Alzheimer’s disease: The long, gradual goodbye

Njeri Maina @njerimainar What part does memory play in love? Would you love someone unconditionally even when they did not know who you are? Would you still love someone even when they could not reciprocate because they have completely forgotten who you are? While you may never have to grapple with these questions, this is the reality of so many people whose loved ones suffer from Alzheimer’s disease. Alzheimer’s disease is the most common form of dementia, a term describing a group of symptoms associated with a loss of memory or other thinking skills. Dr Juzar Hooker, a consulting neurologist at Aga Khan University Hospital in Nairobi, says Alzheimer’s disease accounts for 60-70 per cent of all dementia cases worldwide. Dr Hooker further explains that Alzheimer’s is a disease that affects the neural functions of the brain, thereby interfering with memory and other mental functions. Its symptoms include forgetfulness, getting lost even in familiar surroundings, financial and judgement errors, behavioural and personality change, difficulties looking for words and with language, and challenges with navigating visual information and space. “In Alzheimer’s disease, for reasons that are not entirely clear, affects certain proteins in the brain cells. These cells then slowly die off and their connections disappear, resulting in brain dysfunction and dementia. Chemicals that help brain cells talk to each other are thereby reduced in the brain,” Dr Hooker explains. John Oluoch (not his real name) says he noticed most of these symptoms in his mother a few years ago. It started off with general forgetfulness, and the family decided to take her to hospital for a few tests. They conducted the first test as a baseline, then followed up with another exactly six months later to gauge how well she was faring. Her neurological functions had deteriorated and she was diagnosed with dementia. That was in 2018. “By then she had started forgetting where she had placed her things. She would at times cook the same meal several times because she forgot she had cooked the exact thing earlier. She would also go for shopping for things already in the house since she could not find them or she had forgotten where she had placed them. A lot had to change,” John shares. John and his siblings decided to start shopping for her and placing items in clear sight so that she could see exactly what was there. He would also change the design of the house he was then building to include a carefully designed living space that is calm, easily navigable and safe for his mother. As much as he has accepted things as they are, he says the role of care-taking is not easy because it is unpredictable and the relational bond further complicates things. “Each day is different. We have learnt in our dual roles as caretakers and her loved ones that we need to stay calm. Even if she gets agitated, or asks us who we are every time she sees us, we need to stay calm to avoid agitating her. If she does not remember something, we calmly explain it to her without showing sadness or overt emotion as that would upset her,” he explains. The great thing is that John’s mother is pretty open and is herself when she is with her grandchildren and other children in general. Ongoing journey “The grandchildren are older and understand that granny has a condition, and they visit and just have conversations with her and go with the flow. I think it is easier for them as they are not like grownups who love saying, remember that, remember when. Older adults tend to be firmly mired in the past while children tend to actively live in the present day,” he says. John describes caregiving as an ongoing journey with numerous lessons in love and life. He insists on the importance of getting an early diagnosis and going for regular checkups to monitor the disease. It is also important to be very observant as most dementia patients may forget when they are in pain or when they feel cold, hence it is up to the caretaker to pick up on the cues and act accordingly. Over time, language disappears, and that coupled with forgetfulness means patients may not be able to explain their symptoms, pain or vocalise what they might be going through. John represents male caregivers to people ailing from dementia, a demographic often overlooked when talking about dementia and caregivers. Elizabeth Mutunga, founder of Alzheimer’s and Dementia Organisation, agrees that caregiving is an emotionally and physically tasking endeavor. Back in 1992, Elizabeth and her siblings took care of their ailing dad who was in the last stages of Alzheimer’s disease. She remembers how her dad suddenly changed from an amiable man to a more aggressive person in 1992. He would wander away and get lost. He would do out of character things like hide himself, repeat himself or even sell his car part by part rather than the whole. “Back then, there was little information about Alzheimer’s. We thought he was acting out. It took 15 years for us to get the right diagnosis. He would pass on exactly two years later. Our battle to get the correct diagnosis showed me that there was an information gap in regards to dementia,” she says of the reason she founded the organisation in 2007. Dr Hooker clarifies that genetic risk factors play a role while science cannot determine to what degree. He adds that age is the biggest risk factor, although there are some types of dementia common among younger people. Vascular risk factors such as high blood pressure, diabetes, obesity, high cholesterol, smoking, and strokes are very important potentially modifiable risk factors, as are physical inactivity and brain injury or trauma from a hard hit on the brain. It is, therefore, true that one can delay the onset of Alzheimer’s by having a healthy lifestyle as prevention of vascular diseases is also good for the brain. Exercise, a healthy diet, and prevention and optimal treatment of high blood pressure, diabetes and high cholesterol would be great at preventing or delaying the onset of Alzheimer’s disease. Diagnosis, management and care “A clinical assessment by a competent doctor with a good history and examination including cognitive assessment is the most important step in the diagnosis. Tests such as a neuropsychological assessment, MRI or CT brain scanning, an EEG (a recording of the electrical activity of the brain), PET functional brain imaging including that of amyloid deposition in the brain, blood tests, sometimes a spinal tap, and in selected cases also genetic tests are all useful to support the clinical diagnosis,” Dr Hooker explains. After diagnosis, management and care are very important as they can stave off the need for institutionalisation in the latter stages if done properly. He says there are some drugs that can help slow down the neuro-regression such as administering cholinesterase inhibitors to help boost the amount of the chemical messenger the brain cells use to talk to each other. Other medications are used for specific symptoms such as behavioural challenges and hallucinations or delusions, especially in advanced disease, as well as for sleep problems. Research into more treatment drugs is still ongoing with Aducanumab, a drug that clears out clumps of a protein in the brain called amyloid-β, approved earlier in June. Dr Hooker emphasises the importance of routine and physical exercise as well as a social and mental activity regime as they are very useful adjuncts in the day to day management of persons living with Alzheimer’s disease. There is no specific diet that is scientifically evidence based apart from a healthy Mediterranean type diet in terms of disease prevention. John explains that coming up with a routine that incorporates regular walks with his mother has helped in her day to day care. He shares how routine can help keep order even when memory fails. He says it is invaluable to have a support system from his family and friends. Elizabeth reiterates the same and emphasises on the need to ask for help when one feels overwhelmed as a caregiver. After caregiving without taking breaks because of guilt and feeling as if she was abandoning her dad, Elizabeth advises caregivers to take care of themselves too. Plug into a support group. Remember to take a day at a time, she advises. “The most important message I would like people to get from this is that Alzheimer’s is not a disease caused by a curse. It is a disease like any other. I hope that sharing our stories as caregivers one story at a time is a small part of breaking the ‘hush hush’ and stigma associated with the condition. We hope to empower people through the provision of knowledge and information that can help with early diagnosis as well as help caregivers and Alzheimer’s patients,” Elizabeth says in conclusion.

Alzheimer’s disease: The long, gradual goodbye

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Alzheimer’s disease: The long, gradual goodbye

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