Participant characteristics
A total of thirty-four interviews were conducted across the three hospitals in southwestern Uganda. Of the caregivers, daughters comprised about one-third (32.4%); most were married (64.7%), and slightly over one-third were aged between 44-53 years (35.3%). Only 5 caregivers (14.7%) had no formal education, while the majority was of Anglican religious faith (61.8%). Most of caregivers had been caring for the person with dementia for 5 years or more (70.6%) (see Table 1).
Table 1 Characteristics of study participants
Participant characteristics
|
|
Freq.
|
%
|
Age
|
24-33
|
6
|
17.6
|
34-43
|
6
|
17.6
|
44-53
|
12
|
35.3
|
54-63
|
6
|
17.6
|
64 and above
|
4
|
11.8
|
Relationship to the patient
|
Daughter
|
11
|
32.4
|
Daughter in law
|
7
|
20.6
|
Son
|
7
|
20.6
|
Wife
|
5
|
14.7
|
Grandson
|
1
|
2.9
|
Niece
|
2
|
5.9
|
Friend
|
1
|
2.9
|
Marital Status
|
Widowed
|
2
|
5.9
|
Married
|
22
|
64.7
|
Single
|
7
|
20.6
|
Divorced/separated
|
3
|
8.8
|
Education Level
|
None
|
5
|
14.7
|
Primary
|
9
|
26.5
|
Secondary
|
10
|
29.4
|
Tertiary
|
10
|
29.4
|
Religion
|
Anglican
|
21
|
61.8
|
Catholic
|
8
|
23.5
|
Islam
|
3
|
8.8
|
Pentecostal
|
2
|
5.9
|
Duration of the patient with dementia symptoms (years)
|
Less than 5
|
10
|
29.4
|
5-10
|
13
|
38.2
|
Above 10
|
11
|
32.4
|
Caregiver support services
Dementia caregiver support services in southwestern Uganda were structured into two major themes 1) medical supports utilized, and 2) supports beyond the medical care system. Discussion of medical supports highlighted information support provided by medical providers, as well as the limits of these support services. Discussion of supports beyond the medical care system included themes of emotional and instrumental support provided by religious leaders, the local community, and family members.
Educational support Participants reported receiving guidance from health professionals, who were typically the nurses and physicians from the patient’s care. Guidance was often focused on symptoms of the disease and prognosis. Participants were told the importance of treating comorbid conditions, several management modalities and referral for specialized management of dementia. However, when discussing support services provided within the medical care system, the information given did not include reference to emotional support experienced as they care for their family member with dementia.
“The only counseling, I have received, is from the doctors in-charge of psychiatry about the prognosis of the disease” 49 year old female Caregiver.
“It’s basically concerning my patient, annoyed, over reactionary, paranoid i.e. how to be patient with her and not being rude. And telling me how patients with dementia behave such as beating people and over reacting. So knowing all that helped me to take good care of her.” 47 year old male Caregiver
Limits of medical support Most of the participants reported not receiving emotional guidance on how to manage patients with dementia. They either reported that they did not know where to get counseling from or that such service is nonexistent.
“I don’t get any counseling. I don’t even know where they are, because there are no established institutions for me to go for counseling. I am lucky that my wife is a counselor. She worked with AIDS information center so when we get time we sit together and talk and we counsel each other… besides that, I am also a trained counselor in my course. I did adult and community education because when we were dealing with old people, we would counsel them so I would counsel them” 65 year old male Caregiver.
The participants highlighted the need for formal counseling services within the health system to better prepare caregivers on how to manage people with dementia.
Participants often noted that they did not know about the disease and in the absence of professional guidance turned to non-professional sources such as guidance from community members, family, and the internet.
“Well it would be good if there were systems and counseling services that could prepare caretakers psychologically probably, we don’t know much about the disease itself.” 47 year old male Caregiver
“Maybe when the doctor told me about the problem, I went to internet and googled. So there is that part concerning how the people of Alzheimer’s diseases are nursed. So I got it from the internet through googling because the doctors had told me that there is no treatment. And on internet I found out that when a patient feeds on coconut oil or put it on bread or food it helps. And I tried it and I got it from internet, so that it could help her” 49 year old female Caregiver
Support utilized beyond the medical care system
Participants reported receiving “emotional support”, as well as “instrumental support” to care for their loved one from sources outside of the medical system, including their religious communities, family and other community members.
Emotional support
Participants described receiving support from religious leaders including pastors, sheikhs, and priests, and members of their religious community. This support typically took the form of emotional support provided through discussions about personal experiences, prayer, songs, and Holy Communion that was noted to improve the subjective mood and well-being of patients and caregivers. The emotional support was in the form of encouragement and advice on how to accept living with people with dementia. This support primarily occur during social encounters and religious services as evidenced by the quotes below
“Some people come from church and visit us and we become happy for the whole day, praying and singing and he feels good. And others come to check on [him] and they talk to him… even community members, family members, and other relatives check on us and when he looks at them, he stops thinking a lot” 56 year old female Caregiver.
“Service!!! Taking my patient to church to socialize with the rest, and sharing with others helps us to remain active other than being lonely back home”39 year old female Caregiver
Instrumental support
The guidance from community members also included instrumental support, such as informational guidance on how to care as well as physical care for a loved one with dementia. However, this support at times contained conflicting advice which was confusing.
“You as a person you can look at things where by one person tells you to go for prayers and another one tells you to see a doctor, then herbalists when you consider what your doctor tells you, you decide on your own which route to follow and sometimes do not know the right or the wrong side to take your patient” 39 year old female caregiver.
Participants also reported receiving instrumental support in the form of food and money from community members and family. They described that they highly valued this support as they were unable to grow their own crops due to time spent caring for their loved one with dementia.
“May be when it’s a harvesting season, when a person is coming to check on you, she may bring for you a cup of porridge, beans because sometimes, I can fail to plant anything because of my patient. And I can’t even plant a cup of beans or millet. So whoever comes to check on you, she comes with a cup of flour or beans. That’s the only help we get from the community”39 year old female Caregiver
“We call family members and we sit and talk about where to get medicine like selling her piece of land because medicine is expensive, so we talk about the way forward. She has other children but they are in their homes so when we don’t have medicines, they try to get it for her.” 33 year old female Caregiver