Caring for people with dementia in rural Uganda: qualitative study of caregiving burden experienced by informal and formal caregivers

Background The rising incidence of Alzheimer’s disease among older-age adults worldwide has been accompanied by an increase in caregiving burden. Limited work has examined the lived experiences of both formal and informal caregivers of people living with dementia in low-income countries. Methods We conducted one-on-one, in-depth qualitative interviews with a purposive sample of 10 informal caregivers and 5 formal caregivers of people living with dementia in Mbarara, Uganda. They were interviewed about their experiences caring for people with dementia until thematic saturation was reached. All interviews were audio recorded, transcribed into English, and thematically analysed. Results Two primary themes emerged from the data: patient factors influencing caregiving burden (problematic behaviours, such as wandering and aggression) and patient physical health and cognitive deterioration (namely, loss of memory and incontinence). Psychosocial and economic aspects of caregiving burden included financial costs, family conflicts, anxiety, stigma, and substance misuse. Conclusions Both formal and informal caregivers of people living with dementia experience physical, financial, and psychological stressors. Interventions aimed at reducing these stressors would benefit caregivers as well as improve quality of care for people living with dementia.

While caregiving burden has been studied extensively in high-income countries, there is paucity of information about caregivers' experiences in LMICs [10][11][12][13], particularly in rural areas of Africa where health systems for management of people with ADRD have not been developed [6,7,[13][14][15].
Behavioural symptoms (e.g., agitation, wandering, and calling out repeatedly) are commonly exhibited by people with ADRD in developing countries [14]. In addition, caregivers whose patients are unable to perform activities of daily living may experience financial constraints, and both emotional and physical burden [16][17][18][19]. Little research has explored the burden and lived experiences of both formal and informal caregivers of people living with ADRD in Africa. In this study, we define formal caregivers as healthcare providers (e.g., nurses, personal support workers, rehabilitation specialists, and physicians) who are paid to provide care [20,21], while informal caregivers include all those who provide caregiving unpaid (e.g., relatives, friends, and family members) [22,23]. The aim of this phenomenological study was to explore the burden of care and experiences of both formal and informal caregivers of people living with ADRD in rural Uganda.

Study design
We conducted a qualitative study using a phenomenological approach, exploring caregivers' lived experiences and using the data to understand the phenomena experienced. [24,25]. Similar to previously published phenomenological studies [26,27], we used a qualitative interview guide that included questions exploring the care burden experiences of both formal and informal caregivers. Two similarly-worded interview guides were used, with one designated for formal caregivers and one designated for informal caregivers. The interview guide for informal caregivers was translated into Runyankore-Rukiga, the local language of the region. The interview guide for formal caregivers was written in English because health care providers in the study setting communicate in English, the official national language.

Study setting
The study was conducted at Reach One Touch One Ministries (ROTOM) Medical Centre in Rukiga District of southwestern Uganda. ROTOM is a 'not-for-profit' non-governmental charity organisation with a medical centre that offers specialised care for the older-age people. At the time of the study, the facility had about 350 older-age people under their care. ROTOM offers a variety of services, including provision of food/clothing and building psycho-social groups that meet regularly at fellowship centres dedicated to ensure that older-age persons live with dignity.

Study participants and recruitment
Using purposive sampling, we selected five formal caregivers and ten informal caregivers at ROTOM. Selection of formal caregivers was based on their roles and responsibilities, years of service in providing care for people with ADRD, and training while that of informal caregivers was based on the random choice using the list of caregivers provided by the ROTOM staff. ROTOM has 'fellowship centres' where informal caregivers regularly meet. Only those who consented to participant were included in the study. Caregivers were interviewed until thematic saturation was achieved. Saturation was achieved more quickly in the sample of formal caregivers due to their more accurate reporting and efficient interviewing, as well as their structured working conditions.
To ensure comprehension and full awareness of the content, we collected oral and written informed consent from the participants. Participants who did not know how to read and write were permitted to indicate consent with a fingerprint. Each participant was interviewed in a private and quiet setting.
Ethical approval for the study was given by the Mbarara University of Science and Technology Research Ethics Committee (MUST-REC). Consistent with national guidelines, we obtained clearance to conduct the study from the Uganda National Council for Science and Technology (UNSCT) and the Research Secretariat in the President's Office.

Data collection
We collected data on the sociodemographic characteristics of study participants. Semi-structured interviews were guided by the interview guide (Additional file 1). Formal caregivers were interviewed in English at ROTOM, while informal caregivers were interviewed in Runyankore-Rukiga at or near their homes. All interviews were audio recorded and supplemented with field notes. At the end of the interview, consistent with local etiquette and custom, depending on the distance travelled and profession, caregivers received Ugandan Shillings 20,000 to 80,000 (equivalent to $5 to $20) as a study incentive (compensation for time and transport). The study was conducted between December 2018 and January 2019.

Data management and analysis
Data were transcribed verbatim by the research assistants and compared with the audio recordings to verify fidelity of the transcription. The transcripts in Ruyankore-Rukiga were then translated into English by an independent translator. Any discrepancies in the translation were discussed and amended accordingly.
Two authors (HEA and GZR) independently read through the transcripts and developed codes and categories based on themes that emerged from the data. Initial coding was done by a single author (HEA), and then the codes were discussed with the other co-authors for consensus. A codebook was then developed and used to complete the coding. Two main themes emerged from our results (patient factors influencing caregivers' burden and psycho-social-economic aspects of caregiving burden). Correspondingly, we came up with subthemes, categories and selected quotations from both formal and informal caregivers to support our findings. Only three subthemes (cognitive deterioration, physical burden and financial-social burden) overlapped between the two categories of caregivers and the rest two e.g., psychological and problematic behaviour were experienced by informal caregivers only. Discussions and conclusions in this study were based on subthemes, categories and quotations.

Results
A total of 15 in-depth interviews were conducted (5 with formal caregivers and 10 with informal caregivers). On average, formal caregivers had 6 years of caring for patients with ADRD while informal caregivers had 5.2 years of experience (Table 1). Codes, categories and themes generated from formal and informal caregivers yielded two major themes, and a number of subthemes ( Table   2).

Theme 1: Patient factors influencing caregiving burden
The first dominant theme included a variety of factors that were associated with caregiving burden.
Within this theme, two major subthemes included the patients' problematic behaviours, and the patients' physical health and cognitive deterioration. For ease of exposition, below and thereafter we refer to the subjects of caregiving as "patients" (with the understanding that they are formally defined as "patients" only for the formal caregivers).

Problematic behaviour
None of the formal caregivers expressed concerns about their patients' problematic behaviours.
However, informal caregivers consistently described difficulties managing problematic behaviours, e.g., confabulation, wandering and aggression as described by one informal caregiver in reference to his mother: "My mother says things that aren't true and it's frustrating for us. She tells people how we don't feed her, and steal her items including money. This kind of behaviour makes my family and I angry at her.
We feel that we do our best for her and yet, we are not appreciated." (47 year-old male caring for his mother) Informal caregivers also explained how caring for patients with dementia requires involvement from many family members so as to avert potential wandering behaviour. As described by one informal caregiver: "My father escaped from home. He wandered in places that we didn't know. In the process, he was hit by a speeding motor bike and they called us to rescue him, which was very distressing for us as a

He's very abusive and attacks everyone with all sorts of abusive words." (34 year-old female proving care for her father-in-law)
Beyond verbally abusive behaviour, physically abusive behaviour was also described by many informal caregivers: "My mother was given a new mattress and pair of bedsheets by ROTOM staff. The following day, we found that she had sliced the mattress into pieces and the bedsheets as well. Her plan for the bedsheets was to make several pieces as tablecloths. When I asked her why she did that, she abusively reminded me that both the mattress and bedsheets were her property and that she had a right to use them the way she wanted." (63 year-old male providing care for his mother)

Physical and cognitive deterioration
Both formal and informal caregivers reported difficulty managing their patients' physical and cognitive deterioration --namely, bowel/bladder incontinence, loss of memory, and physical immobility.
"She wets herself and smears faeces and urine on the walls of the house. I have been forced to buy pampers and soap more often to clean her. It's costly and not easy for me." (47-year-old male providing care for his mother) "Sometimes you have a patient in the diagnosis room or are administering treatment, and he/she asks for permission to go and ease him/her self, and it happens within a short time that the whole place is wet or soiled" (37-year-old male formal caregiver with 7 years' experience of providing care) Informal caregivers described how their patients had lost memory, causing them to frequently wander and impose significant worry among family members: "My mother went out looking for her married children. She lost her way and spent a night in the banana plantation; this was tough for us as a family, because we spent the whole night searching for her." (52-year-old female providing care for her mother) Patients' memory losses imposed different types of burden among formal caregivers. Formal caregivers expressed frustration with patients whose memory loss caused them to be nonadherent to medication or who could not provide reliable histories about presenting complaints. For example: Physical mobility needs also imposed significant burden on caregivers, because patients frequently needed support to move from one location to another. One informal caregiver described her experiences thusly: "My mother needs support to move from one place to another.  Caregivers' narratives also identified a variety of psychosocial and economic aspects to their caregiving burden. We identified three subthemes: (1) physical burden, such as lower back pain and physical exhaustion; (2) financial and social burden, due to excessive costs (e.g., transportation, diapers and bedding), social isolation, family conflict; and (3) psychological burden, resulting from stigma, hypervigilance and substance use.

Physical burden
Both formal and informal caregivers stated that caring for people with dementia affected their physical well-being. Caregivers described that manually lifting patients from one place to another, both in the hospital and at home, involved repetitive use (and potential strain) of the lower back.
Formal caregivers generally engaged in these behaviours as a matter of professionalism. As described by one formal caregiver:

father-in-law)
Most informal caregivers described how their caregiving responsibilities required them to discontinue full time employment; their social lives also became significantly circumscribed due to their need to remain confined at home for patient monitoring and caregiving. These restrictions are illustrated in the following quotation:

"All I had been doing stopped. I am a trained electrician, but I have been compelled to stay at home because my mother can easily escape. I have also feared to get married because I am not sure if my wife will cope with my mother's situation." (35 year-old male providing care to his mother)
Formal caregivers also noted that their roles as professional caregivers sometimes brought them into conflict with families over caregiving roles. Informal caregivers described having to spend time educating informal caregivers about successful aging and the importance of living in older age with dignity. Some formal caregivers even suggested that informal caregivers engaged in behaviour that could be perceived as potentially hastening the death of older-age family members: "I was supposed to pick the patient from his home for medical review and the family members soaked all his clothes in water so that he fails to get what to wear while going to the medical centre. This was done with the intention of denying the patient medical attention so that he dies so fast to save themselves from financial burden. This act was annoying. I had to reschedule the Doctors' appointment and decided to embark on educating family caregivers about the importance of letting their elderly family members age gracefully." (28 year-old formal caregiver with 4 years of experience providing care) In the same way, formal caregivers expressed their disappointment with informal caregivers whose actions led to the death of their patients: "We had a case where a patient was poisoned, and they announced his death. Fortunately, when we arrived at his home, he was still alive. Our intervention made the patient live for an extra four years.

This was very annoying and the family members hurled insult on us. We have resolved to work hard in educating the community about taking care of people with Alzheimer's disease." (37 year-old formal caregiver with 7 years of experience providing care)
On the other hand, both formal and informal caregivers described conflicts over roles and responsibilities of caregiving. For example, in most Ugandan families, the primary responsibility for caregiving is borne by adult children (e.g., son or daughter-in-law) or adult grandchildren, and in some instances a single adult child will bear sole responsibility despite the capacity for other adult children to also share the responsibility: When I ask them to help us sometimes and stay at home with grandma, they refuse and sometimes abuse me. This has more often caused conflicts between those families and mine." (44 year-old female providing care for her mother-in-law) Whereas informal caregivers experienced conflicts among themselves, formal caregivers experienced conflicts with informal caregivers who abandoned family members at the medical facility: "We have had to confront and conflict with family members of our patients over abandoning caregiving roles to us which interferes with our mutual relationships. They refer to their sick relative as 'ours', literally meaning that they belong to us. They assume that once we enrol patients into our program, we are solely responsible for the provision of the entire care. Yet our role is more technical.
We expect them to provide the day-to-day care. However, they don't do it, and this causes conflicts between us all." (37-year-old formal caregiver with 7 years of experience providing care)

Psychological burden
Informal caregivers described numerous experiences of being stigmatised by their communities and being uncomfortable with having friends come over for visitation because of their patients' behaviour.

Discussion
This study explored experiences related to the burden of caregiving for people living with ADRD among informal and formal caregivers in rural southwestern Uganda. Our summative findings indicate that both informal and formal caregivers are highly burdened by patient's cognitive/physical deteriorationincontinences, loss of memory, physical immobility) leading to physical, financial and social burden (back pain, physical exhaustion, purchase of special foods/diapers, social isolation, and conflicts over caregiving roles). Nevertheless, our results indicate that only informal caregivers experienced the burden related to patient's problematic behaviour (confabulation, aggression/destructive behaviour) and psychological aspects such as stigma, anxiety/ hypervigilance and substance misuse.
Even though there were overlapping subthemes between both categories of caregivers, some of the subthemes were more prominent among formal vs. informal caregivers, and vice versa. For example, both formal and informal caregivers reported dealing with family conflicts. However, only formal caregivers reported encountering abandonment of their patients (by family members). In a systematic review that sought to explore how formal and informal caregivers can work together to strengthen the care triad, it was recommended that working with family caregivers required professionals to adapt to a different way of functioning [28].Further research is needed to provide specific recommendations for how formal and informal caregivers can work together to strengthen the care system and reduce family conflicts over caregiving.
Unlike formal caregivers who expressed frustration with patients who did not adhere to medication or otherwise engage in care, informal caregivers explained that problem behaviors led to a form of courtesy stigma [29] and contributed to caregivers not wanting to have friends come over for a visit.
This finding is consistent with one systematic review showing that cognitive decline contributes heavily to caregiving burden and general wellbeing [1]. The psychological burden of this stigma is also consistent with previous studies that have found correlations between caregiving burden, stigma, depression, and anxiety [30][31][32][33]. Moreover, Informal caregivers in our sample explained that they were always overly alert, spent sleepless nights fearing for un expected such as patient disappearing, or even dying without their awareness. This resulted into the caregiver's inability to attend social functions thus leading caregiver's confinement.
Although our finding that informal caregivers used substances as means of coping with caregiving burden are in line with previous studies [34][35][36]. It could also be explained by the fact that social support of informal caregivers in our study was constrained by confinement in one place. Never the less, it's important to note that the concepts of substance misuse, stigma, and anxiety were not discussed in details within our study. Future quantitative studies should closely examine the association between caregiver's burden and mental health concepts such as these within the context of rural communities in Africa.

Limitations
Interpretation of our findings is subject to several limitations. First, the qualitative nature of our study design should be taken as hypothesis-generating rather than as hypothesis-testing. Second, certain biases common to retrospective designs may have affected the study participants, including recall and social desirability bias. Thirdly, our findings may not generalize beyond the specific study setting.
Finally, although the families who receive services from this non-governmental organisation are largely similar to other families in the region, they most likely receive more support for family members with ADRD compared with families in more isolated rural areas. We recommend future comparison studies between caregivers who receive specialised formal/ material support and those who don't.

Conclusion
Caring for patients with Alzheimer's disease and other related dementias is physically demanding, mentally draining, and financially burdensome to both formal and informal caregivers in rural Uganda.
The formal caregivers in our study primarily described financial, inter-conflicts and physical burdens but not psychological burdens, whereas informal caregivers described the entire range of caregiving burden. Professional and informal support services, such as counselling, support groups, and public awareness campaigns may help to alleviate some of these challenges, along with appropriate financial support by all stakeholders. Availability of data and material The data sets used and analysed during the current study are available from the corresponding author on request.

Competing interests
The authors declare that they have no competing interests. Authors' contributions HEA participated in the conception and design of the study, collected the data, performed the data analyses, interpreted the data, and drafted the manuscript. PA participated in the conception and design of the study, supervised data collection, and revision of the manuscript. GZR, SM, EKW, CO, and ACT participated in the conception and design of the study, and revision of the manuscript. All authors read and approved the final manuscript.