Explanatory Models of Dementia among Caregivers of Elderly Persons with Dementia – Analysis of Secondary Data

Rising life expectancy is associated with an increased prevalence of chronic diseases like dementia. The prevalence of dementia is significantly higher in low- and middle-income countries. The public's awareness of dementia in India is low. Help-seeking is largely dependent on one’s socio-cultural perspective of a sickness episode and one’s beliefs about the aetiology, course, and outcome of the illness. Dementia is still not conceptualised as a health problem, and it is believed to be a consequence of normal ageing. So carers are not concerned about seeking help. We interviewed 35 carers of persons with dementia (as per ICD-10) using the Short Explanatory Model Interview (SEMI). We explored the explanatory models of dementia given by caregivers of people with dementia. Qualitative data analysis was done using ATLAS.ti. We identified four main themes that carers expressed, namely, I) Problems of the patient: Many caregivers reported that memory loss, behavioural problems, and impaired biological functioning were their main concerns. II) Cause of problem: caregivers expressed that psychosocial stress, ageing, and black magic were causes of dementia. III) Reason to visit and expectation: most caregivers consulted doctors due to the worsening of their relatives' problems, and they were advised by others to visit. They expected medicines, better treatment, and a cure from doctors, and IV) Outcome of problem: caregivers were worried about problems with appetite, memory loss, impaired verbal communication, difficulty at work, and their relatives going missing. Caregivers have the idea that their relative had some problem that involved the brain, but most of them attribute this to the consequences of ageing due to psychosocial factors like excessive stress, bad interpersonal relationships, life events, economic crises, and black magic. There is a need for an awareness-raising campaign for dementia in the community at large concerning its cause, symptoms, course, progression, and most importantly, locally available services.