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 concern. 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 quantitative content analysis approach. Results Five 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 and v) Views on how to address unmet needs in dementia care. Dementia was commonly referred to as “ okuhuga ” or “okwebwayebwa” (also, oruhuzyo/ empugye / akahuriko) which translates as “mental disorientation”. 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 part of the aging process, while others attributed the cause of dementia to syphilis, cancer, allergy, old age, satanic powers, witchcraft, poor nutrition, or 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 Community members in southwestern Uganda largely identified dementia as a problem that comes with older age, and can identify key features of dementia presentation. Participants identified significant stressors affecting people with dementia and their caregivers, and reported that families and caregivers would benefit from education on the management of symptoms of dementia, and assistance in overcoming associated financial, social, and emotional burdens related to caretaking.

Prevalence of Severe Neurocognitive Impairment and Its Association with Socio-Demographics and Functionality Among Ugandan Older Persons: A Hospital-Based Study

“…50,51 Majority of the care for elders with neurocognitive disorders is by the caregivers, community, and village health teams whose perception do not promote adequate management. 9,[52][53][54] Thus, patients reaching the health facility late and mortality become inevitable during admission. 55 This study had limitations that should be taken into account while interpreting our findings.…”

“…8 Patients are taken to the hospital, especially when their functionality starts to decline, other than a fall in cognition which is considered a normal aging process by many caretakers. 9,10 In extreme cases, functional dependence leads to early mortality in older adults with neurocognitive disorders. 11 Nowadays, the number of older persons (aged 60 years and above) is increasing globally due to the improvement in medical care and services; 12 and Uganda is not an exception to the scenario.…”

Knowledge of dementia and dementia care in a cross-sectional sample of individuals living in rural and urban areas in KwaZulu-Natal, South Africa

“…Creating and improving knowledge of dementia is considered one of the facilitators of dementia risk reduction (WHO, 2017). This is because dementia awareness and knowledge are linked to early detection, diagnosis, and help-seeking in people with dementia (PWD) (Hindley et al, 2016;Khonje et al, 2015;Mkhonto & Hanssen, 2017;Mushi et al, 2014;Owokuhaisa et al, 2020). Sufficient knowledge about dementia includes recognising symptoms, knowledge of risk factors and causes, knowing how to seek appropriate information on self-treatments, and professional help available (Jorm, 2012).…”

“…In many Sub-Saharan African studies, dementia knowledge is considered limited or poor (Hindley et al, 2016;Khonje et al, 2015;Mkhonto & Hanssen, 2017;Mushi et al, 2014;Owokuhaisa et al, 2020). This is because participants from these studies could not recognise or understand the Western biomedical term dementia (Mkhonto & Hanssen, 2017;Mushi et al, 2014) and participants who adopt a socio-cultural understanding of dementia rather than a biomedical understanding of dementia as a neurodegenerative disorder, as defined in the Diagnostic and Statistical Manual of Mental Disorders (5th ed.…”

“…It is not unusual for African communities to endorse both Western and traditional notions of dementia, because knowledge of dementia symptoms, risk factors, and care usually varies according to personal and socio-cultural experiences, beliefs, and perceptions about the presentation of the disease (Chung, 2000;Conrad & Barker, 2010;Hindley et al, 2016). For example, some African studies reported that dementia was understood to be a natural part of ageing, a mental illness, and/or a medical disorder (Hindley et al, 2016;Khonje et al, 2015;Mkhonto & Hanssen, 2017;Owokuhaisa et al, 2020). While other studies reported the belief that dementia is the work of evil spirits, retribution from God (i.e., for past personal or family sins, not praying enough, not having sufficient faith to ward off evil spirits, or displeasing God), punishment from ancestors, and witchcraft (Cipriani & Borin, 2014;Hindley et al, 2016;Mkhonto & Hanssen, 2017;Mushi et al, 2014;Ndamba-Bandzouzi et al, 2014;Sayegh & Knight, 2012).…”