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. There was one broader theme captured: points of care choice with four broader categories: hospitals, clinics, places of religious worship and traditional healers’ shrines, each with its facilitating factors, outcomes and challenges encountered. Most of the respondents reported use of hospitals at first and second visit to the health care point but places of religious worship became more common from third to sixth health care encounter.. 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 lack and cost of prescribed drugs, weakening effect of the drugs, lack of skills to manage the condition, and lack of improvement in quality of life. These challenges together with knowledge gap about the disease and belief in spiritual healing facilitated the shift from formal to informal health care pathways, more particularly the places of religious worship. Conclusions: Our study findings indicate that caregivers/families of patients with dementia went to different places both formal and informal care settings while seeking health care. However, hospital point of care was more frequent at initial health care visits 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. Key words: Alzheimer’s disease and related dementias, caregiver, dementia, pathways to health care and Southwestern 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.