Name/identity of the illness
Participants used two local concepts to describe dementia. The concepts were “Akahugye and kwebwayebwa” which means forgetfulness “ okugwejegyera munonga” which can be translated as excessive sleepiness
More than a half of participants identified the disease as disease of forgetfulness noting that people with the disease easily forget things that were important to them including names of loved ones, important places and directions. Sometimes they do mix up things which may create confusion among the family members especially when it comes to money issues. They think their relatives steal their money when in actual sense these items are normally kept somewhere or a patient can be handling something and laments where she or he could have put it as evidence by quotes from both male and female caregivers
“She certainly started forgetting because when you give her maybe like money, she forgets where she keeps it and we start searching the whole house until we find it. At times she complains that we steal her money which is not true”. Caregiver Female 7
“Of recent her grandson called us on phone when I handed the phone to her she asked me what to say” Caregiver male 14
…….“You find her carrying rags thinking that it is a baby” Caregiver Female 23
Some called it the disease of excessive sleepiness noting that the patients with symptoms normally dozed off all the time
“In fact I always worry when I leave her alone at home because she may doze while cooking and fall in the burning stove” Caregiver Female 1
Perceived causes of illness
Respondents identified a range of physical, psychological and spiritual explanations to account for causes of dementia
Physical
Identified physical causes included age, excessive alcohol consumption, loss of sight, other physical illnesses like high blood pressure, malaria, extreme sleepiness, and other frequent illnesses, medication side effects of medication and poor feeding.
Most Patients and caregivers acknowledges that as you grow old the brain also grows old and in turn you start forgetting while others think it comes secondary to others illnesses and then poor feeding.
I think it is age and sickness…. even community people tell me that am old that is why am experiencing all this. Patient Female 25
… taking different medications……. I eat poorly I do not eat the food I like. Patient Female 17
Psychological
Identified psychological causes included stress, staying alone, poor health, frequent loss of loved ones like husbands, children, siblings which also contribute to loss of memory. It is believed that having so many thoughts and being alone puts you at a risk of developing dementia and these were pointed out by both patients and caregivers.
“She lost 6 of her children who were already grown up. Since then, she started forgetting” Caregiver Female 23
“Losing my children, you see losing your closest people affects you so much; I lost all my relatives and this has affected my wellbeing” Patient Female 4
Witchcraft
A few respondents, both patients and care givers associated dementia/loss of memory with witchcraft. . They noted that jealousy neighbors and relatives had decided to bewitch the patients and as result the patient had lost memory
“Am thinking that someone bewitched me and that’s specifically the root cause of the problem” Patient Female 16
Perceived appropriate treatment
Participants identified five sources of care that were perceived to be appropriate for patients with memory loss. These included modern medicines, proper feeding and spiritual. However, a substantial proportion of respondents believed that loss of memory was part of normal aging process and therefore required no medical attention.
No need for treatment
Respondents who believed that forgetting was part of normal aging process noted that seeking treatment was a waste of time and resources. They believed that aged people who were losing their memory could benefit more from care and support from home than making them go around hospital since this was a disease of old age.
“Forgetting, I never took her to the hospital. Is there any hospital that cures memory loss? I do not think doctors cure that” Caregiver male 14
“I never got medicine for memory loss there is no medicine for memory loss” Patient Female 17
Medical
A good range of participants believed that this could be treated using modern medicine and indicated to have sought medical treatment.. However most of them indicated that they went to health facilities primarily for physical illnesses that needed urgent attention and forgetting was a secondary reason for the visit. During these visits some of the patients were able to get investigation and diagnosis of dementia.
“The doctor diagnosed her carefully; she was put in scan and even her blood was also tested for malaria but all results came out negative. However the doctor told me she has ulcers and age is disturbing her the most”. Caregiver Female 28
“I went to the hospital for treatment and I am still on treatment otherwise I would be dead by now”. Patient Female 1
Proper feeding
A few respondents believed that forgetting was a result of poor feeding and therefore what people with memory loss needed was proper feeding. Some noted that information about role of diet on memory regeneration was received from both the formal sources such as health workers, and informal sources such as friends, and other community members
“I have majorly ensured proper feeding on her. This is both via eating in time and feeding on the recommended foods”
Spiritual
In addition to other form of care most participants believed that spiritual counseling and prayer was a good for patients with memory loss. It was noted that when patients received prayers from religious leaders made them feel better spiritually
Some responses include
“…….I only prayed to God for his mercies; and slowly I started to gain my memory.” Patient Female 10
Perceived effect of Memory loss
Participants identified several effects that resulted from having a disease of memory loss or being a person caring for a family member with memory loss. The effects included loss of productivity, failed social responsibilities, Financial constraints for both patients and caregivers, Health of the caregiver and too much burden, Financial loss due to forgetting, Psychological and lack of secrecy.
Productivity
Loss of productivity was identified by most respondents as the most negative effect of dementia. Care givers in particular care had to force themselves and put other activities on hold. Most of caregivers expressed stress related to care giving as these patients were not able to perform any of the activities of daily living such as using the toilet, bathing, washing, cooking.
“She doesn’t do anything; … needs extensive care. This has prompted me to drop much of my day today schedules”. Caregiver Female 12
“I do not do anything; …… In the morning before she goes away, she takes me out side and leave food with me and that is where I remain until she comes back”. Patient female 14
Failed Social Responsibilities
Other identified effect of dementia included failing social roles on the part of the patients. Respondents noted that because patients forget things they are were unable to perform the expected roles in their families or community. Some of these roles included failure to care for their loved ones for example taking care of spouses, unable to attend community meetings and functions unable to play their role of transmitting local knowledge such as advising and counseling the younger generation. These failures lead the people with dementia into isolation and finally they are now socially isolated.
“….I cannot execute my obligations as a woman and mother like before. “Patient Female 4
“I used to walk slowly and go to the trading center but now I cannot. I keep here all day long alone”. Patient Female 25
Financial constraints for both patients and caregivers
Financial constraint was an effect of dementia that was mentioned by almost all the care givers. Respondents noted that they faced financial problems because they were spending money to care for patients but they were too busy providing care and lacked to make additional money. Some indicated having spent all their saving and had remained empty handed.
….she goes to the trading center alone and gets things from the shop on credit and forgets to tell me. You find people complaining that I do not clear my mother’s debts. So her condition has really destroyed my status and has affected my income somehow because I spend where not necessary. Caregiver Male 10
Poor health
Some respondents noted that care givers were burnt out and experienced poor physical health due to burden of caring for patients with dementia as reported by a patient below
“Both my husband and daughter I disturb them so much. They carry my bucket. They employ house maids but because of my condition, they cannot stay home for long. At times I pray to God to make me rest in peace but it seems my time is not yet”. Patient Female 4
“Cleaning her is very challenging, the smell that comes out of her while preparing her is awful and it’s making me sick in fact I developed strange cough because of that”. Caregiver Female 28
Financial loss due to forgetting
Patients attributed the sickness to have made them loose their money. They said due to memory loss whenever they place their money somewhere it gets lost either it is not found.
If someone comes across it cannot reveal it and then they also have no choice some declare their money to their caregivers when they have wished not because they know that they will forget it where they placed it. Some patients still had a feeling of helping financially to other people and they do not want their caregivers to know because it will create a conflict and others feel that every person should have a secret but since they forget it becomes very difficult hide anything.
“I have lost a lot of money; you know money is very important it even killed Jesus”. Patient Female 4
“I cannot keep my money secret. I try to do so I forget where I kept it so am forced to give it to my daughter to keep it for me” Patient Female 17
Psychological
Most patients felt they are not loved; they have lost peace and feel isolated all the time they cannot associate with the rest as they used to do before the sickness set in.
“It has honestly affected my health; I have no peace at all and since there is no treatment for it, I have nothing to do”. Patient Female 4