By Sharon Atieno
Dementia- a disease that affects memory and other cognitive functions as well as the ability to perform everyday tasks- is the seventh leading cause of death (1.6 million mortalities).
The disease accounts for more than 55 million cases globally. Two out of five people suffering from dementia live in low-and middle-income countries including Africa. The number is expected to rise to 78 million by 2030 and 139 million by 2050.
This is according to a World Health Organization (WHO) report on the Global public health response to dementia.
Here is an excerpt from an interview with Dr. Mary Amoakoh-Colemen, a public health physician and senior research fellow at the University of Ghana about the disease during the Future of Dementia in Africa: Advancing Global Partnerships Conference in Nairobi, Kenya.
Q: What causes dementia?
Dementia manifests in three ways, we say the ABC of dementia. Due to brain damage, some neurotoxins are deposited in different parts of the brain and depending on which part of the brain is affected, then people may exhibit the symptoms. But the first thing is that especially when people begin to grow old they lose their ability to function like they used to. Okay, not totally, it declines over time. They undergo changes. They become forgetful. They lose their ability to function normally. Some of them become easily agitated, they want to keep to themselves, depending on the mood presentation and then there is what we call the C – communication. The ability to communicate is also impaired. Some of it is linked to hearing loss. As they grow old, the body ages, and the hearing is impaired and so it affects their communication. Because of this manifestation, people tend to think that it is normal. When you are growing old, you’ll be forgetful. When you’re growing old, you become troublesome, you talk too much or you lose things easily. You’re not able to perform well.
Because we think it is normal, we don’t take the necessary action -which is letting these people go to the health facility to be properly diagnosed and managed. Dementia is a progressive disease, it gets worse over time, but with the proper management, it can be controlled so that the progression is slowed and they can live meaningful lives even with whatever challenges or symptoms they may have.
That’s one side of it, the other side is that because we think that they are a burden because of their behavior and the loss of function, we tend to neglect them and not give them the right care. There is stigmatization, sometimes they are thought to be witches or trouble causers. So when the family is meeting, for example, we don’t want them there, and that social delineation worsens their symptoms as well.
So, a lot of it is about us understanding what the condition is and the sort of support that is needed for these people so that they can live meaningful lives because they’re still human beings who need to be allowed to live life in all its fullness.
Q: Age is one of the factors that leads to dementia, are there others?
Age is one factor as people grow old but there are also triggers such as a traumatic experience. Somebody who experiences a significant loss- loss of a loved one, a child, or a spouse or job. The fact that they have stopped working and earning an income they used to earn and now they don’t have access to that can be so traumatic to some people that it precipitates the process.
But we also know that females tend to be more affected than males.
Conditions like hypertension and associated complications. So if you have a stroke, your cognitive impairment can occur as a complication of that and that can also trigger the condition. Some of them are left with what we call vascular dementia because of the processes that come with the stroke, they begin to get cognitive impairments which affect them progressively. Other conditions like diabetes, and smoking are all part of it. But these are modifiable factors, things that you can manage. Again remember that this is a condition that is happening later on in life. It starts with a slow decline and by the time you are making that diagnosis, it is a retrogressive diagnosis. You need to take the history from way back and then make your diagnosis.
In the same way, if we modify our behavior and live right avoiding smoking, and alcohol, diagnosing and controlling hypertension so that we don’t get complications. We reduce the risk of getting this or we slow it down.
But there are also what we call the non-modifiable factors and that’s just the family connections like genetics. It doesn’t mean that by all means if your parents have it, you have it, but it’s been found that for some people it’s genetically linked as well.
Q: How big is the challenge of diagnosis in the continent?
Because a lot of the symptoms have to do with behaviour, being aware that these conditions- the beginning of this behavior or loss of cognitive ability is a problem is important.
But as I said when it starts, we ignore it. We wish it away. We say it is old age or something else. The patients themselves will not present to be properly diagnosed. But for those who see it as a problem will come but sometimes health workers are also challenged with diagnosing it because they do not have the right sense of argument to know that this is a problem. They also live in the culture. So most of them tend to think like the people that this woman or man is old.
The health workers need to be educated that when patients come with these symptoms no matter their age or whatever else. Don’t downplay it, apply the necessary screening or diagnostic tools to find out if it is dementia or something else.
I think that’s important and for a lot of us especially in Ghana, a lot of clinicians don’t know these diagnostic tools. The tools are just the cognitive screening tools but going forward, you may need to do MRI and all that. Sometimes the cost and the access can also be a limitation. I believe that even if we can do good history taking, in terms of the symptoms they present with, and examine them by doing the cognitive screening, we should be able to get a good idea of who is likely to have the condition.
Q: You mentioned earlier that caregivers of people with dementia face a lot of challenges, how so? What can be done to alleviate the challenges?
A lot of the care that people with dementia need is provided outside the hospital. Somebody must be responsible for taking care of this person because they have cognitive impairment, they are not able to function as usual. Because of the loss of memory, there needs to be somebody who is paying attention to this person. The burden falls on the family to a larger extent in Ghana and Africa. The health insurance can take care of only so much. A lot of the cost as well as the daily care given is on the family and yet the same people need to go and work and make money. It becomes a burden in many ways and then they don’t understand what the person is going through. They find it stressful.
Because of the time they need to spend with these people, sometimes they isolate themselves from things they are interested in. This might become a psychological burden leading to stress or depression and that can affect their health as well. Sometimes they don’t take care of themselves. If something is wrong with them and they need to take time to go to the hospital to be diagnosed and treated, because they are with this person who cannot be left alone because they may leave, it limits their access to care.
They [ caregivers] need support to be able to manage this as much as possible and it’s only in a robust healthcare system, that they can get this. Even if you have to pay for the service it is manageable, so there can be periods where they [caregivers]can bring somebody to take care of the patient or they can take them somewhere else. So that they can live their lives as well.
Q: What is your call for action to African governments in regards to Dementia?
Dementia is as important as malaria, cholera and hypertension and unless we tune our minds to that, we will be depriving a key aspect of our population of the care that they deserve. This will be a real injustice.
We know that the African population is growing older. In the past, the life expectancy was young, but now people are growing older and if the government is aware of this in their planning, they should know that we need to plan for the health of the ageing as well. It’s only when we adopt that in our ageing policies and strategies, that we will be mindful of the resources that are needed to create awareness of the conditions that the ageing have including dementia and how to support families and the health system, in general, to be able to take care of them.
We really need to be mindful and put in the resources for education, diagnosis, and management. Sometimes the drugs they need are very expensive. We need a health system that can support these people to be able to live with their conditions just as we are putting a lot of effort into dealing with HIV or malaria.
