Enid Levin

Effectiveness of educational interventions in improving detection and management of dementia in primary care: cluster randomised controlled study

Abstract Objective To test the effectiveness of educational interventions in improving detection rates and management of dementia in primary care. Design Unblinded, cluster randomised, before and after controlled study. Setting General practices in the United Kingdom (central Scotland and London) between 1999 and 2002. Interventions Three educational interventions: an electronic tutorial carried on a CD Rom; decision support software built into the electronic medical record; and practice based workshops. Participants 36 practices participated in the study. Eight practices were randomly assigned to the electronic tutorial; eight to decision support software; 10 to practice based workshops; and 10 to control. Electronic and manual searches yielded 450 valid and usable medical records. Main outcome measures Rates of detection of dementia and the extent to which medical records showed evidence of improved concordance with guidelines regarding diagnosis and management. Results Decision support software (P = 0.01) and practice based workshops (P = 0.01) both significantly improved rates of detection compared with control. There were no significant differences by intervention in the measures of concordance with guidelines. Conclusions Decision support systems and practice based workshops are effective educational approaches in improving detection rates in dementia.

Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia

Objectives: To explore the extent to which commonly used measures of specific outcomes in dementia are an appropriate proxy for quality of life in dementia. Methods: This was a cross sectional study set in communities in London and Nottingham, comprising 101 people with dementia and their 99 main family caregivers. The main outcome measures were health related quality of life in dementia (measured by the DEMQOL-Proxy), cognition (Mini Mental State Examination), functional impairment (Barthel Index), behavioural and psychological symptoms in dementia (Neuropsychiatric Inventory; NPI), and carer mental health (General Health Questionnaire). Results: On univariate analysis, decreased quality of life was statistically significantly correlated with higher levels of behavioural and psychological disturbance (NPI total score and its agitation, depression, anxiety, disinhibition, and irritability subscales); younger age of the person with dementia; and poorer mental health of the carer. Quality of life was not statistically significantly associated with cognition or carer age. In a multivariate model, psychological and behavioural disturbance and patient age remained statistically significantly associated with quality of life. Carer mental health was no longer statistically significantly associated, and cognition and functional limitation remained statistically insignificant. Conclusions: These data suggest that quality of life in dementia is complex, and that simple proxy substitutions of discrete measures such as cognition or function are likely to miss important factors.

Development of a new measure of health-related quality of life for people with dementia: DEMQOL.

BACKGROUND We identified the need to develop a scientifically rigorous measure of health-related quality of life (HRQL) in dementia that would be appropriate for use at all stages of dementia severity and would be available in both self- and proxy-report versions. METHOD We used standard psychometric methods to eliminate items with poor psychometric properties (item-reduction field test) and to assess the acceptability, reliability and validity of the item-reduced instruments (psychometric evaluation field test). We developed and validated two versions of DEMQOL: a 28-item interviewer-administered questionnaire that is self-reported by the person with dementia (DEMQOL) and a 31-item interviewer-administered questionnaire that is proxy-reported by a caregiver (DEMQOL-Proxy). RESULTS DEMQOL shows high reliability (internal consistency and test-retest) and moderate validity in people with mild/moderate dementia. DEMQOL-Proxy shows good acceptability and internal consistency and moderate evidence of validity in people with mild/moderate and severe dementia. Test-retest reliability and performance in people with severe dementia need further testing. CONCLUSIONS DEMQOL and DEMQOL-Proxy show psychometric properties that are comparable with the best available dementia-specific measures of HRQL. We recommend that DEMQOL and DEMQOL-Proxy are used together. Reliability and validity need to be confirmed in independent samples and responsiveness needs to be evaluated.

Depression and the response of residential homes to physical health needs

Objective. To investigate the response of residential homes to four specific health problems of residents and the relationship between the quality of this response and the prevalence of depression.

Integrating health and social care: implications for joint working and community care outcomes for older people.

In England, the theme of promoting collaborative working between social and primary health care remains high on the policy agenda. The underlying assumption, largely untested, is that a greater degree of structural integration benefits service users. This paper reports the findings from a feasibility study comparing two models of joint working and examining the relative impact of personal characteristics, service use and co-location on the likelihood of older people remaining in the community. Baseline standardised interviews with 79 older people aged 75 + with complex needs in two social services departments were carried out following referral, covering social circumstances, physical and mental health and services received, with follow-up interviews after six months. Contacts between social workers and primary care were tracked. The findings suggest that co-location does not necessarily lead to substantially closer interprofessional working in terms of greater contact between social workers and GPs or social workers and community nurses. Factors affecting outcome were degree of cognitive impairment, intensity of home care received and whether the older person lived alone. Whatever the model of collaborative working, its effects on remaining in the community must be assessed in the wider context of the characteristics and services received by older people.

Concordance with clinical practice guidelines for dementia in general practice

Background: Dementia is said to be under-recognized and sub-optimally managed in primary care, but there is little information about actual processes of diagnosis and clinical care. Aim: To determine general practitioners’ concordance with clinical guidelines on the diagnosis and management of patients with dementia. Design: Unblinded, cluster randomized pre-test–post-test controlled trial involving 35 practices in the UK. Methods: Patients with a diagnosis of probable or confirmed dementia were identified in practices, and permission sought from the older person and/or their carer to study the medical records of these patients. Medical records were reviewed using a data extraction tool designed for the study and based on published guidelines, and unweighted scores for diagnostic concordance and management concordance were calculated. Results: We reviewed 450 records of patients aged 75 and over with a diagnosis of dementia and found that: only 4% of cases were identified first in secondary care; two-thirds of those identified in primary care were referred immediately; about one-third identified had informant history and blood tests documented at the Index consultation and one-fifth underwent cognitive function testing. Discussion: The records analysed in this study came from a period before the Quality Outcomes Framework and show that the documentation in primary care of the diagnostic process in dementia syndromes is good, although there were significant gaps, particularly around depression case-finding. Information about management processes were less evident in the records.

Methodological problems in dementia research in primary care: a case study of a randomized controlled trial

The emerging UK national research network in neurodegenerative diseases and dementias aims to promote large-scale community-based studies of therapeutic interventions, based in primary care. However, trials in primary care settings can be problematic, a common difficulty being the recruitment of a large enough sample. The article discusses recruitment issues in a multi-centre randomized controlled trial of differing educational approaches to improving dementia care in general practice. Sample size calculations based on community studies of prevalence may be misleading in intervention trials which may recruit practices with atypical demography. Recruitment rates for practitioners in this study were lower than expected. Professionals excluded themselves from the study mainly due to pressures of time and staff shortages, and we detected both ambivalent attitudes to primary care research and a perception that research into dementia care was not a high priority. Evaluation of the quality of care may be perceived as criticism of clinical practice, at a time when general practice is undergoing major administrative and contractual changes. Variations in Research Ethics Committee conditions for approval led to different methods of recruitment of patients and carers into the study, a factor which may have contributed to disparate levels of recruitment across study sites. Patient and carer levels of recruitment were lower than expected and were affected partly by carers’ time pressures and other family commitments, but largely by problems in identifying patients and carers in the practices. The development of research potential in primary care is at an early stage and studies reliant on patient recruitment in general practice must allow for multiple obstacles to enrollment. This is particularly relevant for studies of dementia care, where the prevalence of dementia in a demographically average population is low and the incidence very low, compared with other disabilities. Professionals may give dementia low priority in allocating practice time for research projects, and strategies to address this problem are needed.

Outcome of referral to social services departments for people with cognitive impairment

The objective of this study was to determine how the entry into long term care of people assessed by their local social services department (SSD) under the National Health Service and Community Care Act 1990 is predicted by the severity of their cognitive impairment, care provided by family members, and the receipt of community care services. The design involved a cohort study of people over one and a half years following referral (min–max: 1–2 years) from three SSDs (county council, metropolitan and inner London boroughs). Consecutive recruitment of 141 people with cognitive impairment aged 65 and over took place over a 4 month period. The main outcome measure was survival analysis of time taken from referral to entering long term care at follow‐up. The receipt and intensity of community care services increased the probability of remaining at home. People with mild or moderate cognitive impairment were more likely to remain at home if they had a spouse or daughter carer. Analysis of the interaction between three main effects predicting entry to long term care (severity of cognitive impairment, access to a carer, and the receipt of home care or day care) suggests that while carers are central in determining whether older people with cognitive impairment are able to remain living in the community, there are limits to the care they can provide. Copyright

Joint Working Between Social and Health Services in the Care of Older People in the Community: A Cost Study

There have been few economic evaluations of joint working between social and health care. This paper focuses on collaboration between professionals providing care for people aged 75 and over, and examines the economic costs of contacts made by social workers with community nurses, GPs and older people or their carers. Two areas were studied, one where social care and primary care services were co‐located, and the other with social work teams located separately from local health services. The two forms of social care location had an impact on contacts and costs but overall it was fairly small. Contact costs made up only a small amount of the overall costs of care These findings suggest that altering the organisational arrangements for care delivery may improve the process of care delivery, but result in only minor changes to the proportion of overall resources directed to older service users.

Respite Care in Homes and Hospitals

This chapter and the two that follow examine specific functions of residential care locating them within the system of formal and informal institutions that contribute to the production of welfare in society. Continuing the theme of the previous two chapters of the potential permeability of residential and community-based care, Jo Moriarty and Enid Levin emphasise the interdependence of both forms of care and informal caring networks. They suggest that the neglect of this systemic view has led to a limited understanding of the potential, specific role of this form of provision. As in previous chapters, the conclusion that emerges from analysis of their own research and that of others in the UK and abroad is that the continued development of this type of residential care is essential to the maintenance of caring communities.