Perceptions and experiences of dementia and its care in rural Kenya

Abstract

Objectives We aimed to explore the perceptions towards dementia and related care across three stakeholder groups in rural Kenya. Methods A total of 38 key stakeholders (carers of persons with dementia, health care providers and the general public) participated in focus group discussions. Additional five individual interviews were held with carers. Thematic analysis was used to analyse the data. Findings Across the three participant groups, a total of four themes were identified: (i) negative stereotypes of dementia, (ii) limited knowledge about dementia, (iii) diagnostic pathway and (iv) neglect and abuse. Conclusions We found a general lack of knowledge of dementia amongst family carers, healthcare professionals and the general public. The combination of poor awareness and ill-equipped healthcare systems leads to stigma manifested in the form of patchy diagnostic pathways, neglect and abuse. Local governments could take advantage of the existing family- and community-based systems to improve understanding of dementia nationally.

Experiences and practices of caregiving for older persons living with dementia in African countries: A qualitative scoping review

“…These social organizations overlap, and are related in terms of their structure and functions. Religious and traditional institutions have great potential for advancing dementia caregiving in Africa (Musyimi et al, 2021; Mansi, 2014; Mushi et al, 2014; Yusuf & Baiyewu, 2012). They have functioned in the intersections of early detection, counseling, spirituality, social support, community mobilization of resources, and interpretation of the cause of dementia in African communities.…”

“…At least 68% of the world’s dementia population will be from LMICs in 2050, and African people will account for about 14% of dementia cases in LMICs (Prince et al, 2015), increasing from 2.6% in 2015 (Klimova et al, 2016). Dementia is known to be one of the strong correlates of aging (Livingston et al, 2020; Irwin et al, 2018; LoGiudice & Watson, 2014), and the demographic transition in Africa will potentially contribute to the increased prevalence of dementia (Musyimi et al, 2021; World Health Organization, 2011).…”

Understanding dementia care pathways for policy development and service planning in Kenya

“…Dementia symptoms are commonly attributed to witchcraft (Musyimi et al, 2021). This results in seeking care from traditional and spiritual healers, upon onset of symptoms (all case vignettes).“…Mrs Chelimo's family may have tried herbal medicine as well as even going to church (faith healers) to seek pardon for the curse that the family might have assumed is the cause of dementia.” (case vignette 3)“…based on community advice such as the Mrs Bahati might have been demon possessed or cursed, seek the services of a faith healer to be prayed for since they regularly attend church.” (case vignette 2)“In an attempt to better the condition of their father, they may invite traditional healers to treat Mr. Dimba with traditional medicine as well as faith healers from church to pray for him in case they think that Mr. Dimba has been cursed or bewitched….” (case vignette 4)…”

“…The fear that comes with stigma surrounding dementia (Low and Purwaningrum, 2020) could lead to no action being taken to identify and alleviate the dementia-like symptoms – almost denying that there is a problem. Lack of awareness on dementia is also a contributing factor to no action being taken (Musyimi et al, 2021).…”

“…Each case vignette was independently reviewed by three members of the STRiDE Kenya team with a range of discipline and experience in dementia care, psychology and nursing. Using a narrative, they described the likely dementia care and support available to the person with dementia and the family carers (appendix1) while drawing evidence from the in-depth desk review developed by STRiDE Kenya team that aimed at mapping dementia care pathways in Kenya (Musyimi, Mutunga, et al, 2022). This approach has similarly been used by earlier researchers (Bieber et al, 2018; Muir, 2017).…”