Community perceptions about dementia in southwestern Uganda

Abstract

Background With the increasing number of people surviving into older age in Africa, dementia is becoming a public health problem. Understanding the social dynamics of dementia in resource-limited settings is critical for developing effective interventions. We explored community perceptions about people with dementia in southwestern Uganda. Methods Fifty-nine individuals (aged 19-85 years, 56% female) participated in seven focus group discussions. In addition, 22 individual in-depth interviews were conducted among individuals (aged 22-84 years, 36% female). Both interviews and focus group discussions were audio recorded, transcribed verbatim, and evaluated using a content analysis approach. Results Four themes were generated during content analysis: i) Labeling of the illness, ii) Presentation of the person with dementia, iii) Causation, iv) Impact of the disease on people with dementia and their caregivers. Dementia was commonly referred to as okuhuga” (also, oruhuzyo/ empugye / akahuriko) which translates as “mental retardation”. The participants reported that most people with dementia presented with forgetfulness, defecating and urinating on themselves, wandering away from home, going out naked, and picking up garbage. Some participants perceived memory problems as a normal aging process, while others attributed the cause of dementia to syphilis, cancer, allergy, old age, satanic powers, witchcraft, poor nutrition, and life stress. Participants reported multiple sources of stress for caregivers of people with dementia, including financial, social, and emotional burdens. Finally, participants suggested that community and governmental organizations should be involved in meeting the needs of people with dementia and their caregivers. Conclusions Communities in southwestern Uganda identified dementia as a problem that comes with advanced age, have partial knowledge about the presentation and causes of dementia, and identify significant stressors affecting people with dementia and their caregivers. Families and caregivers would benefit from more education on causes of dementia, management of symptoms, and assistance in overcoming associated financial, social, and emotional burdens.

Lay Health Workers in Community-based Care and Management of Dementia: a ‘Pre’ and ‘Post’ Pilot Intervention Study in Southwestern Uganda

“…Our ndings that early signs of dementia are confused with superstitious beliefs such as witchcraft is aligned with other dementia studies in southwestern Uganda, Tanzania and South Africa [34][35][36]. Notable, however, during the interviews was an obvious level of discomfort by the participants when narrating their experiences during the implementation phase.…”