Non-pharmacological interventions for agitation in dementia: systematic review of randomised controlled trials.

BACKGROUND: Agitation in dementia is common, persistent and distressing and can lead to care breakdown. Medication is often ineffective and harmful. AIMS: To systematically review randomised controlled trial evidence regarding non-pharmacological interventions. Method We reviewed 33 studies fitting predetermined criteria, assessed their validity and calculated standardised effect sizes (SES). RESULTS: Person-centred care, communication skills training and adapted dementia care mapping decreased symptomatic and severe agitation in care homes immediately (SES range 0.3-1.8) and for up to 6 months afterwards (SES range 0.2-2.2). Activities and music therapy by protocol (SES range 0.5-0.6) decreased overall agitation and sensory intervention decreased clinically significant agitation immediately. Aromatherapy and light therapy did not demonstrate efficacy. CONCLUSIONS: There are evidence-based strategies for care homes. Future interventions should focus on consistent and long-term implementation through staff training. Further research is needed for people living in their own homes.

Discrimination against people with a mental health diagnosis: qualitative analysis of reported experiences.

BACKGROUND: Discrimination towards people with a mental health diagnosis has public health implications. Recently, efforts have been made to tackle discrimination through campaigns and education. Understanding experiences of discrimination is vital in targeting efforts effectively. AIMS: The study aimed to explore experiences of reported discrimination described by service users in a national survey in England. METHOD: Structured telephone interviews were conducted with 537 mental health service users, randomly selected from five National Health Service Trusts in England. Interviews asked about experiences of discrimination in different life areas. Twenty-three interviews were audio-recorded and qualitatively analysed to develop a typology of discrimination experiences. RESULTS: We identified seven types: organisational decisions; mistreatment; social distancing; stereotyping; lack of understanding; dismissiveness; and over-protectiveness. CONCLUSIONS: Discrimination should be understood as occurring within social relationships and influenced by expectations of contact within these relationships. A better understanding of these processes can help target more effective messages in anti-discrimination campaigns.

Improving the end-of-life for people with dementia living in a care home: an intervention study.

BACKGROUND: One in three adults, most of whom are living in a care home at the time, dies with dementia. Their end-of-life is often in hospital, where they may experience uncomfortable interventions without known benefit and die rapidly with uncontrolled pain and comfort needs. This study aimed to improve end-of-life care for people with dementia in a care home by increasing the number and implementation of advanced care wishes. METHODS: We recruited staff, residents with dementia, and their relatives from a 120-bed nursing home in London, UK. The intervention was a ten-session manualized, interactive staff training program. We compared advance care wishes documentation and implementation, place of death for residents who died, and themes from staff and family carers' after-death interviews pre- and post-intervention. RESULTS: Post-intervention there were significant increases in documented advance care wishes arising from residents' and relatives' discussions with staff about end-of-life. These included do not resuscitate orders (16/22, 73% vs. 4/28, 14%; p < 0.001); and dying in the care homes as opposed to hospital (22/29, 76% vs. 14/30, 47%; p < 0.02). Bereaved relatives overall satisfaction increased from 7.5 (SD = 1.3) pre-intervention to 9.1 (SD = 2.4) post-intervention; t = 17.6, p = 0.06. Relatives reported increased consultation and satisfaction about decisions. Staff members were more confident about end-of-life planning and implementing advanced wishes. CONCLUSION: This small non-randomized study is the first end-of-life care in dementia intervention to report an increase in family satisfaction with a reduction in hospital deaths. This is promising but requires further evaluation in diverse care homes.

Care at the end of life for people with dementia living in a care home: a qualitative study of staff experience and attitudes.

OBJECTIVE: The aim of this study is to examine barriers and facilitators to care home staff delivering improved end-of-life care for people with dementia. METHOD: Individual qualitative interviews of 58 staff in a 120-bed nursing home where the staff and the residents' religion differed were carried out. Interviews continued until a maximum variation sample was achieved and theoretical saturation was reached. RESULTS: The staff felt warmly towards the residents and felt they could recognise when they were near death. Care staff, nurses and doctors did not see themselves as a team and communicated poorly with relatives about approaching death. The staff used opaque euphemisms and worried about being blamed. They were often unaware of or had concerns about the validity of advance care plans. They knew of the religious rituals around death but frequently misunderstood religious tradition. CONCLUSION: The staff require education and support about discussing and implementing plans around care at the end of life in dementia and about cultural issues around death to improve practice. This would enable the staff to implement advance care plans, knowing that they will be supported. Education would encompass communicating the complicated, unpredictable path of dementia near the time of death explicitly but sensitively, including recognising that people often do not hear difficult messages and are unable to take on large quantities of information at once. The staff need to know about the resident's religious and cultural ideas as well as ritual practice.

The effect of disclosure of mental illness by interviewers on reports of discrimination experienced by service users: a randomized study.

User involvement in research is widely valued, but evidence of its impact in quantitative research is lacking. We investigate whether survey responses are affected by interviewers' experience of mental health problems. We hypothesized that when the interviewer has experienced mental health problems, participants would be more likely to consent to participate, leave fewer items unanswered, report higher levels of discrimination and express greater satisfaction with the interview. The study was nested within a telephone survey of service users' experiences of discrimination. Participants were randomly assigned to three groups: peer disclosing, peer non-disclosing and non-peer interviewers, where 'peer interviewers' have personal experience of mental health problems. Analyses explored the impact on response rate, number of unanswered questions, reported discrimination and interview experience. No difference was found in prevalence of discrimination reported to interviewers. A significantly lower response rate was attained in the peer-disclosing group (5% compared to 6.5%, p = 0.005). Significantly fewer questions were left unanswered in the peer-disclosing group (Mean = 0.07 compared to 0.4, p = 0.004). Findings suggest that interviewers' experiences of mental health problems broadly do not impact on quantitative data collected in structured interviews about discrimination. Disclosure of peer status prior to consent may have affected recruitment.

Monetary costs of agitation in older adults with Alzheimer's disease in the UK: prospective cohort study.

OBJECTIVE: While nearly half of all people with Alzheimer's disease (AD) have agitation symptoms every month, little is known about the costs of agitation in AD. We calculated the monetary costs associated with agitation in older adults with AD in the UK from a National Health Service and personal social services perspective. DESIGN: Prospective cohort study. SETTING: London and the South East Region of the UK (LASER-AD study). PARTICIPANTS: 224 people with AD recruited between July 2002 and January 2003 and followed up for 54 months. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was health and social care costs, including accommodation costs and costs of contacts with health and social care services. Agitation was assessed using the Neuropsychiatric Inventory (NPI) agitation score. RESULTS: After adjustment, health and social care costs varied significantly by agitation, from £29,000 over a 1 year period with no agitation symptoms (NPI agitation score=0) to £57,000 at the most severe levels of agitation (NPI agitation score=12; p=0.01). The mean excess cost associated with agitation per person with AD was £4091 a year, accounting for 12% of the health and social care costs of AD in our data, and equating to £2 billion a year across all people with AD in the UK. CONCLUSIONS: Agitation in people with AD represents a substantial monetary burden over and above the costs associated with cognitive impairment.

A systematic review of the clinical effectiveness and cost-effectiveness of sensory, psychological and behavioural interventions for managing agitation in older adults with dementia.

BACKGROUND: Agitation is common, persistent and distressing in dementia and is linked with care breakdown. Psychotropic medication is often ineffective or harmful, but the evidence regarding non-pharmacological interventions is unclear. OBJECTIVES: We systematically reviewed and synthesised the evidence for clinical effectiveness and cost-effectiveness of non-pharmacological interventions for reducing agitation in dementia, considering dementia severity, the setting, the person with whom the intervention is implemented, whether the effects are immediate or longer term, and cost-effectiveness. DATA SOURCES: We searched twice using relevant search terms (9 August 2011 and 12 June 2012) in Web of Knowledge (incorporating MEDLINE); EMBASE; British Nursing Index; the Health Technology Assessment programme database; PsycINFO; NHS Evidence; System for Information on Grey Literature; The Stationery Office Official Documents website; The Stationery National Technical Information Service; Cumulative Index to Nursing and Allied Health Literature; and The Cochrane Library. We also searched Cochrane reviews of interventions for behaviour in dementia, included papers' references, and contacted authors about 'missed' studies. We included quantitative studies, evaluating non-pharmacological interventions for agitation in dementia, in all settings. REVIEW METHOD: We rated quality, prioritising higher-quality studies. We separated results by intervention type and agitation level. As we were unable to meta-analyse results except for light therapy, we present a qualitative evidence synthesis. In addition, we calculated standardised effect sizes (SESs) with available data, to compare heterogeneous interventions. In the health economic analysis, we reviewed economic studies, calculated the cost of effective interventions from the effectiveness review, calculated the incremental cost per unit improvement in agitation, used data from a cohort study to evaluate the relationship between health and social care costs and health-related quality of life (DEMQOL-Proxy-U scores) and developed a new cost-effectiveness model. RESULTS: We included 160 out of 1916 papers screened. Supervised person-centred care, communication skills (SES = -1.8 to -0.3) or modified dementia care mapping (DCM) with implementing plans (SES = -1.4 to -0.6) were all efficacious at reducing clinically significant agitation in care home residents, both immediately and up to 6 months afterwards. In care home residents, during interventions but not at follow-up, activities (SES = -0.8 to -0.6) and music therapy (SES = -0.8 to -0.5) by protocol reduced mean levels of agitation; sensory intervention (SES = -1.3 to -0.6) reduced mean and clinically significant symptoms. Advantages were not demonstrated with 'therapeutic touch' or individualised activity. Aromatherapy and light therapy did not show clinical effectiveness. Training family carers in behavioural or cognitive interventions did not decrease severe agitation. The few studies reporting activities of daily living or quality-of-life outcomes found no improvement, even when agitation had improved. We identified two health economic studies. Costs of interventions which significantly impacted on agitation were activities, £80-696; music therapy, £13-27; sensory interventions, £3-527; and training paid caregivers in person-centred care or communication skills with or without behavioural management training and DCM, £31-339. Among the 11 interventions that were evaluated using the Cohen-Mansfield Agitation Inventory (CMAI), the incremental cost per unit reduction in CMAI score ranged from £162 to £3480 for activities, £4 for music therapy, £24 to £143 for sensory interventions, and £6 to £62 for training paid caregivers in person-centred care or communication skills with or without behavioural management training and DCM. Health and social care costs ranged from around £7000 over 3 months in people without clinically significant agitation symptoms to around £15,000 at the most severe agitation levels. There is some evidence that DEMQOL-Proxy-U scores decline with Neuropsychiatric Inventory agitation scores. A multicomponent intervention in participants with mild to moderate dementia had a positive monetary net benefit and a 82.2% probability of being cost-effective at a maximum willingness to pay for a quality-adjusted life-year of £20,000 and a 83.18% probability at a value of £30,000. LIMITATIONS: Although there were some high-quality studies, there were only 33 reasonably sized (> 45 participants) randomised controlled trials, and lack of evidence means that we cannot comment on many interventions' effectiveness. There were no hospital studies and few studies in people's homes. More health economic data are needed. CONCLUSIONS: Person-centred care, communication skills and DCM (all with supervision), sensory therapy activities, and structured music therapies reduce agitation in care-home dementia residents. Future interventions should change care home culture through staff training and permanently implement evidence-based treatments and evaluate health economics. There is a need for further work on interventions for agitation in people with dementia living in their own homes. PROTOCOL REGISTRATION: The study was registered as PROSPERO no. CRD42011001370. FUNDING: The National Institute for Health Research Health Technology Assessment programme.

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.

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 £ 252 (95% CI -£ 28 to £ 565) for intervention group]. The cost-effectiveness acceptability curve showed a greater than 99% chance of being cost-effectiveness at a £ 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 (£ 336, 95% CI -£ 223 to £ 895) for intervention group. The probability that the intervention would be seen as cost-effective at £ 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.

England's time to change antistigma campaign: one-year outcomes of service user-rated experiences of discrimination.

OBJECTIVE: This study evaluated the progress at one year of England's Time to Change (TTC) program, launched in 2009, toward meeting its target to reduce mental health-related stigma and discrimination by 5%. METHODS: TTC comprises three national components: antistigma marketing campaign activities, mass physical exercise events (Time to Get Moving) to facilitate social contact between people with and without mental health problems, and an online resource on mental health and employment (Time to Challenge). Part of the TTC evaluation consists of an annual national phone survey of mental health service users. Participants (537 in 2008 and 1,047 in 2009) were current outpatient service users aged 18-65 registered with National Health Service community mental health teams that are selected annually to represent the range of socioeconomic deprivation. Telephone interviews were conducted with service users with the Discrimination and Stigma Scale (DISC) to document experienced discrimination and anticipated discrimination in the past 12 months. RESULTS: One or more experiences of discrimination were reported by 9-1% of participants in 2008 and 87% of participants in 2009 (p = .03). In 2009 significantly less discrimination was reported from a number of common sources, including family (reported by 53% in 2008 and 46% in 2009), friends (53% and 39%), finding employment (24% and 16%), and keeping employment (from 17% to 13%). Experiences of discrimination from mental health professionals did not change significantly (reported by about one-third of participants in both years). CONCLUSIONS: Results suggest positive progress toward meeting the program's targeted 5% reduction in discrimination.

Reducing stigma and discrimination: Candidate interventions.

This paper proposes that stigma in relation to people with mental illness can be understood as a combination of problems of knowledge (ignorance), attitudes (prejudice) and behaviour (discrimination). From a literature review, a series of candidate interventions are identified which may be effective in reducing stigmatisation and discrimination at the following levels: individuals with mental illness and their family members; the workplace; and local, national and international. The strongest evidence for effective interventions at present is for (i) direct social contact with people with mental illness at the individual level, and (ii) social marketing at the population level.