Abstract
PURPOSE: The burden of Alzheimer's dementia greatly impacts patients and their immediate families. Studies on the perspective of caretakers regarding nutrition in patients with Alzheimer's disease (AD) dementia are lacking. Yet this information is needed to guide clinical care for patients with dementia. The study explored caretakers' perspective on nutritional challenges faced by patients with Alzheimer's disease and related Dementias at Butabika National Referral Hospital. METHODS: We conducted 20 in-depth interviews and 2 focus group discussions with 20 health workers and 16 caregivers, respectively. The focus group discussions and in-depth interviews were audio-recorded and transcribed. Analysis was conducted using a thematic, constant comparative approach with an emphasis on dominant themes. RESULTS: Participants had a mean age of 37 in the range (27-44) years. Seventeen (47%) of them were males. Their duration of Care for Dementia to patients was in the range (2-7) years. The highest level of education was a bachelor's degree and the primary level was the lowest. Thirteen (35%) were married and twenty-three (65%) were not, and they either survived on salaries or wages as a source of income. The key emerging issues were 1) hindrances to nutritional care in dementia, 2). Factors leading to inadequate nutrition among people with dementia and 3). Recommendations to improve nutrition needs. CONCLUSION: Caretakers experience challenges ranging from psychotic manifestations of a patient to hindrances in the provision of nutritional care. A better understanding of their experience is essential for the development of interventions to help the family members, health workers and other care takers promote good nutrition in patients with Alzheimer's dementia. A clear referral system should be established to prevent overcrowding of patients at a mental national referral hospital to ensure adequate timely nutritional support to those admitted. Capacity building programs should continue to address the knowledge gap in nutritional requirements of patients with Alzheimer's dementia.