The prevalence of dementia is increasing rapidly, specifically in low and middle income countries (LAMIC) due to demographic aging. Help seeking is delayed and usually sought at an advanced stage of illness and many are yet to receive a formal diagnosis. We interviewed 35 caregivers of persons with Dementia (as per ICD-10) using a semi-structured questionnaire, the Short Explanatory Model Interview (SEMI). We explored the pathways taken by caregivers of people with dementia en route to a tertiary care centre and the interactions they had with different health care providers. Qualitative data analysis was done using ATLAS.ti. We identified three major pathways: I) The Neuropsychiatric pathway II) The General Practitioner pathway and III) The Non-cohesive pathway. In general, the caregivers were poorly informed about the illness details such as diagnosis, course and outcome. Neurologists communicated the diagnosis of 'Dementia' more frequently. When information was made available, the caregivers were satisfied with proper information about illness and with at least, partial improvement of symptoms. There is a need for increasing the awareness of dementia in community at large. Health services and systems that address this important public health problem need strengthening. Sensitization and training of primary care physician and staff to identify dementia at an early stage are the need of the hour.
Keywords: Dementia; Elderly; India; Pathways to care.
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