Living positively with dementia: a systematic review and synthesis of the qualitative literature.

OBJECTIVE: Little is known about how and to what extent people with dementia live positively with their condition. This study aimed to review and carry out a synthesis of qualitative studies where accounts of the subjective experiences of people with dementia contained evidence of positive states, experiences or attributes. METHODS: A meta-synthesis was undertaken to generate an integrated and interpretive account of the ability of people with dementia to have positive experiences. A methodological quality assessment was undertaken to maximize the reliability and validity of this synthesis and to contextualize the findings with regard to methodological constraints and epistemological concepts. FINDINGS: Twenty-seven papers were included. Three super-ordinate themes relating to positive experiences and attributes were identified, each with varying and complementing sub-themes. The first super-ordinate theme related to the experience of engaging with life in ageing rather than explicitly to living with dementia. The second theme related to engaging with dementia itself and comprised the strengths that people can utilize in facing and fighting the condition. The third theme captured how people with dementia might transcend the condition and seek ways to maintain identity and even achieve personal growth. CONCLUSIONS: This review provides a first step towards understanding what conceptual domains might be important in defining positive outcomes for people who live with dementia. Highlighting the potential for people to have positive experiences in spite of or even because of their dementia has important implications for de-stigmatizing dementia and will enhance person-centred approaches to care.

Study of the use of antidepressants for depression in dementia: the HTA-SADD trial--a multicentre, randomised, double-blind, placebo-controlled trial of the clinical effectiveness and cost-effectiveness of sertraline and mirtazapine.

OBJECTIVE: Depression is common in dementia, causing considerable distress and other negative impacts. Treating it is a clinical priority, but the evidence base is sparse and equivocal. This trial aimed to determine clinical effectiveness of sertraline and mirtazapine in reducing depression 13 weeks post randomisation compared with placebo. DESIGN: Multicentre, parallel-group, double-blind placebo-controlled randomised controlled trial of the clinical effectiveness of sertraline and mirtazapine with 13- and 39-week follow-up. SETTING: Nine English old-age psychiatry services. PARTICIPANTS: A pragmatic trial. Eligibility: probable or possible Alzheimer's disease (AD), depression (4+ weeks) and Cornell Scale for Depression in Dementia (CSDD) score of 8+. EXCLUSIONS: clinically too critical (e.g. suicide risk); contraindication to medication; taking antidepressants; in another trial; and having no carer. INTERVENTIONS: (1) Sertraline; (2) mirtazapine; and (3) placebo, all with normal care. Target doses: 150 mg of sertraline or 45 mg of mirtazapine daily. OUTCOME: CSDD score. Randomisation: Allocated 1 : 1 : 1 through Trials Unit, independently of trial team. Stratified block randomisation by centre, with randomly varying block sizes; computer-generated randomisation. Blinding: Double blind: medication and placebo identical for each antidepressant. Referring clinicians, research workers, participants and pharmacies were blind. Statisticians blind until analyses completed. RESULTS: Numbers randomised: 326 participants randomised (111 placebo, 107 sertraline and 108 mirtazapine). OUTCOME: Differences in CSDD at 13 weeks from an adjusted linear-mixed model: mean difference (95% CI) placebo-sertraline 1.17 (-0.23 to 2.78; p = 0.102); placebo-mirtazapine 0.01 (-1.37 to 1.38; p = 0.991); and mirtazapine-sertraline 1.16 (-0.27 to 2.60; p = 0.112). HARMS: Placebo group had fewer adverse reactions (29/111, 26%) than sertraline (46/107, 43%) or mirtazapine (44/108, 41%; p = 0.017); 39-week mortality equal, five deaths in each group. CONCLUSIONS: This is a trial with negative findings but important clinical implications. The data suggest that the antidepressants tested, given with normal care, are not clinically effective (compared with placebo) for clinically significant depression in AD. This implies a need to change current practice of antidepressants being the first-line treatment of depression in AD. From the data generated we formulated the following recommendations for future work. (1) The secondary analyses presented here suggest that there would be value in carrying out a placebo-controlled trial of the clinical effectiveness and cost-effectiveness of mirtazapine in the management of Behavioural and Psychological Symptoms of Dementia. (2) A conclusion from this study is that it remains both ethical and essential for trials of new medication for depression in dementia to have a placebo arm. (3) Further research is required to evaluate the impact that treatments for depression in people with dementia can have on their carers not only in terms of any impacts on their quality of life, but also the time they spend care-giving. (4) There is a need for research into alternative biological and psychological therapies for depression in dementia. These could include evaluations of new classes of antidepressants (such as venlafaxine) or antidementia medication (e.g. cholinesterase inhibitors). (5) Research is needed to investigate the natural history of depression in dementia in the community when patients are not referred to secondary care services. (6) Further work is needed to investigate the cost modelling results in this rich data set, investigating carer burden and possible moderators to the treatment effects. (7) There is scope for reanalysis of the primary outcome in terms of carer and participant CSDD results.

REMCARE: reminiscence groups for people with dementia and their family caregivers - effectiveness and cost-effectiveness pragmatic multicentre randomised trial.

OBJECTIVES: The aim of the REMiniscence groups for people with dementia and their family CAREgivers (REMCARE) study was to assess the effectiveness and cost-effectiveness of joint reminiscence groups for people with dementia and their family caregivers as compared with usual care. DESIGN: A multicentre, pragmatic randomised controlled trial with two parallel arms - an intervention group and a usual-care control group - was carried out. A restricted dynamic method of randomisation was used with an overall allocation ratio of 1 : 1, restricted to ensure intervention groups of a viable size. Assessments, blind to treatment allocation, were carried out at baseline, 3 months and 10 months (primary end point). SETTING: Most participants were recruited through NHS Memory Clinics and Community Mental Health Teams for older people. Assessments were usually carried out in the person's home, and treatment groups were held in a variety of community settings. PARTICIPANTS: A total of 488 individuals (mean age 77.5 years) with mild to moderate dementia (meeting Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition criteria), who were initially living in the community, and who had a relative or other caregiver maintaining regular contact, who could act as an informant and was willing and able to participate in the intervention, were recruited to the study. Most carers were spouses (71%). A total of 350 dyads completed the study. INTERVENTIONS: The intervention consisted of joint reminiscence groups held weekly for 12 consecutive weeks, followed by monthly maintenance sessions for a further 7 months. The sessions followed a treatment manual, and were led by two trained facilitators in each centre, supported by a number of volunteers. Up to 12 dyads were invited to attend each group. MAIN OUTCOME MEASURES: The primary outcome measures were self-reported quality of life for the person with dementia and psychological distress for the carer [General Health Questionnaire-28 item version (GHQ-28)]. Secondary outcome measures included autobiographical memory and activities of daily living for the person with dementia, carer stress for the carer and mood, relationship quality and service use and costs for both parties. RESULTS: The intention-to-treat analysis identified no differences in outcome between the intervention and control conditions on primary or secondary outcomes [self-reported quality of life in Alzheimer's disease: mean difference 0.07, standard error (SE) 0.65; F = 0.48; p = 0.53]. Carers of people with dementia allocated to the reminiscence intervention reported a significant increase in anxiety on a subscale of the GHQ-28 at the 10-month end point (mean difference 1.25, SE 0.5; F = 8.28; p = 0.04). Compliance analyses suggested some benefits for people with dementia who attended more reminiscence sessions; however, carers attending more groups showed increased caregiving stress. Use of health- and social-care services was modest, with no significant difference in service use between conditions. Owing to negligible difference in quality-adjusted life-year gains (derived from European Quality of Life-5 Dimensions) between the conditions the planned full economic analysis was curtailed. CONCLUSIONS: This trial does not provide support for the effectiveness or cost-effectiveness of joint reminiscence groups for people with dementia and their carers. Although there may be some beneficial effects for people with dementia who attend sessions as planned, this must be viewed in the context of raised anxiety and stress in their carers. The reasons for these discrepant outcomes need to be explored further, and may necessitate reappraisal of the movement towards joint interventions. TRIAL REGISTRATION: Current Controlled Trials ISRCTN42430123. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 16, No. 48. See the HTA programme website for further project information.

Guidelines for psychosocial interventions in dementia care: a European survey and comparison.

OBJECTIVE: The effectiveness of psychosocial interventions in treating people with dementia and their carers is increasingly emphasised in the literature. Dementia guidelines should summarise the scientific evidence and best practice that is currently available, therefore, it should include recommendations for psychosocial interventions. The aims of our study were (1) to collate dementia guidelines from countries across Europe and to check whether they included sections about psychosocial interventions, and (2) to compare the methodological quality and the recommendations for specific psychosocial interventions in these guidelines. METHODS: The European dementia guidelines were inventoried. The methodological quality of the guideline sections for psychosocial interventions was assessed with the (AGREE) Appraisal of Guidelines Research and Evaluation instrument. The recommendations for specific psychosocial interventions were extracted from each of these guidelines and compared. RESULTS: Guidelines for psychosocial interventions were found in five of 12 countries. Guideline developers, methodological quality and appreciation of available evidence influenced the inclusion of psychosocial interventions in dementia guidelines from Germany, Italy, the Netherlands, Spain and the UK. The UK NICE SCIE guideline had the best methodological quality and included the most recommendations for psychosocial interventions. Physical activity and carer interventions were recommended the most across all guidelines. CONCLUSION: The inclusion of psychosocial interventions in dementia guidelines is limited across Europe. High-quality guidelines that include psychosocial interventions and are kept up to date with the emerging evidence are needed. Throughout Europe, special attention to the implementation of evidence-based psychosocial care is needed in the next few years.

The primary care diagnosis of dementia in Europe: an analysis using multidisciplinary, multinational expert groups.

OBJECTIVES: To explore the extent of variation in the detection of dementia in primary care across Europe, and the potential for the development of European guidelines. METHOD: A mixture of focus group and adapted nominal group methods involving 23 experts of different disciplines and from eight European countries. RESULTS: The diagnosis of dementia should be 'timely' rather than 'early'. Timeliness has an impact on the patient, on the caregiver, on healthcare professionals, and on society. Ethical and moral issues may interfere with the aim of timely diagnosis. Guidelines may be important for facilitating a timely diagnosis of dementia, but were infrequently used and not even available in three of the eight countries. Referral pathways often depended on health care system characteristics, differing throughout the eight European countries, whilst diagnostic strategies differed due to varied cultural influences. There was consensus that national variations can be reduced and timely diagnosis enhanced by combining simple tests using a systematic stepwise case-finding strategy, in conjunction with a strong infrastructure of multidisciplinary collaboration. CONCLUSIONS: This study identified three key themes that should be considered in harmonizing European approaches to the diagnosis of dementia in primary care: (1) a focus on timely diagnosis, (2) the need for the development and implementation of guidelines, and (3) the identification of appropriate referral pathways and diagnostic strategies including multi-professional collaboration. The content of guidelines may be determined by the perspectives of the guideline developers.

A European consensus on outcome measures for psychosocial intervention research in dementia care.

Psychosocial intervention makes a vital contribution to dementia care. However, the lack of consensus about which outcome measures to use to evaluate effectiveness prevents meaningful comparisons between different studies and interventions. This study used an iterative collaborative, evidence-based approach to identify the best of currently available outcome measures for European psychosocial intervention research. This included consensus workshops, a web-based pan-European consultation and a systematic literature review and a rigorous evaluation against agreed criteria looking at utility across Europe, feasibility and psychometric properties. For people with dementia the measures covered the domains of quality of life, mood, global function, behaviour and daily living skills. Family carer domains included mood and burden, which incorporated coping with behaviour and quality of life. The only specific staff domain identified was morale, but this included satisfaction and coping with behaviour. In conclusion twenty-two measures across nine domains were recommended in order to improve the comparability of intervention studies in Europe. Areas were identified where improved outcome measures for psychosocial intervention research studies are required.

Distinguishing worry from rumination in older people: a preliminary investigation.

Anxiety and depression are common mental health problems in later life. Since worry and rumination are thought to underpin the respective primary cognitive processes in anxiety and depression, we developed a measure to distinguish worry from rumination in later life. The Ruminative Response Scale was adapted to include items that characterise the cognitive features of worry. We examined its properties using 92 clinical and non-clinical participants, aged over 65. Factor analysis demonstrated a three-factor structure: brooding, reflection and worry with internal consistencies of alpha = 0.72, alpha = 0.67 and alpha = 0.55 respectively. We found no evidence for concurrent validity of these factors using the Penn State Worry Questionnaire. Modest but significant associations between reflection and brooding (r = 0.36) and reflection and worry (r = 0.2) were found. Brooding and worry sub-scales remained unrelated. We suggest that it is possible to distinguish worry from rumination in older people and that differentiating between their key underlying characteristics in the assessment of mood problems may enhance the targeting and evaluation of cognitive-behavioural therapy for anxiety and depression in later life. Future research with a substantial clinical sample is needed to explore the underlying dimensions and correlates of worry in later life.

An evaluation of two self-report screening measures for mood in an out-patient chronic heart failure population.

OBJECTIVE: To examine the criterion validity of the Hospital Anxiety and Depression Scale (HADS) and the Geriatric Depression Scale 15-item (GDS-15) in a community sample of Chronic Heart Failure (CHF) out-patients. METHODS: Eighty-eight of 203 older adults with confirmed CHF responded to a postal survey and participated in a face-to-face interview. The GDS-15 and HADS were compared to diagnoses from the Structured Clinical Interview for DSM-IV (SCID-I), using a receiver operating characteristic (ROC) analysis and positive and negative predictive values, sensitivity and specificity for various cut-off points. RESULTS: For all depressive disorders, the area under the ROC curve for the GDS-15 was 0.883 and a cut-off of 5 gave a sensitivity of 0.818 and a specificity of 0.833. The area under the ROC curve for the HADS Depression (D) and Anxiety (A) were 0.889 and 0.941 respectively. At a cut-off of 7, the HADS-A gave a sensitivity of 0.938 and a specificity of 0.847. At a cut-off of 4, the HADS-D gave a sensitivity of 0.864 and a specificity of 0.788. CONCLUSIONS: The GDS-15 and HADS are valid screening tools for detecting depression in aged CHF out-patients. However, use of the HADS requires reduced cut-points to ensure that patients with mood disorder are not missed in this population.

Development of a measure of the concerns held by people with implanted cardioverter defibrillators: the ICDC.

OBJECTIVES: To develop a questionnaire to measure the extent and severity of the concerns of people with an implanted cardioverter defibrillator. DESIGN: Items were generated from patient interviews, expert review and the research literature on patients' worries and concerns. A pilot version was administered to a series of ICD patients and repeated for test-retest reliability 6 weeks later. Psychometric tests including the screen test, factor analysis and various reliability assessments were undertaken. It was predicted that the greater the extent and severity of concerns, the greater the anxiety experienced by the ICD patient. Scores were compared with a validated measure of anxiety and depression administered at the same time. RESULTS: Fifty-seven (64%) patients completed and returned the questionnaire and a further 22 (100% of those asked) completed the 6-week retest. Reliability and validity appeared to be good and two factors were identified. Both total score and the individual factor scores correlated moderately with anxiety. CONCLUSIONS: The questionnaire appears to reflect patients' concerns and, as predicted, these were associated with the patients' anxiety level. The scale requires further testing to reveal if it is of use both clinically and for research purposes.

Prevalence and predictors of anxiety and depression in a sample of chronic heart failure patients with left ventricular systolic dysfunction.

OBJECTIVE: To determine the prevalence and predictors of anxiety and depression in patients with heart failure due to Left Ventricular Systolic Dysfunction (LVSD). BACKGROUND: Psychological adjustment to Chronic Heart Failure (CHF) can be poor, with the prevalence of depression in out-patients ranging from 13% to 48%. The prevalence of anxiety disorders in this population is unknown and the factors that predict anxiety and depression are not well understood. METHODS: 100 out-patients from a community heart failure programme completed a clinical diagnostic interview--the Structured Clinical Interview (SCID-I), to evaluate anxiety and depression. Mean age was 67+/-11 years, 17% were women and 91% were NYHA Class II or III. Other standardised measures were of cognition, biomedical status, social support and previous physical and mental health history. RESULTS: The prevalence rates of anxiety and depression (all subtypes) were 18.4% and 28.6%, respectively. Predictors of depression included a reported history of mental ill-health and NYHA class. Predictors of anxiety included a reported history of mental ill-health, co-morbid physical illness (diabetes and angina) and NYHA class. Severity of LVSD did not predict either anxiety or depression. CONCLUSIONS: Both anxiety and depression are common in CHF patients. The data on the predictors of poor psychological adjustment might assist in targeting bio-psychosocial intervention for patients who are at most at risk of anxiety and depression, within community CHF disease management programmes.

Cognitive-behavioural rehabilitation programme for patients with an implanted cardioverter defibrillator: a pilot study.

OBJECTIVES: The effectiveness of a comprehensive 12-week CR programme for ICD patients was evaluated. DESIGN: All surviving and suitable ICD patients being cared for by a regional implantation centre were invited to attend a 12-week cognitive-behavioural cardiac rehabilitation programme that had been modified to meet the needs of this group. Patients assenting were randomized to either an immediate treatment or a waiting treatment group. Measures were taken prior to randomization, at the end of the treatment or waiting period, at the end of the second treatment group for that group only and at three months post-treatment for both groups. OUTCOME MEASURES: The Hospital Anxiety and Depression Scale, the Total Concerns Questionnaire, the Quality of Life after Myocardial Infarction Questionnaire, the EuroQual (subjective health rating scale), the Shuttle Test and a number of ICD shocks and ATP episodes were used in this study. RESULTS: For those patients willing and able to attend, the cognitive-behavioural CR programme produced significant benefits in terms of psychological and functional adaptation to living with the device. CONCLUSIONS: A comprehensive 12-week CR programme that incorporated both psychological and exercise-based components significantly reduced anxiety and depression and improved quality of life of ICD patients. It is not clear if these benefits are sustained.

Cognitive rehabilitation and cognitive training for early-stage Alzheimer's disease and vascular dementia.

BACKGROUND: Memory problems are a defining feature of the early stages of Alzheimer's disease (AD) and vascular dementia. Cognitive training and cognitive rehabilitation are specific approaches designed to address everyday memory difficulties. OBJECTIVES: The main aim was to evaluate the effectiveness and impact of cognitive training and cognitive rehabilitation interventions aimed at improving memory functioning for people in the early stages of Alzheimer's disease or vascular dementia. The two types of intervention were considered separately. SEARCH STRATEGY: The CDCIG Specialized Register, which contains records from MEDLINE, EMBASE, CINAHL, PsycINFO and many other databases, was searched on 9 April 2003. SELECTION CRITERIA: RCTs comparing cognitive rehabilitation or cognitive training interventions with comparison conditions, and reporting outcomes for the person with dementia and/or the family caregiver, were considered for inclusion. DATA COLLECTION AND ANALYSIS: Six studies reporting cognitive training interventions were included. Statistical analyses were conducted to provide an indication of intervention effect sizes. Data from ordinal scales was treated as continuous, and a fixed effects model was applied in calculating weighted mean differences and 95% confidence intervals. No studies were found that reported a fully individualised cognitive rehabilitation approach. MAIN RESULTS: None of the six studies reporting cognitive training interventions demonstrated any statistically significant effects in any domain, although there were indications of some modest, non-significant effects in various domains of cognitive functioning. REVIEWER'S CONCLUSIONS: The present findings do not provide strong support for the use of cognitive training interventions for people with early-stage AD or vascular dementia, although these findings must be viewed with caution due to the limited number of RCTs available and to the methodological limitations identified, and further well-designed trials would help to provide more definitive evidence. Due to a complete absence of RCTs evaluating an individualised cognitive rehabilitation approach, It is not possible at present to draw conclusions about the efficacy of individualised cognitive rehabilitation interventions for people with early-stage dementia, and further research is required in this area.

Defining "early dementia" and monitoring intervention: what measures are useful in family caregiving?

Measures of cognition are often used to define and measure the progress of dementia and outcomes of intervention. This paper examines whether measures of psychosocial disability used with those of cognition are more useful than measures of cognition alone, particularly in early dementia. A measure of cognition and two instruments of caregiver burden, used as routine clinical outcome measures of three types of Old Age Psychiatry dementia services, were examined. All cases with dementia in a memory clinic (MC; n = 149), a community mental health service for older people (CMHT; n = 120) and a specialist dementia day hospital (DH; n = 118), in one NHS district were followed up at 12 months. Measures of cognition (MMSE), behaviour, caregiver coping (Problem Checklist; PC) and caregiver mood (Hospital Anxiety and Depression Scale; HAD) were taken at baseline (MC, n = 48; CMHT, n = 113; DH, n = 55) and at follow-up (MC, n = 35; CMHT, n = 34; DH, n = 23). At baseline, all three groups had an average MMSE score of "mild impairment" but measures of behaviour and caregiver burden showed subtle between-group differences. At the 12-month follow-up, cognition remained stable in all groups, but the frequency of day-to-day problems increased and caregiver mood deteriorated in families receiving DH support. The use of psychosocial measures of disability in conjunction with those of cognition, are important in the definition and longitudinal measurement of intervention and support in early dementia.

An electronic memory aid to support prospective memory in patients in the early stages of Alzheimer's disease: a pilot study.

The use of an electronic memory aid (EMA) for patients with mild-to-moderate probable Alzheimer disease is examined in five outpatients aged 58-79 years. The ability to remember to carry out seven tasks at a particular time was evaluated in three experimental conditions: recall without an external memory aid, recall with a written list and recall with support available from an EMA. The use of an EMA significantly improved patients' prospective memory, while the written list and free recall were not useful. Future research that examines the value of using an EMA to help with tasks that are associated with prospective memory with a larger sample of patients within their own home context is suggested.

The Challenging Behaviour Scale (CBS): development of a scale for staff caring for older people in residential and nursing homes.

OBJECTIVES: A review of behavioural rating scales identified the need for a measure of resident behaviours that staff in care homes for older people find difficult to manage. A 25-item, broad-based rating scale, the Challenging Behaviour Scale (CBS), was developed to meet this need and its psychometric properties were examined. DESIGN: Cross-sectional surveys. METHODS: Ratings of 484 residents, living in 16 homes across England, were used to examine four methods of collecting inter-rater reliability data. Ratings of 382 residents living in 13 homes were used to evaluate criterion validity and to establish norms. Six further homes were used to explore qualitatively the validity of the suggested norms. Ratings of 98 residents living in four further homes were used to examine concurrent validity. The predictive validity of the CBS 'challenge' score was evaluated, using time-sampled direct observation of challenging behaviour in 237 residents, living in 11 homes. RESULTS: The scale records staff reports of the incidence, frequency and 'management difficulty' of resident behaviour and it can also identify 'challenging residents' through a computed score. It has good internal consistency, good test-retest reliability and adequate validity. Inter-rater reliability is good when staff receive training or when staff groups of at least three, of mixed qualifications, complete the scale. Norms are suggested for prospective studies of the prevalence of challenging behaviour. CONCLUSIONS: The CBS is quick to complete and may have potential for the evaluation of psychosocial interventions in care settings. It is, as far as we know, the first staff observational rating scale that is based on the reports of care staff, who constitute the backbone of residential care provision. Suggestions for improvements in criterion and content validity are outlined.

Functional analysis of challenging behaviour in dementia: the role of superstition.

BACKGROUND: Intervention for challenging behaviour of residents living in care homes is a neglected area of research. Pharmacological methods of management are widespread, although support for their efficacy is, on the whole, poor. AIMS: There is little research on non-pharmacological methods of management and the present study aimed to add to the small literature in this area, by examining the meaning of behaviour for a given resident, within a functional analytic experimental framework. METHODS: The study involved a systematic manipulation of specific trigger situations to evaluate their influence on challenging behaviour, using a single case experimental design. RESULTS: Five residents with agitated and aggressive behaviour were successfully managed. The difficulties in engaging staff in the use of non-pharmacological, rather than pharmacological, methods and the scope for future randomised trials using psychological and environmental interventions to manage challenging behaviour, are discussed.

Can staff training reduce behavioural problems in residential care for the elderly mentally ill?

The effect of a brief in-service training programme on the psychosocial management of behavioural disturbance in residential care is described. Although the incidence of problematic behaviour did not change 3 months after training, staff in the experimental homes reported a significant improvement in their management of problematic behaviour, as compared to the control home. However, these effects were not maintained a year later. The importance of post-training supervision and the sociocultural context of the home in the maintenance of psychosocial intervention in residential settings is discussed.