CONCLUSIONS: The START intervention was clinically effective and cost-effective in the short and longer term. The results are robust to the sensitivity analyses performed. Future work is needed to consider mechanism of action; the effects on people with dementia in clinical terms (cognition, neuropsychiatric symptoms, longer-term care home admission); and on health and social care costs. In addition, we will explore the effects of carer abusive behaviour on the care recipient's care home admission and if this then reduces abusive behaviour. We would also like to implement START and evaluate this implementation in clinical practice. TRIAL REGISTRATION: Current Controlled Trials ISCTRN70017938.

The eight sessions of the START manual-based coping strategy programme covered:

1. Learning about dementia, understanding the behaviours of the person they are caring for and carer stress, in particular how to recognise stress.

2-5. Discussion of difficult behaviours and how to manage them. Learning how to identify and change unhelpful thoughts, accessing support.

6. Planning for the future care needs of the person with dementia.

7. Identifying and planning pleasant activities that could be incorporated into the day.

8. How to maintain the skills learned over time, including an individual written plan of which techniques carers had found most effective and how they would use it in future.

Expert commentary

It’s not surprising to find another study that confirms the value of supporting family carers of people with dementia living in the community. A key question is whether this is something that requires clinical professional input (supervised psychology graduates) or whether models can be developed that can be delivered less expensively. The difficulty is balancing diffuse and superficial awareness-raising with specific targeted responses to carers’ needs. With the demographics and fiscal challenges of an ageing population and limited budgets, this is an important challenge.

Professor June Andrews, Professor in Dementia Services, University of Stirling

Author commentary

Of interest are the implementation costs of this service. We reconsidered START’s cost in relation to the CBT costs calculated by NICE. Adjusting for inflation (for comparability) increases CBT costs to £33 per session. Supervision accounted for 21% of START’s cost but was excluded from NICE‘s calculation. If added to NICE’s figure, the sessional costs exceed START’s £36 per session. However, the relevant comparison is between the costs of a full course of treatment. START’s eight sessions cost £232 per carer but CBT’s 12 sessions cost £525 per carer (without supervision costs, and would be another 20% higher if CBT was delivered only by clinical psychologists). START is considerably cheaper than carer CBT.

Professor Gill Livingston, Professor of Mental Health of Older People, University College London