Background: Research from the 10/66 group has indicated that dementia is to a large extent a hidden problem. Although the syndrome is widely recognised, it is considered to be a normal part of ageing, not a medical condition; families do not seek help and primary care doctors are rarely involved. In India, community health workers, who visited all homes in their area to provide preventive maternal and child heath care were aware of cases in the community, and considered this to be an important source of family burden (Patel and Prince, 2001). If we aim to offer targeted interventions to people with dementia and their families, we need first to develop a simple, inexpensive method to identify cases in the community.
Method: The 10/66 Dementia Research Group has developed a half day manualised training programme for community health workers, designed to sensitize them to the characteristic features, symptoms and presentations of dementia in the community. The effectiveness of this training, and the subsequent use of community health workers as a practicable case finding method has been evaluated in Thrissur and Vellore in India, and in Botucatu in Brazil.
Conclusions: We have established that the community health worker Casefinder method may be a simple cost-effective approach to identifying those with dementia in the community, where levels of helpseeking from formal healthcare are low. One half to two-thirds of those identified typically have dementia, with others having other chronic conditions and much unmet need. However, the sensitivity of this approach (as assessed in the Vellore study) may be low, with many dementia cases missed.
Method: After two and a half hours of formal training, community-based Anganwadi workers attached to the Integrated Child Development Scheme in rural Kerala were asked to identify possible cases of dementia from the community they served. Diagnoses were then verified by a senior local psychiatrist with clinical and research interests in old age psychiatry.
Results: The community health workers identified 51 out of 1979 over 60 year old residents (a prevalence of 2.6%) as suspected cases of dementia. Following the psychiatrist's assessment, 33 met DSM IV criteria for dementia. The majority of confirmed cases were of the Alzheimer's Disease sub-type. Most 'non-cases' were found to be suffering from other major psychiatric disorders, with substantial unmet need. The positive predictive value of the community health workers informal screening was 64.7%.
Method: Twenty-five community health workers were trained to identify dementia cases among 2,222 people aged 65 years or over in Piraju, a Brazilian town with 27,871 inhabitants. After the training, the health workers prepared a list of possible cases that afterwards were clinically evaluated by an experienced psychiatrist, according to DSM-IV criteria and the Clinical Dementia Rating.
Results: From the 72 cases that were clinically assessed, 45 met the DSM-IV diagnostic criteria for dementia. Therefore, the positive predictive value of this dementia case finding method was 62.5%; the estimated prevalence of dementia was 2%. Most of the confirmed cases met clinical criteria for Alzheimer's Disease and vascular dementia.
Method: Four community health workers received over 2 hours of training in the diagnosis and management of dementia. They were asked to nominate people with and without dementia residing within their catchment area. Their diagnosis was compared against a detailed assessment by research workers, conducting the 10/66 cross-sectional dementia survey in the same catchment area. This enabled us, in this evaluation, to estimate the sensitivity and specificity, as well as the positive predictive value of the casefinder method.
Results: One thousand participants over the age of 65 were recruited for the study. The community health workers identified 9 older people as having dementia. This was compared against an education adjusted diagnosis of dementia made in accordance with the 10/66 dementia research group protocol. The sensitivity and specificity of the community health worker diagnosis was 3.8% (95% CI 1.5, 9.3) and 99.4% (95% CI 98.7, 99.7) respectively. The positive predictive value was 44.4% (95% CI 18.7, 73.8). Those with dementia who were correctly diagnosed by the community health workers and those who condition was missed did not differ significantly on socio-demographic and clinical variables.
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