Family caregivers' perceptions of quality of dementia self-care in Wakiso district, Uganda.

INTRODUCTION

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.

METHODS

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.

RESULTS

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.

DISCUSSION

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.

HIGHLIGHTS

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.