Background: There exists no instrument specifically designed to measure comprehensively the needs of older people with mental disorders.Aim: To develop such an instrument which would take account of patients', staff and carers' views on needs.Method: Following an extensive development process, the assessment instrument was subjected to a test–retest and interrater reliability study, while aspects of validity were addressed both during development and with data provided by sites in the UK, Sweden and the USA.Results: The Camberwell Assessment of Need for the Elderly (CANE) comprises 24 items (plus two items for carer needs), and records staff, carer and patient views. It has good content, construct and consensual validity. It also demonstrates appropriate criterion validity. Reliability is generally very high: κ > 0.85 for all staff ratings of interrater reliability. Correlations of interrater and test–retest reliability of total numbers of needs identified by staff were 0.99 and 0.93, respectively.Conclusions: The psychometric properties of the CANE seem to be highly acceptable. It was easily used by a wide range of professionals without formal training.

Background: Many people with dementia live in residential homes, but little is known about their quality of life.Aims: To compare the views of residents with dementia with the views of staff as to their quality of life, and to look at factors associated with these ratings.Method: The Quality of Life in Alzheimer's Disease (QoL-AD) scale was used to rate residents' and staff's perceptions of the quality of life of 238 residents of 24 residential homes in the UK.Results: There were 119 QoL-AD scales completed by both residents and staff. For the residents, high QoL-AD scores strongly correlated with lower scores for depression (ρ=–0.53, P < 0.0001) and anxiety (ρ= –0.50, P < 0.001). In contrast, better quality of life as rated by staff correlated most strongly with increased dependency (ρ=–0.53, P < 0.001) and behaviour problems (ρ=–0.40, P < 0.001).Conclusions: The QoL-AD could be used as an effective measure of the quality of life of people with dementia in residential homes. Whereas mood was the main predictor of residents' own assessment of their quality of life, staff ratings were strongly linked with dependency. Staff should be aware that mood rather than level of dependency has agreater impacton residents' quality of life.

Objective To assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia. Design Randomised, parallel group, superiority trial. Setting Three mental health community services and one neurological outpatient dementia service in London and Essex, UK. Participants 260 carers of family members with dementia. Intervention A manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers’ stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs. Main outcome measures Affective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer’s disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale). Results 260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means −1.80 points (95% confidence interval −3.29 to −0.31; P=0.02) and absolute difference in means −2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there was a non-significant trend towards reduced case level anxiety (0.30, 0.08 to 1.05). Carers’ quality of life was higher in the intervention group (difference in means 4.09, 95% confidence interval 0.34 to 7.83) but not for the recipient of care (difference in means 0.59, −0.72 to 1.89). Carers in the intervention group reported less abusive behaviour towards the recipient of care compared with those in the treatment as usual group (odds ratio 0.47, 95% confidence interval 0.18 to 1.23), although this was not significant. Conclusions A manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia. The carers’ quality of life also improved. Trial registration Current Controlled Trials ISCTRN70017938.

Background: health-related quality of life (HR-QOL) scales are particularly important in older people as global outcome measures for interventions. It is known that people with mild to moderate dementia can provide valid assessments of their own QOL, but it is unclear whether these instruments are useful in those with severe dementia. Objective: we examined the usefulness of the QOL scale in Alzheimer’s disease (QOL-AD) in people with severe dementia by considering the ability of older people with a Mini-Mental State Examination (MMSE) score of <12 and their caregivers to complete this scale, as well as its construct validity and internal consistency. Methods: data were collected from people with Alzheimer’s disease and their caregivers using a range of instruments measuring cognition, mood, behaviour, QOL and functional ability. Results: of 79 participants and their caregivers, 41 (52%) could complete the QOL-AD. Cognition and functional abilities were significantly higher in the completers than in the non-completers (P < 0.001). The QOL-AD showed internal consistency and construct validity as it correlated with ability to look after self, fewer limitations due to physical health, positive mood status and low levels of apathy. Conclusions: there is evidence for the validity and reliability of the QOL-AD in people with MMSE scores of 3–11, as well as the practicality of administering the scale in this population. The scale is unlikely to generate useful information for people with MMSE scores of <3. QOL does not decrease as cognition worsens. This throws into question most people’s assumption that decreasing cognition worsens QOL. We consider that it may be important to inform the public of this, as living wills are used increasingly in our culture.

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.Funding: The National Institute for Health Research Health Technology Assessment programme.

Background: There is good evidence for the benefits of short-term cognitive stimulation therapy for dementia but little is known about possible long-term effects.Aims: To evaluate the effectiveness of maintenance cognitive stimulation therapy (CST) for people with dementia in a single-blind, pragmatic randomised controlled trial including a substudy with participants taking acetylcholinesterase inhibitors (AChEIs).Method: The participants were 236 people with dementia from 9 care homes and 9 community services. Prior to randomisation all participants received the 7-week, 14-session CST programme. The intervention group received the weekly maintenance CST group programme for 24 weeks. The control group received usual care. Primary outcomes were cognition and quality of life (clinical trial registration: ISRCTN26286067).Results: For the intervention group at the 6-month primary end-point there were significant benefits for self-rated quality of life (Quality of Life in Alzheimer's Disease (QoL-AD) P = 0.03). At 3 months there were improvements for proxy-rated quality of life (QoL-AD P = 0.01, Dementia Quality of Life scale (DEMQOL) P = 0.03) and activities of daily living (P = 0.04). The intervention subgroup taking AChEIs showed cognitive benefits (on the Mini-Mental State Examination) at 3 (P = 0.03) and 6 months (P = 0.03).Conclusions: Continuing CST improves quality of life; and improves cognition for those taking AChEIs.