Families bear heavy burden of dementia

 

Caring for family members with dementia can lead to exhaustion, fear, and burnout, yet not much has been done to improve the welfare of both caregivers and patients.

Before 79-year-old Angela Wanjiru’s family picked up on her disquieting episodes of forgetfulness and repetitiveness, all appeared well on the outside; she was habitually active and in no physical pain.

But in 2019, the death of her husband finally revealed an insidious problem, ending years of uncertainty. “I went to Nyahururu, Laikipia County after my father died to break the news to my mother. Upon telling her, she rose from her seat and apologised for not preparing tea before heading for the kitchen. I was shocked,” said Esther Njoki an entrepreneur and caregiver.

Njoki had expected her mother to come undone, heave in sobs, and be shrouded in such unbearable anguish for losing a man whom she had called husband for many years.

However, a flat response and puzzled facial expression exposed her unwellness and prompted a unilateral decision to move her from the village to Nairobi for closer observation. “When my mother was in her 50s, I’d notice there was a lot of repetition during our phone calls, she would repeat narrations she had already given me and protest to not having given them. I did not think much about it,” explained Njoki.

Then fast forward to 2019, she failed to process the death of her husband. I even observed her forgetting to light a flame after putting the gas on, and even after the house was engulfed in gas fumes and she could not realise it.

The relocation to Nairobi marked the advent of caring for her mother who would later be diagnosed with Alzheimer’s disease, the most common cause of dementia. Living with her mother, Njoki observed a great change in her mannerism and behaviour. She rambled on, was ill tempered, failed to recognise some family members, and demanded to leave for her maternal home. She also lived in a perpetual state of confusion. “I was confused, because my mother was not in any pain. We did not see it as a medical problem,” said Njoki.

Emotionally and physically spent because of caregiving, Njoki reached out to a friend to unburden herself. The friend alluded her mother had dementia and advised her to seek more information From Alzheimer’s Dementia Organisation Kenya (ADOK).

Dr Sylvia Mbugua, a neurologist at Aga Khan Hospital Nairobi and assistant professor of internal medicine describes dementia as a condition where there is loss of memory, change in personality, and difficulty in planning and executing functions, among other domains. 

ESTHER I was confused, because my mother was not in any  pain. We did not see it as a medical issue.

It could be hereditary

According to World Health Organisation (WHO) data, Alzheimer’s disease is the most common form of dementia contributing 60to 70 per cent of cases. The condition is common in older peopleaged 65 years and above. “Dementia that manifests in younger people (45 years and below) may have a secondary cause, such as Vitamin B12 deficiency or even HIV, which is associated with memory loss. If these are clinically ruled out, then it could be hereditary, which is caused by genetics,” said Mbugua.

“But we advise the public to go to a health facility if they are having issues of forgetfulness. It is not always a case of dementia, it’s important to get the numerous tests to confirm or rule out,” she continues.

Njoki’s interaction with ADOK finally handed her a name to a condition that seemed to erase a part of her mother daily. “I cried the day I reached out to ADOK, because finally, I got to know what ailed my mother, it was also areprieve that I was not the only one going through it. I had a renewal of strength and the future seemed less gloomy,” recounts Njoki.

In ADOK, Njoki found vast support, including access to neurologists who firmed up her mother’s diagnosis, encouragement from other caregivers, crucial information on assistive care, and much more.

Dr Mbugua says that patients clinically diagnosed with Alzheimer’s are prescribed medication and advised on changes to adopt to ensure good quality of life. “We advise them to adopt a Mediterranean diet (high consumption of vegetables and olive oil and moderate consumption of protein) and be physically and cognitively active. The brain is a muscle, if you do not exercise it, you will lose it faster. Patients should play board games, watch documentaries and continue visiting with friends,” said Mbugua.

WHO says there is no known treatment for dementia. However, there are anti-dementia medicines and disease-modifying therapies for Alzheimer’s disease although limited in efficiency. “There is nothing that can be done to prevent dementia, you can only slow it down. Underlying co-morbidities chief among them diabetes mellitus, hypertension, lack of sleep, cigarettes, and living alone can make active dementia worse,” said Kimathi.

Disruption of family

From the onset of active dementia, the family order is destabilised and often the experience may inflict wounds that take years to heal. “Sometimes dad would wake up and claim that he had not been fed by the family for days, other times he’d withdraw money hide it safely for himself and declare it stolen by us,” said Elizabeth Mutunga, CEO and founder, of ADOK.

She continues, “None of the accusations he made were true, he had dementia and so he would eat and forget, withdraw money and forget. His condition invited suspiciousness among us,” she explains. 

ELIZABETH I founded ADOK because I did not want families to go through what we went through for 15 years.

Elizabeth simmered in pain for many years as her father grew more agitated, violent, and indifferent to the degree of denying his paternity.

“Family wrangles are very common in families with patients with dementia, and they can get messy. As a family, you have to remember that it is the condition and not the person. Therefore, you should always give them love and dignity,” said Mutunga. 

DR SYLVIA We advise the public to visit a health facility if they are having issues of forgetfulness.

Mutunga’s father began to exhibit symptoms in 1992 and at some point he was retrenched on health grounds and his behaviour change became more apparent. “He moved us from a fourbedroom maisonette to a mabati house (corrugated iron sheet house). He also began selling parts of his pristine car one by one, which was odd,” she recalls.

Founding Adok

At the time of his dementia diagnosis in 2007, herfatherwas at the tail end of his life. He died two years later. “I founded ADOK in 2016 because I did not want families to go through what my family and I went through for 15 years,” said Mutunga.

World Alzheimer’s report 2021, by Alzheimer’s Disease International (ADI), estimates that 79 per cent of people with dementia are not diagnosed and the number may be as high as 90 per cent in some low and middleincome countries where lack of awareness and stigma remain major barriers to diagnosis.

Mutunga is also advocating for the enactment of a dementia action plan, which will boost efforts to map out and manage the disease comprehensively.

NUMBERS

60,000 - estimated number of people currently living with dementia according to Alzheimer’s & Dementia Organisation Kenya (ADOK).

55.2 million Number of people worldwide living with dementia.

1.9 million the number of dementia cases, the African Region accounts for.

78 million number of people expected to have dementia worldwide in 2030 and about 139 million in 2050.

GAP IN CARE

• There is a gap in access to specialised care in Kenya where only 18 neurologists are serving 48 million Kenyans and nearly all of them are based in Nairobi. There is an influx of patients all coming to Nairobi for consultation and tests.

•Championing affordable care for dementiapatients because as it stands the costs are high. Consultation with a neurologist in Nairobi will cost you Sh4,000 not to mention the cost of diagnosis.