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

Background: In order to analyze use of health services and identify sources of delays in accessing the right care for patients with Alzheimer’s disease and related dementias (AD/ADRD), understanding of care seeking pathways is needed. The objectives of this study were: (i) to explore pathways to hospital care for patients with AD/ADRD and (ii) to describe challenges experienced by the patients and their families while seeking health care. Methods: Using purposive sampling, 30-in-depth, semi-structured interviews were conducted among caregivers of elderly patients diagnosed with dementia from rural Southwestern, Uganda. Data was analyzed using ATLAS.Ti software. Results: There was variability in pathways to care from individual to individual. The points of care varied from one to four including; hospitals, clinics, places of worship and traditional healers with one to six point of care visits. Two broad themes were identified: (1) points of care choice and perceived care outcomes; (2) challenges encountered at various points of care. Most of the respondents reported use of hospitals at first and second visit to the health care point (53.3% and 67.9% respectively), but reduced to none at 5th and 6th encounters. Places of worship, clinics and traditional healer’s shrine received few patients but places of worship became more common from third point of care encounter to the sixth. Major improvements (58.1%) were observed on hospital use but little or no help with prayers, clinics and traditional healers. The challenges experienced with formal points of care focused on cost of prescribed drugs, weakening effect of the drugs, health workers’ rudeness, lack of skills to manage the condition, and lack of improvement in quality of life. Conclusions: Study findings indicate that caregivers and or families of patients with dementia go to different places both formal and informal care settings while seeking health care. However, hospital point of care was more frequent at first and second points of care visit while places of worship took the lead at subsequent visits. Although no specific pathway reported, most of them begin with hospital (formal) and end with non-formal. We recommend that health systems carry out public awareness on dementia.