Basics of qualitative research: Grounded theory procedures and techniques

Background:Whetherhearinglossisindependentlyassociatedwithacceleratedcognitivedeclineinolderadults is unknown. Methods:Westudied1984olderadults(meanage,77.4 years) enrolled in the Health ABC Study, a prospective observational study begun in 1997-1998. Our baseline cohort consisted of participants without prevalent cognitive impairment (Modified Mini-Mental State Examination [3MS] score, 80) who underwent audiometric testinginyear5.Participantswerefollowedupfor6years. Hearing was defined at baseline using a pure-tone average of thresholds at 0.5 to 4 kHz in the better-hearing ear. Cognitive testing was performed in years 5, 8, 10, and11andconsistedofthe3MS(measuringglobalfunction) and the Digit Symbol Substitution test (measuring executive function). Incident cognitive impairment was definedasa3MSscoreoflessthan80oradeclinein3MS score of more than 5 points from baseline. Mixedeffects regression and Cox proportional hazards regression models were adjusted for demographic and cardiovascular risk factors. Results: In total, 1162 individuals with baseline hearing loss (pure-tone average 25 dB) had annual rates of declinein3MSandDigitSymbolSubstitutiontestscoresthat were41%and32%greater,respectively,thanthoseamong individuals with normal hearing. On the 3MS, the annual score changes were 0.65 (95% CI, 0.73 to 0.56) vs 0.46(95%CI,0.55to0.36)pointsperyear(P=.004). On the Digit Symbol Substitution test, the annual score changes were 0.83 (95% CI, 0.94 to 0.73) vs 0.63 (95% CI, 0.75 to 0.51) points per year (P=.02). Comparedtothosewithnormalhearing,individualswithhearing loss at baseline had a 24% (hazard ratio, 1.24; 95% CI, 1.05-1.48) increased risk for incident cognitive impairment. Rates of cognitive decline and the risk for incident cognitiveimpairmentwerelinearlyassociatedwiththeseverity of an individual’s baseline hearing loss.

/pdf/hearing-loss-and-cognitive-decline-in-older-adults-12fsotc194.pdf

Hearing loss and cognitive decline in older adults

It tells you about most of the points in the full-length Strategy but in less detail. What the words mean When we say we in this booklet, we mean the Department of Health. When we say services, we mean health and social care services in England for people with dementia and family or friends who look after someone with dementia. When we say carer, we mean family carer. When we say Strategy, we mean the National Dementia Strategy. When we say commissioning, we mean planning and paying for services. Words in bold type There is a list of the meanings of some of the words in this booklet on pages 4 and 5. These words are in bold type. Some other words are also in bold but are not in the list on pages 4 and 5. These words are to help you see quickly what the information on each page is about.

Living Well with Dementia: A National Dementia Strategy

Background
This is an update of our previous 2013 review. Several recent trials and systematic reviews of the impact of exercise on people with dementia are reporting promising findings.

Objectives
Primary objective

Do exercise programs for older people with dementia improve their cognition, activities of daily living (ADLs), neuropsychiatric symptoms, depression, and mortality?

Secondary objectives

Do exercise programs for older people with dementia have an indirect impact on family caregivers’ burden, quality of life, and mortality?

Do exercise programs for older people with dementia reduce the use of healthcare services (e.g. visits to the emergency department) by participants and their family caregivers?

Search methods
We identified trials for inclusion in the review by searching ALOIS (www.medicine.ox.ac.uk/alois), the Cochrane Dementia and Cognitive Improvement Group’s Specialised Register, on 4 September 2011, on 13 August 2012, and again on 3 October 2013.

Selection criteria
In this review, we included randomized controlled trials in which older people, diagnosed with dementia, were allocated either to exercise programs or to control groups (usual care or social contact/activities) with the aim of improving cognition, ADLs, neuropsychiatric symptoms, depression, and mortality. Secondary outcomes related to the family caregiver(s) and included caregiver burden, quality of life, mortality, and use of healthcare services.

Data collection and analysis
Independently, at least two authors assessed the retrieved articles for inclusion, assessed methodological quality, and extracted data. We analysed data for summary effects. We calculated mean differences or standardized mean difference (SMD) for continuous data, and synthesized data for each outcome using a fixed-effect model, unless there was substantial heterogeneity between studies, when we used a random-effects model. We planned to explore heterogeneity in relation to severity and type of dementia, and type, frequency, and duration of exercise program. We also evaluated adverse events.

Main results
Seventeen trials with 1067 participants met the inclusion criteria. However, the required data from three included trials and some of the data from a fourth trial were not published and not made available. The included trials were highly heterogeneous in terms of subtype and severity of participants' dementia, and type, duration, and frequency of exercise. Only two trials included participants living at home.

Our meta-analysis revealed that there was no clear evidence of benefit from exercise on cognitive functioning. The estimated standardized mean difference between exercise and control groups was 0.43 (95% CI -0.05 to 0.92, P value 0.08; 9 studies, 409 participants). There was very substantial heterogeneity in this analysis (I² value 80%), most of which we were unable to explain, and we rated the quality of this evidence as very low. We found a benefit of exercise programs on the ability of people with dementia to perform ADLs in six trials with 289 participants. The estimated standardized mean difference between exercise and control groups was 0.68 (95% CI 0.08 to 1.27, P value 0.02). However, again we observed considerable unexplained heterogeneity (I² value 77%) in this meta-analysis, and we rated the quality of this evidence as very low. This means that there is a need for caution in interpreting these findings.

In further analyses, in one trial we found that the burden experienced by informal caregivers providing care in the home may be reduced when they supervise the participation of the family member with dementia in an exercise program. The mean difference between exercise and control groups was -15.30 (95% CI -24.73 to -5.87; 1 trial, 40 participants; P value 0.001). There was no apparent risk of bias in this study. In addition, there was no clear evidence of benefit from exercise on neuropsychiatric symptoms (MD -0.60, 95% CI -4.22 to 3.02; 1 trial, 110 participants; P value .0.75), or depression (SMD 0.14, 95% CI -0.07 to 0.36; 5 trials, 341 participants; P value 0.16). We could not examine the remaining outcomes, quality of life, mortality, and healthcare costs, as either the appropriate data were not reported, or we did not retrieve trials that examined these outcomes.

Authors' conclusions
There is promising evidence that exercise programs may improve the ability to perform ADLs in people with dementia, although some caution is advised in interpreting these findings. The review revealed no evidence of benefit from exercise on cognition, neuropsychiatric symptoms, or depression. There was little or no evidence regarding the remaining outcomes of interest (i.e., mortality, caregiver burden, caregiver quality of life, caregiver mortality, and use of healthcare services).

/pdf/exercise-programs-for-people-with-dementia-cm39bu1fzu.pdf

Exercise programs for people with dementia

Background
The Mini Mental State Examination (MMSE) is a cognitive test that is commonly used as part of the evaluation for possible dementia.

Objectives
To determine the diagnostic accuracy of the Mini-Mental State Examination (MMSE) at various cut points for dementia in people aged 65 years and over in community and primary care settings who had not undergone prior testing for dementia.

Search methods
We searched the specialised register of the Cochrane Dementia and Cognitive Improvement Group, MEDLINE (OvidSP), EMBASE (OvidSP), PsycINFO (OvidSP), LILACS (BIREME), ALOIS, BIOSIS previews (Thomson Reuters Web of Science), and Web of Science Core Collection, including the Science Citation Index and the Conference Proceedings Citation Index (Thomson Reuters Web of Science). We also searched specialised sources of diagnostic test accuracy studies and reviews: MEDION (Universities of Maastricht and Leuven, www.mediondatabase.nl), DARE (Database of Abstracts of Reviews of Effects, via the Cochrane Library), HTA Database (Health Technology Assessment Database, via the Cochrane Library), and ARIF (University of Birmingham, UK, www.arif.bham.ac.uk). We attempted to locate possibly relevant but unpublished data by contacting researchers in this field. We first performed the searches in November 2012 and then fully updated them in May 2014. We did not apply any language or date restrictions to the electronic searches, and we did not use any methodological filters as a method to restrict the search overall.

Selection criteria
We included studies that compared the 11-item (maximum score 30) MMSE test (at any cut point) in people who had not undergone prior testing versus a commonly accepted clinical reference standard for all-cause dementia and subtypes (Alzheimer disease dementia, Lewy body dementia, vascular dementia, frontotemporal dementia). Clinical diagnosis included all-cause (unspecified) dementia, as defined by any version of the Diagnostic and Statistical Manual of Mental Disorders (DSM); International Classification of Diseases (ICD) and the Clinical Dementia Rating.

Data collection and analysis
At least three authors screened all citations.Two authors handled data extraction and quality assessment. We performed meta-analysis using the hierarchical summary receiver-operator curves (HSROC) method and the bivariate method.

Main results
We retrieved 24,310 citations after removal of duplicates. We reviewed the full text of 317 full-text articles and finally included 70 records, referring to 48 studies, in our synthesis. We were able to perform meta-analysis on 28 studies in the community setting (44 articles) and on 6 studies in primary care (8 articles), but we could not extract usable 2 x 2 data for the remaining 14 community studies, which we did not include in the meta-analysis. All of the studies in the community were in asymptomatic people, whereas two of the six studies in primary care were conducted in people who had symptoms of possible dementia. We judged two studies to be at high risk of bias in the patient selection domain, three studies to be at high risk of bias in the index test domain and nine studies to be at high risk of bias regarding flow and timing. We assessed most studies as being applicable to the review question though we had concerns about selection of participants in six studies and target condition in one study.

The accuracy of the MMSE for diagnosing dementia was reported at 18 cut points in the community (MMSE score 10, 14-30 inclusive) and 10 cut points in primary care (MMSE score 17-26 inclusive). The total number of participants in studies included in the meta-analyses ranged from 37 to 2727, median 314 (interquartile range (IQR) 160 to 647). In the community, the pooled accuracy at a cut point of 24 (15 studies) was sensitivity 0.85 (95% confidence interval (CI) 0.74 to 0.92), specificity 0.90 (95% CI 0.82 to 0.95); at a cut point of 25 (10 studies), sensitivity 0.87 (95% CI 0.78 to 0.93), specificity 0.82 (95% CI 0.65 to 0.92); and in seven studies that adjusted accuracy estimates for level of education, sensitivity 0.97 (95% CI 0.83 to 1.00), specificity 0.70 (95% CI 0.50 to 0.85). There was insufficient data to evaluate the accuracy of the MMSE for diagnosing dementia subtypes.We could not estimate summary diagnostic accuracy in primary care due to insufficient data.

Authors' conclusions
The MMSE contributes to a diagnosis of dementia in low prevalence settings, but should not be used in isolation to confirm or exclude disease. We recommend that future work evaluates the diagnostic accuracy of tests in the context of the diagnostic pathway experienced by the patient and that investigators report how undergoing the MMSE changes patient-relevant outcomes.

/pdf/mini-mental-state-examination-mmse-for-the-detection-of-2hf8fes1sc.pdf

Mini‐Mental State Examination (MMSE) for the detection of dementia in clinically unevaluated people aged 65 and over in community and primary care populations

Background: The large majority of people with dementia receive nothing in the way of specialist assessment and care at any stage of their illness. There is a particular lack of services focussed on early identification and intervention in dementia where there is the possibility of long-term harm reduction for people with dementia and their family carers. We have developed a model of care that is complementary to local systems of health and social care (The Croydon Memory Service Model [CMSM]). This is a low-cost, high-throughput, generic service to enable early identification and intervention in dementia. It is a multi-agency approach with joint ownership by health services, social services and the voluntary sector with embedded specifically-tailored approaches to primary care and minority ethnic communities. Method: We completed a service evaluation of the introduction of the CMSM in a single borough in South London. Six predefined service goals were set: high acceptability; high appropriate referral rate; successful engagement with people from minority ethnic groups; successful engagement with people with young onset dementia; focus on engagement with mild cases to enable early intervention; and an increase in the overall number of new cases of dementia seen. Mixed qualitative and quantitative methodologies were used including a description and 6-month follow-up of a cohort of 290 consecutive referrals. Results: All key predefined service goals were met: 95% acceptability; 94% appropriate referrals; successful engagement with minority ethnic groups (two-fold greater number compared with that expected from general population demographic data); 17% of referrals under 65 years of age; 68% referrals with mild or minimal dementia severity; and an estimated 63% increase in the number of new cases of dementia seen in Croydon. At 6-month follow up, those referred to the service had decreased behavioural disturbance and increased quality of life compared with baseline. Conclusions: Specific services for early dementia, which deliver diagnosis and care, can be established. These services can increase the numbers of people with early dementia identified and provided with care. Those receiving such services appear to improve in terms of quality of life and behavioural and psychological symptoms of dementia. Next steps should include the establishment of such services in other representative areas and evaluation of their effectiveness in comparison with other models of care.

/pdf/improving-the-quality-of-care-for-mild-to-moderate-dementia-29zep2b2aw.pdf

Improving the quality of care for mild to moderate dementia: an evaluation of the Croydon Memory Service Model.

Objective
To explore the effect of a non-aerobic movement based activity on cognition in people with Alzheimer's type dementia (AD)

Methods
The sample consisted of 27 patients fulfilling the AD ICD-10 diagnostic criteria The patient sample was randomly divided into two groups: The Exercise Group received 6 weeks movement training and comprised 15 participants with a mean age of 705 years (SD: 8) Control Group participated in a standard care group, which served as a control intervention, and consisted of 12 patients with an average age of 757 years (SD: 690) Cognitive functions were assessed using six computerised tests from the CANTAB, pre and post training Data were analysed using t-tests The false discovery rate (FDR) for multiple comparisons as well as Cohen's d effect size was used to assess the significant effects

Results
Significant improvements in sustained attention, visual memory and a trend in working memory were found in the Exercise Group compared to Control Group after the 6 weeks training In addition, after 6 weeks the Control Group deteriorated significantly in attention, while the AD patients who undertook the physical exercise showed a discrete improvement

Conclusions
The present study shows that a short course of non-aerobic movement based exercise is already effective at least in some aspects of cognitive functioning in patients with AD Although the present study is a pilot study with small samples, nevertheless, the results are promising for the further investigation and development of non-aerobic movement programmes Copyright © 2010 John Wiley & Sons, Ltd

The effects on cognitive functions of a movement-based intervention in patients with Alzheimer's type dementia: a pilot study.

PURPOSE: Subjective memory complaint is a term used to refer older adults who report memory problems. Extensive literature exists on its etiology and impact on long-term cognitive decline, and some physicians consider it important in the early detection of dementia. Despite the salient features reported by both patients and clinicians, few people seek formal help for this complaint, and little research has investigated the underlying reasons for this. The current study explored beliefs, attitudes, and help-seeking behaviors. DESIGN AND METHODS: A qualitative study was carried out comprising of 18 face-to-face in-depth interviews. The primary aim was to compare and contrast experiences between people, who sought formal help (n = 9), recruited from a memory service and those who did not seek formal help (n = 9) recruited from a screened community population. RESULTS: The need for both to describe the experiences of an unexplored group and to develop a conceptual help-seeking model prompted the use of thematic framework analysis. Three themes were identified as facilitators and barriers to formal health service use: (a) concern, (b) causation, and (c) perceptions of general practitioner. We identified two further key areas central to shaping help-seeking responses: (a) informal help seeking and (b) alternative pathways to care. IMPLICATIONS: These findings suggest that there is a potential for modifying beliefs and attitudes towards help seeking and can inform the development of services and policy to facilitate help seeking and target and provide improved care or treatment when formal help is sought.

Help-seeking Response to Subjective Memory Complaints in Older Adults: Toward a Conceptual Model

Background: UK health policy requires the early identification and management of dementia. There are few good quality evaluations of models of care in dementia with a particular lack of data from user and carer perspectives. The Croydon Memory Service Model (CMSM) was developed to identify and treat people in the early stages of dementia and its evaluation includes an assessment of service satisfaction.Aim: To complete a qualitative investigation into the satisfaction with the service of those assessed and treated using the CMSM.Method: The CMSM was the subject of a multi-method evaluation, as part of this, semi-structured qualitative interviews were carried out with 16 people with dementia and 15 family carers to establish their opinions of the service. Purposive sampling was used to identify participants with a range of diagnosis, ethnicity, and age. Conventional Content Analysis was used to analyse the data.Results: Six themes concerning satisfaction emerged from the data: initial experience of dementi...

People with dementia and their family carers' satisfaction with a memory service: a qualitative evaluation generating quality indicators for dementia care

There is a need to determine whether health-related quality-of-life (HRQL) assessments in dementia capture what is important, to form a coherent basis for guiding research and clinical and policy decisions. This study investigated structural validity of HRQL assessments made using the DEMQOL system, with particular interest in studying domains that might be central to HRQL, and the external validity of these HRQL measurements. HRQL of people with dementia was evaluated by 868 self-reports (DEMQOL) and 909 proxy reports (DEMQOL-Proxy) at a community memory service. Exploratory and confirmatory factor analyses (EFA and CFA) were conducted using bifactor models to investigate domains that might be central to general HRQL. Reliability of the general and specific factors measured by the bifactor models was examined using omega (ω) and omega hierarchical (ω
 h) coefficients. Multiple-indicators multiple-causes models were used to explore the external validity of these HRQL measurements in terms of their associations with other clinical assessments. Bifactor models showed adequate goodness of fit, supporting HRQL in dementia as a general construct that underlies a diverse range of health indicators. At the same time, additional factors were necessary to explain residual covariation of items within specific health domains identified from the literature. Based on these models, DEMQOL and DEMQOL-Proxy overall total scores showed excellent reliability (ω
 h > 0.8). After accounting for common variance due to a general factor, subscale scores were less reliable (ω
 h < 0.7) for informing on individual differences in specific HRQL domains. Depression was more strongly associated with general HRQL based on DEMQOL than on DEMQOL-Proxy (−0.55 vs −0.22). Cognitive impairment had no reliable association with general HRQL based on DEMQOL or DEMQOL-Proxy. The tenability of a bifactor model of HRQL in dementia suggests that it is possible to retain theoretical focus on the assessment of a general phenomenon, while exploring variation in specific HRQL domains for insights on what may lie at the ‘heart’ of HRQL for people with dementia. These data suggest that DEMQOL and DEMQOL-Proxy total scores are likely to be accurate measures of individual differences in HRQL, but that subscale scores should not be used. No specific domain was solely responsible for general HRQL at dementia diagnosis. Better HRQL was moderately associated with less depressive symptoms, but this was less apparent based on informant reports. HRQL was not associated with severity of cognitive impairment.

/pdf/quality-of-life-assessment-in-dementia-the-use-of-demqol-and-4t2ppm4n6i.pdf

David Matthews

Papers

Improving the quality of care for mild to moderate dementia: an evaluation of the Croydon Memory Service Model.

The effects on cognitive functions of a movement-based intervention in patients with Alzheimer's type dementia: a pilot study.

Help-seeking Response to Subjective Memory Complaints in Older Adults: Toward a Conceptual Model

People with dementia and their family carers' satisfaction with a memory service: a qualitative evaluation generating quality indicators for dementia care

Quality-of-life assessment in dementia: the use of DEMQOL and DEMQOL-Proxy total scores