“They are perceived to be witches,and some are killed”: Community perceptions of elderly people living with dementia in Kilifi,Kenya

Abstract

Background

The risk of dementia, including the most common form, Alzheimer's disease, is forecasted to increase in low- and middle-income countries due to longer lifespans and the rising prevalence of non-communicable diseases. However, little research has been conducted on the knowledge and perceptions about dementia in rural communities in Kenya.

Objective

To explore the community's knowledge, attitudes, and perceptions about dementia in Kilifi County, a resource constrained rural coastal area in Kenya.

Methods

We conducted an ethnographic study comprising five focused group discussions (n = 35, each with 7–8 people) and 25 key informant interviews with various stakeholders from Kilifi County. The interviews and discussions were recorded, transcribed verbatim and thematically analyzed.

Results

There was a general lack of knowledge about dementia by community members. People suspected to have dementia were labeled using stigmatizing and derogatory words such as “neurologically deficient”, “crazy”, or “wendawazimu” [mad person]. Dementia was also associated with normal aging. Others associated neurodegenerative behaviors associated with dementia to witchcraft or curses. This led to individuals suspected to have dementia being isolated from the community, neglected, dispossessed assets, killed or denied medical care.

Conclusions

Dementia is not well understood in Kilifi County, Kenya. People with dementia are stigmatized, neglected and socially excluded from community. Our results could be leveraged by the Kenyan government, the healthcare system, and communities to develop policies and strategies for protecting elderly people with dementia and improving their care, especially in rural areas.