A qualitative study on caregivers and patients perceptions about Alzheimer’s and related dementias in southwestern Uganda

Abstract

BackgroundIn the treatment and safe service delivery of each disease, it is very important to understand the perceptions of caregivers and patients where they are not well understood because different cultures, regions and ethnicities have different ways how they understand the concept therefore this study aimed at understanding how patients and caregivers perceive Alzheimer’s and related dementias and their coping strategies in south western Uganda.Methods A qualitative cross sectional study was conducted using purposive sampling and 18 and 12 caregivers and patients were recruited respectively where in-depth interviews were conducted and data was analyzed using ATLAS Ti software.Results Five broad themes were used from Kleinmans explanatory model from both 2 objectives which included perceived identity, causes, treatment, effects and coping strategies. Participants had different views about each category. A big number was able to identify the disease as forgetfulness and the perceived causes included physical, psychological, and witch craft and most of caregivers continued to say that this disease does not need treatment since the most cause of it is aging which is a natural process while treatment was only sought secondary after going to the health facility for another cause/disease. The effects on caregivers include strain financial constraint, poor health while patients complained of non-productivity, psychological/emotional torture and lack of independence. In the instance of coping strategies more caregivers had options of seeking help from relatives, community based organizations (CBO) while some had no option but to just believe God.Conclusion Study findings reveal that caregivers and patients of Alzheimer’s and related dementias have both positive and negative perceptions. The negative perceptions lie more on treatment options and these may affect service delivery and reduce patient’s life span when the right treatment is not thought. Therefore continuous community sensitization about the disease is needed more.

Exploring pathways to Hospital Care for Patients with Alzheimer’s disease and related dementias in rural South Western Uganda

“…The opting out of hospital use for non-formal care setting like places of religious worship was a consequence of several factors including knowledge gap on the disease. The study found that 76% of the caregivers attributed the disease to normal aging process, a scenario that has been reported in various studies including a parallel study done in the same area of Southwestern Uganda on caregivers and patients perceptions about Alzheimer's and related dementias [26]. Other studies have also documented this knowledge gap on the disease in other countries including the neibouring Tanzania [21] and the USA [27].…”

“…Also the rare manner in which symptoms of dementia presented to the caregivers for example bad dreams, hallucinations, irrational talks, etc., resembled demonic attacks [28], and so caused them opt for spiritual prayers or traditional healers. Such people's belief in spiritual healing has been reported in several countries both developed and developing world [26,29,30]. Similarly, the explosion of Pentecostal churches and other prayer warriors in sub-Saharan Africa or in populations of African descent has made religious healing one of the most popular interventions for psychiatric and neurologic disorders [28] and emotional support [31].…”

Exploring Pathways to Hospital Care for Patients with Alzheimer’s Disease and Related Dementias in Rural South Western Uganda

“…The opting out of hospital use for non-formal care setting like places of religious worship was a consequence of several factors including knowledge gap on the disease. The study found that 76% of the caregivers attributed the disease to normal aging process, a scenario that has been reported in various studies including a parallel study done in the same area of Southwestern Uganda on caregivers and patients perceptions about Alzheimer's and related dementias (Tumuhairwe et al, 2020). Other studies have also documented this knowledge gap on the disease in other countries including the neibouring Tanzania (Hindley et al, 2017) and the USA (Beard, 2004).…”

“…Also the rare manner in which symptoms of dementia presented to the caregivers for example bad dreams, hallucinations, irrational talks, etc., resembled demonic attacks (Uwakwe, 2000), and so caused them opt for spiritual prayers or traditional healers. Such people's belief in spiritual healing has been reported in several countries both developed and developing world (Charan et al, 2018, Hamilton et al, 2019, Tumuhairwe et al, 2020. Similarly, the explosion of Pentecostal churches and other prayer warriors in sub-Saharan Africa or in populations of African descent has made religious healing one of the most popular interventions for psychiatric and neurologic disorders (Uwakwe, 2000) and emotional support (Lynn et al, 2014).…”

“…Similarly, the explosion of Pentecostal churches and other prayer warriors in sub-Saharan Africa or in populations of African descent has made religious healing one of the most popular interventions for psychiatric and neurologic disorders (Uwakwe, 2000) and emotional support (Lynn et al, 2014). It has also been shown that religion and hence prayers becomes increasingly important in times of life-threatening illness not only in Uganda (Tumuhairwe et al, 2020) but also in developed world (Hamilton et al, 2019).…”