Behavioral and psycho-social impairments among people living with dementia and their management by caregivers in South-Western Uganda: a qualitative study

Abstract

Objectives

This study aimed to explore the behavioral and social impairments among people living with dementia (PLWD) in rural southwestern Uganda. It also explored the burden of caregivers for people living with dementia.

Methods

This was a qualitative study among people living with dementia and their caregivers. We consecutively enrolled 30 people living with dementia with their caregivers from their homes. We conducted in-depth interviews using a semi-structured interview guide. We did a thematic content analysis.

Results

The themes under-reported behavioral impairment were; difficulty in personal care, physical inactivity, and impaired judgment. Under the social and cognitive impairment theme, there was the failure to be in social gatherings like church, community groups, and markets. Under the caregivers’ role, their burden included managing behavioral, social, and cognitive impairments of PLWD. Although caregivers were committed to caring for PLWDs, this required sacrificing time at the expense of income-generating activities.

Conclusions

Dementia hinders the behavioral and social aspects of the affected people. Caregivers are highly burdened to care for PLWD. Strategies to minimize caregivers’ burden while caring for people living with dementia are recommended.

Keywords:

• Alzheimer’s disease
• dementia
• behavioral impairment
• social impairment
• caregivers
• burden
• Uganda

Acknowledgements

We thank our research participants for willingly participating in the study. We also thank the research assistants, Nuwagira Gabriel and Ainomugisha Frankline who helped with data collection. We acknowledge the management and the health workers at ROTOM health centre and Heal medical centre for the assistance they offered during data collection.

Consent for publication

Written permission to publish the findings was sought from all participants, who were assured of anonymity and confidentiality in reporting.

Disclosure statement

The authors declare that they have no competing interests.

Ethical considerations

Ethical approval was obtained from the Research Ethics Committee of Mbarara University of Science and Technology (#MUST-2021-324). Clearance to conduct the study in Uganda was obtained from Uganda National Council for Science and Technology. Administrative approvals were obtained from the district health officers of the Rubanda and Rukiga districts and in-charges of ROTOM and Heal Medical Centre. Participants gave written informed consent to participate in the study with a signature or thumbprint. Caregivers or relatives consented on behalf of PLWD whose cognition was judged to have deteriorated. They were informed about their right to refuse to participate without any effect on the services they were getting from ROTOM and or Heal Medical centre. We ensured privacy and confidentiality by conducting the interviews in private and allocating non-identifiable field codes to each participant.

Authors’ contributions

Conception and design: IA, CKK, VM, AG, EKW, ZMT, and CO; Data collection and its coordination: IA, CKK, and VM; Formal analysis and data cleaning: IA, CKK, and VM; Initial draft: IA and VM; Review of the manuscript: CKK, AG, EKW, ZMT, and CO. The final version of the manuscript was approved by all authors.

Availability of data and materials

The full dataset generated and analyzed during the current study is not publicly available to maintain the privacy of the individuals interviewed during this study. De-identified data can be made available from the corresponding author upon reasonable request.

Additional information

Funding

Research reported in this publication was supported by the Fogarty International Centre (FIC) of the National Institutes of Health, the Department of State’s Office of the U.S. Global AIDS Coordinator and Health Diplomacy (S/GAC), and the President’s Emergency Plan for AIDS Relief (PEPFAR) under Award Number R25TW011210. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.