Buwembo Dennis Rogers, Kiguli Juliet, Nakasujja Noeline, Makumbi Fredrick Edward, Sajatovic Martha, Meyer Kylie, Lwere Kamada, Gumikirza-Onoria Joy Louise, Kagaayi Joseph, Ddaaki William, Mukasa Mark Kaddu
Brain Health Training Program, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda.
Department of Community Health and Behavioral Sciences, School of Public Health, College of Health Sciences, Makerere University, Kampala, Uganda.
Alzheimers Dement. 2025 Jul;21(7):e70510. doi: 10.1002/alz.70510.
In Sub-Saharan Africa, most people with dementia are cared for in the home setting (dementia self-care) with hardly any support from the formal health and social care system. The study explored family caregivers' perceptions of quality of dementia self-care.
A descriptive-exploratory qualitative study design was used. Data were collected through four focus group discussions with 48 family caregivers of older people with dementia, recruited from four villages of the Wakiso district in Uganda.
Five themes emerged: (1) patience and understanding; (2) maintaining hygiene and cleanliness; (3) constant supervision and safety precautions; (4) personalized care by understanding individual preferences, daily routines, and personal space; (5) respect and dignity.
Family caregivers' perceptions of quality of dementia self-care are generally positive, encompassing elements of person-centered care. Caregiver messages should be strengthened by incorporating support with instrumental activities of daily living and how to avoid harmful or potentially harmful caregiver behaviors.
Family caregivers' perceptions of dementia self-care are critical, especially in contexts in which knowledge is limited, and myths, misconceptions, and stigma prevail. Caregivers' views emphasize the importance of valuing care recipients, understanding their preferences, and tailoring care accordingly. These perceptions prioritize ensuring safety and supporting basic daily activities, with minimal attention to instrumental activities. Caregivers hardly reflected on their behaviors that could potentially harm the care recipients.
在撒哈拉以南非洲地区，大多数痴呆症患者在家中接受照料（痴呆症自我照料），几乎没有得到正规卫生和社会护理系统的任何支持。本研究探讨了家庭照料者对痴呆症自我照料质量的看法。
采用描述性探索性定性研究设计。通过与48名痴呆症老年人的家庭照料者进行四次焦点小组讨论收集数据，这些照料者来自乌干达瓦基索区的四个村庄。
出现了五个主题：（1）耐心与理解；（2）保持卫生与清洁；（3）持续监督与安全预防措施；（4）通过了解个人偏好、日常活动和个人空间提供个性化照料；（5）尊重与尊严。
家庭照料者对痴呆症自我照料质量的看法总体上是积极的，包含了以患者为中心的照料要素。应通过结合日常生活工具性活动方面的支持以及如何避免有害或潜在有害的照料者行为来强化照料者传达的信息。
家庭照料者对痴呆症自我照料的看法至关重要，尤其是在知识有限、存在误解、错误观念和污名化现象盛行的情况下。照料者的观点强调了重视受照料者、了解他们的偏好并据此调整照料的重要性。这些看法将确保安全和支持基本日常活动列为优先事项，而对工具性活动关注极少。照料者几乎没有反思过他们可能会对受照料者造成潜在伤害的行为。
