Although incurable, Alzheimer’s disease can be managed

Degeneration of one’s brain cells that leads to dementia is common, although many do not want to recognise it, saying it is witchcraft. September 21 was World Alzheimer’s Day and the fight is against stigma, which keeps caretakers in the shadows.

Dr Paul Kiwanuka-Mukiibi, the executive director of Uganda Alzheimer Association , who nursed his mother while she battled Alzheimer’s disease says it was his children, then much younger, who noticed the change in their grandmother’s conversation pattern.

“Jajja mama keeps asking the same question even though I answered it earlier,” they would say.

For two years, he thought nothing of it but by 2007, it was clear to the family that something was wrong. Dr Kiwanuka-Mukiibi took her to Uppsala University Hospital in Sweden for a check-up.

“Convincing her to go with me was not as easy and she later, in a conversation after diagnosis said she was reluctant because she had a clue of what the tests would reveal since she had been a nurse for so many years,” he says.

Early symptoms

The health development specialist shares that one of the most recognisable early symptoms of Alzheimer’s disease is memory loss, more so of recent events and, with time, failure to recognise places, objects and people.

“Alzheimer’s disease comes with brain cell degeneration and later, the death of these cells and neurons. As such, the brain message transmitters cannot function properly anymore,” he explains.

For patients that have had the disease for a long time, he says, a brain scan done will show brain shrinkage because, as brain cells die, they are not replaced, affecting the temporal lobe and hippocampus, which are responsible for storing and retrieving memory.

Sheeba Lukwago’s mother is also ailing with Alzheimer’s disease, which she has had since 2011 when she was 69 years old. Nanyunja says it started with sudden forgetting and repeating herself, which soon became too much and sometimes irritating. The progression was so fast that in less than a year, she could barely remember anything.

“Tests at AgaKhan Hospital in Kenya revealed that she had early onset of dementia and was given medicine to help reduce its advancement,” she shares.

“Unfortunately, when the medicine got done, we did not replinish it since we thought she was better. This was a mistake because she went downhill so fast; neither sleeping nor eating thus losing a lot of weight. Lack of sleep was the worst because when awake, she would bang doors, and talk to herself,” she explains.

The family was later advised to see a brain surgeon at one of the hospitals in Kampala. However, after this hospital visit, the medication given caused worse symptoms.

“Finally, another doctor prescribed medicine similar to what we had been given at first, in addition to others,” Nanyunja says. Today, she is thankful that her mother can sleep and eat well and has gained some weight. However, because she cannot carry on with tasks as well as before, there are fulltime nurses to help.

Looking back, she says, the experience is sad because there are days she simply wants to go home and talk to her mother, but this is impossible.

“It hurts that she cannot remember much. In June, we lost our father, who was such an important person in her life that even when he was in hospital, he would always call to check on her. It is sad that to date, she does not recognise his passing,” she sadly says.

Memory loss

Dr Kiwanuka-Mukiibi emphasises the big gap in memory, saying that while a normal person may forget where they parked their car, Alzheimer’s patients will forget they came with a car. However, he says, while it is frustrating for you as a caretaker, show them empathy because in the initial stages of the disease, their emotional awareness and control is still intact.

He adds that as the situation advances, patients start failing to hold a sensible conversation and become more irritable with lots of mood swings. However, amazingly, they will still recognise and appreciate expressions.

“They also retain the ability to read and seemingly understand, for that moment, what they have read, as well as remember music lyrics. My mother remained an avid reader and sung her favourite songs even as the condition progressed,” he laughs.

Importance of caretakers

Being a part of this patient’s life is so difficult and Dr Kiwanuka-Mukiibi says his father, his mother’s primary caretaker, after more than 50 years of marriage, could not bring himself to make the necessary changes because, for him, that would mean sleeping in different bedrooms.

“He just did not have the strength to do it. I guess, with the strain, some tasks are impossible without help. While I had spoken to him about it, it was only after a call from my sister, a nurse in Sweden, that he did it.”

Dr Kiwanuka-Mukiibi adds that primary caretakers can never be the same because they experience ‘grief of loss’ on a daily basis as they see their loved one deteriorate.

Stigma

He adds that the stigma is so bad because in some cases, people say the patients are bewitched, which makes many caretakers draw away from the public eye, even when they need someone to share their pain with. “Some stay silent because they equate the condition to other forms of mental illness, or simply take the patient to Butabika National Referral Mental Hospital thinking it is a case of psychosis,” Dr Kiwanuka-Mukiibi shares.

That is one of the reasons why UAA was formed and Nanyunja says it has helped her cope.

“I was led to the organisation after searching online for an association that could help people affected by Alzheimer’s disease in Uganda. On seeing Dr Kiwanuka-Mukiibi’s email, I replied and he called back. He usually tells me it is okay to feel sad and cry because the journey is tough,”  she says.

When to talk to your doctor

If you or a loved one are concerned about Alzheimer’s, talk with your doctor. Symptoms of dementia are linked to many other conditions besides Alzheimer’s, including anemia, diabetes, and heart and lung problems.

Sharing key details with your doctor can help him or her determine the cause and best course of treatment.

If the diagnosis is Alzheimer’s, your doctor will do more than offer treatment. They can be a valuable resource for answering questions and finding support services for you.

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