Dealing with Alzheimer’s as a caregiver

Esther Mukasa, who took care of her Alzheimer-ridden father before he succumbed to the disease in 2015, says frequent memory lapses was the first thing her family noticed about him in 2009.
“We brushed this off as a trait synonymous with age but oddities such as unintelligible statements also came about. The eccentricity about him had also become apparent to other people,” she says.

Diagnosis
In 2012, a medical diagnosis was carried out at Case Hospital in Kampala where it was confirmed that her father had Alzheimer related dementia. At that time of diagnosis, he was still able to perform minor tasks such as feed, dress, and bathe himself as well as recognise some of his family members. But with time, the disease worsened.
He forgot his children’s names and surroundings. Interestingly, he never forgot the Masaza of Buganda.
“His face would always light up whenever we asked him to recite them,” Mukasa recounts with a nostalgic smile. Mukasa talks of their fight to slow down the progression of the ailment.
“Getting him to swallow medicine was an uphill task. We had to think of creative ways to get him to take it.
There were sprouts of physical violence and frequent questioning of where he was.
The day Mukasa graduated with a Master’s degree and her younger sister with a Bachelor’s degree brings back sad memories for her.

Our father, though not highly educated valued education. He was always thrilled when we hit milestones. However, when we told him about the upcoming graduations in January 2014, he only smiled with no idea of what we were saying.”says Mukasa.
Thereafter, to the day he died, were a couple of nerve racking, heartbreaking incidents, Mukasa says.
Dr Paul Kiwanuka-Mukiibi, the general secretary of Uganda Alzheimer’s Association (UAA), explains that one of the most recognisable early symptoms of the ailment is memory loss, especially of recent events and, later on, failure to recognise places, objects and people.
“Alzheimer’s comes with degeneration of the brain cells and later the death of these cells and neurons. The message transmitters in the brain cannot function properly anymore,” he explains. For patients who have had the disease for long, the doctor says a scan done on the brain will show shrinkage because as brain cells die, they are not replaced.
“This cell degeneration particularly affects the temporal lobe and hippocampus, the parts that are responsible for storing and retrieving memory,” he says. He adds that in the initial stages, the patients also have difficulty finding the right words during conversation, but may recall later what it was they wanted to say. They also find it increasingly difficult performing and completing familiar tasks.
“While you and I may ask ourselves where we parked a vehicle in a huge parking yard, these patients will actually forget they came with a car and so may decide to walk to their next destination. They can also get irritable because of the frustration of knowing they are forgetting things but it is subtle in early stages because their emotional awareness and control is still intact,” Dr Kiwanuka-Mukiibi, adds. He notes that with progression and the death of the brain cells comes loss of weight in later stages.
“While loss of appetite is experienced, the patients also later suffer marked reduction in movement and muscle leading to muscle shrinkage, and the body no longer makes use of food as efficiently as before. Most of them actually become bedridden.”
Caretaker fatigue
Dr Kiwanuka-Mukiibi whose mother also suffered from the disease says being in direct contact with an Alzheimer’s patient can be dangerous in its own way, with the manifestation of symptoms that come with personality and mood changes later on.
“Primary caretakers can never be the same because they effectively experience the ‘grief of loss’ each and every day they see their loved one,” he says.

Change perception
The doctor says that while there is not much that can be done for a patient, there is need for change of perception.
“Even with their disconnected speech or rather fictional conversation, caretakers should just follow along without reprimanding the patients. It makes a difference in the way they end up enjoying their meal, for example, and they sleep better because they feel loved.” Kiwanuka-Mukiibi, stresses.
Mukasa and Dr Kiwanuka-Mukiibi,agree that making great moments and memories with patients helps to ease the pain.
“In so doing, you create beautiful moments amidst all the gloom and that makes nursing easier,” Dr Kiwanuka-Mukiibi advises. Mukasa urges caretakers to consistently talk to other people to reduce the pressure.
“It helps to know that you are not alone because chances of dying before your patient are high, owing to depression, hypertension and the like,” she says.

Dietary care
According to www.alzheimers.org.uk, the Alzheimer’s Society of the UK notes in the later stages, as a patient’s muscles and reflexes no longer work properly, there is difficulty in swallowing (dysphagia) and chewing manifests, with increased risk of choking, and of food or saliva going down the windpipe causing an infection.

Some of the tips they give to make it easier for both the person and caretaker include changing the consistency of the food, for example, serving it in liquid or puree form; using a plate that is a different colour to the food, so it is easily identifiable; not rushing the person, allowing them enough time to eat; and adjusting to taste changes and allowing them to eat what they enjoy.

Another key issue is oral health which can impact ability to eat.
In cases of poor oral health, there may be pain resulting in the person not wanting to eat, or even changes in the way they behave.