Older adults’ experience of neuropsychological assessments for dementia screening in South India: a qualitative study (original) (raw)
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Awareness and understanding of dementia in South Asians: A synthesis of qualitative evidence
Dementia
Background Despite a growing elderly South Asian population, little is known about the experience of diagnosis and care for those living with dementia. There have been a number of individual qualitative studies exploring the experiences of South Asian people living with dementia and their carers across different contexts. There has also been a growing interest in synthesizing qualitative research to systematically integrate qualitative evidence from multiple studies to tell us more about a topic at a more abstract level than single studies alone. The aim of this qualitative synthesis was to clearly identify the gaps in the literature and produce new insights regarding the knowledge and understanding of the attitudes, perceptions, and beliefs of the South Asian community about dementia. Methods Following a systematic search of the literature, included qualitative studies were assessed by two independent reviewers for methodological quality. Data were extracted and pooled using the Jo...
Cureus
Objective: The present study aimed to validate a questionnaire and measure the previous knowledge, attitude, and practice (KAP) of the general population and healthcare professionals regarding the debilitating disorder of dementia. Design: A questionnaire including 27 items was compiled by the authors and was circulated via the online platform. Setting: A questionnaire-based survey was conducted using the online modality. Participants: A convenience sampling method was used to recruit participants aged 18 and above from all walks of life. Measurements: Test-retest reliability, item analysis, and Cronbach's alpha were calculated for the compiled questionnaire. The responses of the participants were assessed using descriptive statistics and the chisquare test. Results: A total of 503 responses were collected. The internal consistency (Cronbach's alpha=0.70) was acceptable and the test-retest reliability (0.823) was good. Eighty-one percent (408/503) of participants had heard the word dementia. Seven percent (27/408) of the participants who had heard the word dementia did not have any knowledge about the symptoms of dementia. Thirty-three percent (136/408) of participants believed that dementia could not be prevented. Almost half, i.e., 46% (187/408) of participants, considered dementia as a normal part of aging. Conclusions: The present study provides a fully validated questionnaire, which could prove helpful in research as it permits generating high-quality data and reducing measurement error. Knowledge of dementia among the general participants seems to be moderate and prompts towards the development of advocacy programs.
Frontiers in Neurology
Background: Patient and public involvement (PPI) is an active partnership between the public and researchers in the research process. In dementia research, PPI ensures that the perspectives of the person with “lived experience” of dementia are considered. To date, in many lower- and middle-income countries (LMIC), where dementia research is still developing, PPI is not well-known nor regularly undertaken. Thus, here, we describe PPI activities undertaken in seven research sites across South Asia as exemplars of introducing PPI into dementia research for the first time.Objective: Through a range of PPI exemplar activities, our objectives were to: (1) inform the feasibility of a dementia-related study; and (2) develop capacity and capability for PPI for dementia research in South Asia.Methods: Our approach had two parts. Part 1 involved co-developing new PPI groups at seven clinical research sites in India, Pakistan and Bangladesh to undertake different PPI activities. Mapping onto di...
The Experiences of People with Dementia and Their Caregivers in Dementia Diagnosis
Journal of Alzheimer's disease : JAD, 2017
People can live well with dementia if they are diagnosed early and receive early interventions and appropriate dementia management and care. However, dementia is currently under-detected and under-diagnosed. The diagnosis rate is around 50% only in higher-income countries and 5-10% only in low- and middle-income countries. Studies on consumers' experiences in engaging in dementia diagnosis in a socio-cultural context are much needed in order to generate research evidence to inform person-centered dementia care and services. The aim of the study was to understand the experiences of people with dementia and their caregivers in engaging in dementia diagnosis. An interpretative study design informed by Gadamer's hermeneutic principles was applied to the present study to achieve the aim of the study. The study was strengthened by applying a social ecological framework to the study design. In total, 23 participants contributed to the interviews or focus group. Thematic analysis wa...
Knowledge of dementia among South Asian (Indian) older people in Manchester, UK
International Journal of Geriatric Psychiatry, 2007
Objectives The aim of this study was to examine knowledge of dementia in South Asian older people, as compared with Caucasian older people. Methods Attendees, not known to suffer from dementia, of one South Asian and two predominantly Caucasian day centres for older people in Manchester (UK) were asked to complete the Dementia Knowledge Questionnaire (DKQ). The DKQ was translated into Gujarathi and Urdu by the professional translators. Results One hundred and ninety-one DKQs from Indian and 55 DKQs from Caucasian (white UK/Irish/European) older people were included in the analyses. Knowledge of dementia was poor in both Indian and Caucasian older people, especially so in the former. The median (25th-75th percentile) total DKQ scores were 3 (2-5) in Indians and 6 (3.5-9) in Caucasians (p < 0.001). Indian older people showed significantly less knowledge about basic aspects (p < 0.001) and epidemiology (p < 0.001) of dementia when compared to Caucasian older people. Both groups faired equally badly on questions about aetiology (p ¼ 0.91) and symptomatology (p ¼ 0.66). Indian older people were less aware of personality, reasoning, and speech being the affected in dementia (p < 0.001, p < 0.001 and p ¼ 0.04, respectively). Conclusion Indian older people in Manchester (UK) do not seem to have sufficient knowledge about dementia, which may be one of the reasons for their relative absence in the local dementia treatment clinics.
International Journal of Geriatric Psychiatry, 2000
The 10/66 Dementia Research Group has been formed to promote good-quality, internationally comparable research into dementia in developing countries through active research collaboration. In this position paper, we review existing research into dementia prevalence in developing regions of the world. Seven methodologically robust studies were identi®ed. The prevalence of dementia, age-adjusted to the age structure of the Kerala population, ranged from 1.3% to 5.3% for all those aged 60 or over and from 1.7% to 5.2% for all those aged 65 and over. Two studies, from Ibadan, Nigeria and Ballabgarh, India, reported strikingly low prevalence ®gures. The reported prevalence for most studies was somewhat lower than the consistent ®gures for Europe reported by the EURODEM concerted action. Based on critical review of the literature, and on the practical research experience of members of the 10/66 group, recommendations have been made for procedure in the following areas: age limits for inclusion in dementia surveys, age ascertainment, sampling, scope for incidence studies, functional assessment and culture-and education-fair dementia diagnosis.
Community Screening of Probable Dementia at Primary Care Center in Western India: A Pilot Project
Journal of Neurosciences in Rural Practice
Introduction Timely detecting dementia is an important goal of clinicians and public health professionals alike for better management and prevention of complications. Community screening of dementia could be a powerful strategy. Facilities for dementia screening at primary care level are virtually nonexistent and are a prominent implementation gap. Hence, a study was done to assess the feasibility of dementia screening at primary care using General Practitioner Assessment of Cognition (GPCoG) scale among older adults with subjective memory complaints. It was further aimed to assess the frequency of cardiovascular risk factors in those who met screening criteria for cognitive impairment. Materials and Methods Older adults coming to three urban primary care centers in western India for screening of noncommunicable diseases such as diabetes and hypertension (opportunistic screening) with subjective memory complaints were enrolled and screened for dementia using GPCoG. A Mini-Mental Sta...
Journal of Family Medicine and Primary Care, 2021
Objective: Cognitive screening in elderly patients receiving treatment for chronic medical conditions in a busy outpatient clinical setting is crucial to detect dementia at an earlier stage. Although Hindi Mini-Mental State Examination (HMSE) is an established screening tool for the geriatric population in India, but cannot be administered with the informant. Our study aims to compare two screening instruments, Informant based-Eight-item Interview to Differentiate Aging and Dementia (AD8) and HMSE among elderly patients attending medical outpatient service (OPD) in a tertiary care hospital. Method: A total of 776 subjects aged ≥65 years and receiving treatment from medicine OPD in a tertiary care hospital were screened for dementia using AD8 and HMSE. The clinical diagnosis was established after detailed clinical assessment using ICD-10 criterion. Sensitivity and specificity were calculated for both screening tools and ROC curves were plotted considering ICD-10 diagnosis as the gold standard. Results: Comparison of receiver operating characteristic (ROC) curves showed that HMSE (AUC = 0.77) were better than AD8 (AUC = 0.61) in detecting dementia. Although increasing the cutoff value of AD8 from a recommended score of ≥2 to ≥3 improved sensitivity from 35% to 48.9%, high false-positive rate limited its utility as a cognitive screening tool. Conclusion: Although AD8 is easy to use and quickly administered with either patient or informant, it does not seem to be a suitable cognitive screening test for Indian elderly with chronic medical disorders. HMSE at a cutoff score of ≤23 is able to find out dementia among geriatric patients in a busy medical setting.
Dementia Screening in Low Education Populations: Results from the Kerala-Einstein Study
Alzheimer's & Dementia, 2011
OBJECTIVES: To develop and validate a picture-based memory impairment screen (PMIS) for the detection of dementia. DESIGN: Cross-sectional. SETTING: Outpatient clinics, Baby Memorial Hospital, Kozhikode city in the southern Indian state of Kerala. PARTICIPANTS: Three hundred four community-residing adults aged 55 to 94 with a mean education level of 8 years; 65 were diagnosed with dementia. MEASUREMENTS: PMIS: a culture-fair picture-based cognitive screen designed to be administered by nonspecialists. Diagnostic accuracy estimates (sensitivity, specificity, positive and negative predictive power) of PMIS cut-scores in detecting dementia (range 0-8). RESULTS: PMIS scores were worse in participants with dementia (1.5) than in controls (7.7, P < .001). At the optimal cut-score of 5, PMIS had a sensitivity of 95.4% (95% confidence interval (CI) = 90.3-100.0%) and a specificity of 99.2% (95% CI = 98.0-100.0%) for detecting dementia. In the 167 participants with <10 years of education, PMIS scores of five or less had a sensitivity of 97.8% (95% CI = 93.6-100.0%) and specificity of 99.2% (95% CI = 97.6-100.0%). The PMIS had better specificity than the Mini-Mental State Examination in detecting dementia, especially in older adults with low education. CONCLUSION: The PMIS is a brief and reliable screen for dementia in elderly populations with variable literacy rates. J Am Geriatr Soc 2012.