Fourthemesemerged from our data: (1) Inadequate awareness about ADRD, (2) Limited ability of PHC providers to Identify and diagnoseADRD in the elderly, (3) Lack of Training (continuous medical education) in Alzheimer’s and related dementias, and (4) Poor attitudes of PHC providers towards people with ADRD.
A total of 51 in-depth interviews were conducted which was sufficient to achieve thematic saturation. We had more females (n=30) than males (n=21). We observed understaffing at HC IIIs and as such more participants were interviewed from HC IVs (34/51) than from HC IIIs (17/51). The age ranged from 20 and 55 years (Table 1). Of the participantsinterviewedthere were 30nurses, eight midwives, three psychiatric nurses, 11clinical officers, and two medical officers in the health facilities. Views of all the participants were included in the analysis and contribute to the conclusions in our study.
Awareness about Alzheimer’s disease and related dementias
When asked about awareness of ADRD, participants generally described ADRD as a degenerative condition of the elderly associated with forgetfulness.
“…is a degenerative disorder that occurs in mostly the elderly with features of dementia they have what we call tremors, most of them tend to forget the near things than the far; they usually tend to have a crystal idea of the past but the near they usually forget” (Medical Officer, Isingiro district).
Theparticipantsreported that they were aware of other forms of dementia, such as that induced by HIV, alcoholism, drug and substance abuse, nutrition, as well as the environment induced dementia that results from stress.
Uhhhmmmm… it can be trauma, it can also be usual conditions like meningitis, HIV, some people can get that syndrome and also maybe age (Clinical Officer, Kabale district)
In cases of head injuries, dementia can result, in cases of a person with epilepsy and it is poorly treated can also develop dementia and also cases of infections, meningitis and deficiencies in Vitamin – VitB1, VitB12 can also lead to dementia. It can also be genetic in other instances (Psychiatric Nursing Officer, Isingiro District).
When probed for the symptoms of ADRD, PHC providers reported looking fortremors, memory loss, complete lack of self-care, and hallucinations.
You find those people presenting with tremors; they forget quickly, they hallucinate, and that is why they are sometimes referred to the psychiatric department because they have psychiatric symptoms (Nursing Officer, Isingiro District)
There is loss of memory, they are disoriented, the concentration is poor, you find the sleep is also very poor (Principle Nursing Officer, Kabale district)
Identifyingand diagnosing dementia in the elderly
Participants indicated that the earliest opportunity for the PHC providers to identify elderly people with dementia is when the mental functions start to fail –that the elderly person starts to forgetand there is disorientation.
Definitely when they come and you try to ask them about their ages and they cannot remember when they were born and some events that could have happened when we are taking history, then you realize that this person could be having a problem (Clinical Officer, Mbarara district)
When you communicating to that client and you want them maybe to paraphrase what you have said that person forgets the story you have been talking about and…even when you put something some where they can look around the whole house looking for where they have placed their items and they fail to remember where they put them. So, you know that they have such a problem. (Nursing Officer, Mbarara district)
Participants also indicated that they used the physical hygiene of the person to determine that they had ADRD. They noted that if the elderly patients’ ways of dress and conduct had drastically changed and they looked like they were not aware about what was going on, they would asses for ADRD. One participant said,
The cognitive aspect of it - if they are not taking care of themselves - their personal hygiene declines, where they are unkempt, they cannot look afterthemselves. That is when we can assess. (Clinical Officer, Rukungiri district)
Our study also found that somepatients who had a long-standing relationship with PHC providers often disclosed difficulty to recall recent things as expressed by a nursing officer in one of the districts:
“Musaawo[Nurse],...the other day I forgot to wear clothes, and it is my kids who alerted me and said, Mummy, please!! Put on clothes…..so they tell us” (Nursing Officer, Mbarara district)
When asked how they concluded that someone has ADRD, most of the participants indicated that they had not been equipped with the necessary skills to recognize and diagnose Alzheimer’s disease and related dementias. Therefore, they were not diagnosing it for fear of misdiagnosing.
I have not made a diagnosis of Alzheimer’s. What I can only do is treat symptoms or signs or making other diagnosis, sometimes calling them dementia or psychosis. And most of the patients we treat here, we treat for psychosis. So, I do not know whether sometimes we make the wrong diagnosis, but most possibly it is oftentimes the wrong diagnosis. (Clinical Officer, Rukungiri district)
During the study, we found that there were no guidelines at the health facilities to support the PHC providers when screening for ADRD. Most of the participants expressed the need for some form of criteria to guide them when attending to the elderly patients as expressed by a clinical officer in Mbarara district.
We do not have criteria of scoring people to know those signs of forgetfulness and those other related signs (Clinical Officer, Mbarara district)
Trainingin Alzheimer’s and related dementias
When we asked the participants if they thought they needed training in ADRD, most answered to the affirmative. They indicated that PHC providers needed to know more about the condition and how to manage it, including where to refer patients for specialized care.
Generally, people take dementia to be a simple disease. They don’t take it as a serious problem. But if we could get to know more about it, perhaps we can take it seriously. And if we can get to know where to refer, it would help, because for us we think that a psychiatric disease is referred when someone is boxing people or when they have to be tied with ropes [restrained]. But for someone who is just forgetting things and you refer them [says this laughing], they do not take you seriously when they see such a referral. (Clinical Officer, Isingiro district)
The participants reported not receiving any in-service training related to ADRD. They suggested that to improve management of many diseases, the PCH providers should be provided with continuous medical education.
I have not had training in dementia management, butI met them in the normal training…for us to improve in management of many diseases, we should be provided with CMEs (Nursing Officer, Isingiro district)
PHC provider’s attitudes
When asked what they would do when they got a patient with signs ADRD, most of the participants did not have an obvious response because they believed that some of the signs like forgetfulness were part of the normal aging process. They indicated that they would instead concentrate on more obvious symptoms as illustrated below:
Do I even know? When they come, we treat those other problems— neuropathy, high blood pressure—so we have not been concentrating on dementia. Maybe if the person is admitted and you see that this person is old, and the treatment schedule you emphasize it, maybe to the daughter or son who is taking care of the patient, because you think that this person is old and everything I tell him he may not be able to remember but having a mind that let me look out for dementia, ….(laughs)…. I have not been doing that. (Clinical Officer, Isingiro district)
Concerning referring and receiving patients with ADRD, participants acknowledged the presence of community linkage facilitators, but decried their limited capacity. They added that although they received referrals through the community linkages, they hardly received those related to dementia.
…we also have an issue of lack of community linkage – we have community linkage facilitators but they basically major in a few things – …HIV, PMTCT. Those referrals we get but it is difficult to get a psychiatric related referral (dementia), because people take it normal that anyone old should forget. So, they tend to look at it as something normal (Nursing Officer, Mbarara district).