Robert T. Woods

Whose quality of life is it anyway? The validity and reliability of the Quality of Life-Alzheimer's Disease (QoL-AD) scale

Quality of life (QoL) is becoming an increasingly used outcome measure in both clinical practice and research. There are now more than 1000 scales available to measure QoL, and it is important that they are assessed for reliability and validity. This study aims to assess the reliability and validity of the Quality of Life-Alzheimers Disease (QoL-AD) scale, which is dementia specific and brief and uses the patients own responses. Two separate samples of people with dementia (sample 1, n = 60; sample 2, n = 201) were assessed. Five focus groups were conducted involving both people with dementia and their caregivers; the focus groups showed that people with dementia had higher hopes for their QoL than their caregivers did for them. Questionnaires about the scale were completed by 71 health care professionals working with people with dementia. The scale was found to have good content validity with no additional items required and all items necessary. It also correlated well with the Dementia Quality of Life scale (0.69) and with the Euroqol-5D scale (0.54), indicating good criterion concurrent validity. Construct validity was also good with the principal components analysis showing all 13 items of the QoL-AD loaded on component 1. Interrater reliability was excellent with all Cohens kappa values >0.70. Internal consistency was excellent with a Cronbachs alpha coefficient of 0.82. Some people with severe dementia and a Mini-Mental State Examination score as low as 3 were able to satisfactorily complete the QoL-AD. The QoL-AD has very good psychometric properties and can be completed with people with a wide range of severity of dementia.

Cognitive training and cognitive rehabilitation for people with early-stage Alzheimer's disease: A review

Memory difficulties are a defining feature of Alzheimers disease (AD), with significant implications for people with AD and family members. Interventions aimed at helping with memory difficulties, therefore, may be important in reducing excess disability and improving well-being. There is a long tradition of cognition-focused intervention in dementia care. In this review we offer broad definitions and descriptions of three approaches to cognition-focused intervention for people with dementia—cognitive stimulation, cognitive training and cognitive rehabilitation—and attempt to clarify the underlying concepts and assumptions associated with each. Cognitive training and cognitive rehabilitation are the main approaches used with people who have early-stage AD. We review a range of studies describing the implementation of these two approaches, and evaluate the evidence for their effectiveness. With regard to cognitive training, the evidence currently available does not provide a strong demonstration of efficacy, but findings must be viewed with caution due to methodological limitations. It is not possible at present to draw firm conclusions about the efficacy of individualised cognitive rehabilitation interventions for people with early-stage dementia, due to the lack of any randomised controlled trials (RCTs) in this area, although indications from single-case designs and small group studies are cautiously positive. Further research is required that takes account of the conceptual and methodological issues outlined here.

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.

Goal-Oriented Cognitive Rehabilitation for People With Early-Stage Alzheimer Disease: A Single-Blind Randomized Controlled Trial of Clinical Efficacy

OBJECTIVES To provide evidence regarding the clinical efficacy of cognitive rehabilitation (CR) in early-stage Alzheimer disease (AD). DESIGN Single-blind randomized controlled trial comparing CR with relaxation therapy and no treatment. SETTING Outpatient, community-based setting. PARTICIPANTS Sixty-nine individuals (41 women, 28 men; mean age 77.78 years, standard deviation 6.32, range = 56-89) with a diagnosis of AD or mixed AD and vascular dementia and a Mini-Mental State Examination score of 18 or above, and receiving a stable dose of acetylcholinesterase-inhibiting medication. Forty-four family carers also contributed. INTERVENTION Eight weekly individual sessions of CR consisting of personalized interventions to address individually relevant goals supported by components addressing practical aids and strategies, techniques for learning new information, practice in maintaining attention and concentration, and techniques for stress management. MEASUREMENTS The primary outcomes were goal performance and satisfaction, assessed using the Canadian Occupational Performance Measure. Questionnaires assessing mood, quality of life and career strain, and a brief neuropsychological test battery were also administered. A subset of participants underwent functional magnetic resonance imaging (fMRI). RESULTS CR produced significant improvement in ratings of goal performance and satisfaction, whereas scores in the other two groups did not change. Behavioral changes in the CR group were supported by fMRI data for a subset of participants. CONCLUSIONS The findings support the clinical efficacy of CR in early-stage AD. CR offers a means of assisting people with early-stage AD and their families in managing the effects of the condition.

Discovering the person with Alzheimer's disease: Cognitive, emotional and behavioural aspects

The person-centred approach to dementia care emerges from a new emphasis on the experience of the person with dementia. The person is seen as attempting to manage and cope with their difficulties, through a variety of coping mechanisms. Some are able to seek to maximize their cognitive capacities, and there are a number of strategies now available to assist in this process. However, the emotional aspects merit increased attention, with more awareness needed of the range of powerful emotions that may be present, and of the possibility of therapeutic interventions to alleviate symptoms of anxiety and depression. Many of the difficult behaviours seen in dementia may be understood more fully with an appreciation of their emotional underpinning, in feelings of anger, fear, insecurity and hopelessness. The interaction between caregiver strain and challenging behaviour also merits further exploration. The person-centred approach has many implications for practice, as well as for research. The perspective of the person with dementia, and outcomes reflecting that perspective, must be represented in research studies in dementia care. Caregivers, whether family members or paid workers, require additional support in order to recognize the persons needs and to meet them in ways which enable the persons identity and full human value to be upheld.

Subjective Memory Complaints and Awareness of Memory Functioning in Mild Cognitive Impairment: A Systematic Review

Objectives: Subjective memory complaint (SMC) is central to the diagnosis of mild cognitive impairment (MCI). People with MCI are at a higher risk of progressing to dementia, and research on SMC is contradictory in terms of the accuracy of SMC and its predictive role for future dementia. One possible reason for these contradictory findings is that the level of awareness of memory function may vary among people with MCI. This review examines whether the level of awareness of memory functioning varies amongst people classified as having MCI and whether there is support for the suggestion that the level of awareness in MCI predicts future progression to dementia. Method: Sixteen studies were identified which evaluate the awareness level in people classified as having MCI in either a clinical or research setting. In addition to the outcome of each study, the conceptualization of awareness, ‘object’ of awareness and methodology were also considered. Results: There is evidence to show that the level of awareness in MCI does vary, and this may have implications for future progression to dementia. Conclusions: Given the increased risk of progression to dementia for those identified as having MCI, the role of awareness should be explored further with due consideration given to the conceptualisation of awareness and the methodology employed. The finding of variability in awareness has implications for the use of SMC in the diagnostic criteria for MCI.

Examination of a theoretical model of psychological resilience in older age.

Objective: This article integrates a number of theoretical perspectives and examines the concept of psychological resilience in older age. Drawing on the literature it is hypothesised that an overarching construct–resilience–accounts for the functioning of a number of psychological resources (self-esteem, personal competence and control). Method: The factorial validity of the resources as indicators of resilience is tested using confirmatory factor analysis. The analyses focus on previously unexplored survey data drawn from a representative sample of people aged between 50 and 90 in England, Wales and Scotland (N = 1847). Results: The results find a common factor (a higher-order model) provides the best explanation of the relationships between the resources, demonstrating an important first account for developing further work on this concept. Conclusion: Exploring what might form the basis of resilience from a psychological perspective enables a deeper understanding of why some individuals can remain positive in difficult circumstances, particularly some of the challenges of ageing.

Strain in nursing care of people with dementia: Nurses' experience in Australia, Sweden and United Kingdom.

Objectives: The aim of this study was to explore nurses’ experience of strain in dementia care. Method: Focus groups were held with 35 nurses in Sweden, Australia and UK, who care for people with dementia. The discussions were tape-recorded and analysed using qualitative content analysis. Results: The nurses described the complexity of their situation and referred to environmental factors such as ‘the system’, community attitudes, other staff, residents’ family members and also their own family. With regard to caring for people with dementia, three main sources of strain could be identified: Being unable to reach; Trying to protect; and Having to balance competing needs. Conclusion: The nurses’ experience could be understood as a desire to do the best for the people in their care by trying to alleviate their suffering and enhance their quality of life. When they did not have the resources, opportunity or ability to do this, it caused strain.

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 persons 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 Alzheimers 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.

Cognitive stimulation for dementia: A systematic review of the evidence of effectiveness from randomised controlled trials

Cognitive stimulation is a psychological intervention widely used in dementia care, which offers a range of activities for people with dementia and provides general stimulation of cognitive abilities. This systematic review evaluates the effectiveness of cognitive stimulation in dementia. The review included studies from the Specialized Register of the Cochrane Dementia and Cognitive Improvement Group, called ALOIS. This yielded ninety-four studies, of which fifteen were randomised controlled trials meeting the inclusion criteria. The analysis included 718 subjects (407 receiving cognitive stimulation and 311 in control groups). Results were subjected to a meta-analysis. A consistent significant benefit to cognitive function was identified following treatment and the benefits appeared to be over and above any medication effects. This remained evident at follow-up up to three months after the end of treatment. In secondary analyses, with smaller total sample sizes, significant benefits were also noted for quality of life and well-being, and on staff ratings of communication and social interaction. No differences in relation to mood, activities of daily living or challenging behaviour were noted. There is consistent evidence that cognitive stimulation interventions benefit cognitive function and aspects of well-being. Cognitive stimulation should be made more widely available in dementia care.