PERCY ANI writes on the plight of families caring for loved ones battling dementia
Nothing prepared a businesswoman, Rosemary Nnamani, for the role she had to play in caring for her father when he developed dementia.
The businesswoman told our correspondent that when her father took ill frequently, her family linked the situation to old age.
She stated, “My brother and I thought it was one of those quirks associated with old age. He was already in his 60s and like other aged persons, needed more medical care, but it dawned on us when he started having a hard time remembering basic things such as our names and faces.
“I was concerned so he moved in with me. How could my father, the strongest man I know, be so sick that he could not recognise my face or even remember my name? It broke me when one day, he saw my daughter but couldn’t recognise her. She went to play with him as she always did, but he called her by my late mother’s name – he was lost in another world, a world which none of us could reach.”
She said it was clear he was struggling to hold on to the last bits of memory but every new day, it seemed like he was losing the battle.
“When we took him to the hospital, the doctors confirmed our fears – our father had dementia. Even though we suspected the outcome, it was a tough pill to swallow. Tougher still because I was lost on how we could provide care for him. I used to cry myself to sleep almost every night.”
On the international scene in August 2014, the world woke to the shock of the death of famous Hollywood actor, Robin Williams. The much-loved actor was found dead hanging in his home. With speculations as to why he had killed himself, an autopsy was conducted that showed he was suffering from Lewy body dementia, the second most common cause of dementia after Alzheimer. According to his widow, it was the debilitation from this brain disease that led him to suicide.
For relatives, who have to care for their aged family members suffering from dementia, it can be burdensome. Although according to some, the burden is lightened by memories of love shared between them and their now ailing relatives.
Caring so taxing
According to the Alzheimer’s Association, providing care for people with dementia is largely provided by family members and occasionally community care-givers. Both groups, since they lack expert knowledge in handling the disease, are burdened from the stress of providing care to their loved ones.
Nnamani also said that after her father’s diagnosis, she and her brother made plans to hire a nurse to care for her father which her relatives protested against.
“One of them said it was a sin against God and the Igbo tradition for children to shirk in their duties to their aged, frail parents so I had to fully care for my father. Luckily, I own a shop in front of the house, so it was a little easy running my business while keeping an eye on my father,” she said.
Thomas Ajayi, like Nnamani, said he was at sea when his mother one day asked him who he was and what he was doing in her house.
“It was so surprising. I had never seen anything like that before,” he said.
The woman is in her 60s and owns a small grocery store a few streets away from the house and occasionally wanders back there when no one was around to keep watch on her.
He stated, “One minute she was my mother, healthy and in control; the next day, she was roaming the streets. There were days when I would be at work and get a call to come get my mother.
“One day, I got a call from a friend that he was with my mother and I should come pick her up. When I got there, I saw her half-naked. I cried all through that day. Seeing my mother so helpless broke something in me.”
A schoolteacher, John Mudiaga, said that his sojourn into caring for a relative suffering from dementia began after his grandfather died and his grandmother, after a few months, started behaving oddly.
He said, “With the tragedy of losing her husband, something went wrong in her head. She would cook and put the food under her bed, and after three to four days, when the food might have gone bad, she would call me to eat, as in her words, ‘The food just got ready.’
“She started losing track of time and place and faces many times. The family knew something was wrong with her but needed some confirmation. When she was taken to the hospital, the doctors said she was suffering from dementia, which might have been accelerated by repressed grief.”
Mudiaga stated that his grandmother would leave the house most days to sit at her late husband’s grave.
He said, “She would stay there all day and sometimes, even sleep beside his grave conversing with no one in particular. It was an extremely dark time for everyone in my family.”
Dementia in Nigeria
Online sources define dementia as a clinical syndrome caused by neurodegeneration and characterised by progressive deterioration that affects memory, thinking and social abilities severely enough to interfere with daily life. Alzheimer’s disease is the most common cause of progressive dementia in older adults.
The occurrence of dementia in low- and middle-income countries is closely linked to the aging population and thus, may continue to rise.
In a recent report by the World Health Organisation, 50 million people suffer from dementia globally, and with one new case every three seconds, the number of people with dementia is set to triple by 2050.
In Nigeria, several communities still link dementia to a normal process of ageing, with many patients suffering the dyadic tragedies of stigmatisation and abandonment in the belief that their condition is beyond any medical intervention.
A 2019 survey on mental health in Nigeria by Africa Polling Institute and EpiAFRIC noted that awareness of mental health is low in Nigeria. Some people believed that it was commonly caused by drug abuse or possession by evil spirits, noting that patients, if taken to a prayer house for spiritual interventions, might get better.
Ajayi added, “Sometimes, I heard snide comments from neighbours in my community saying my mother was a witch or had offended some higher spiritual force and was paying for it.
“I took her instead to a prayer house where we were told it was a spiritual attack. I later took my mother to the hospital where it was confirmed that she had dementia. It took almost a year after she was diagnosed with dementia for me to accept that there was nothing left for me to do other than care for her the best way possible. Things got easier when I accepted reality. I realised that all the time I had wasted searching for a cure could have been spent keeping my mother company and making new memories. I spent almost all I saved.”
Mudiaga stated that the societal reaction to his grandmother’s ailment was terribly painful as she was distanced by people who were once close to her.
“Some people said she was a witch wrecked by the guilt of killing her husband while some others said she was a mad person that was being punished by someone she had offended. Truthfully, as a young child, those statements got to me and I became afraid of her,’’ he stated.
Psychological effect on relatives/caregivers
In an assessment by the 10/66 Dementia Research Group, it was found that one of the main differences between caregiving in the developed and developing world is the living arrangements – persons with dementia in developing nations live in houses with their families, whereas in more developed climes, they largely stay in old people’s homes.
Seeing as most of the old people’s homes in the country are expensive and ill-maintained, it is not surprising that most dementia patients have to be cared for by their relatives and caregivers who are largely inexperienced.
Balancing caregiving with other demands, including parenting, career, and relationships takes an immeasurable toll on relatives who’re saddled with the duty. They are at increased risk of burden, stress, depression, and other health complications. Reports stated that caring for a person with dementia was more stressful than caring for a person with a physical disability.
Nnamani noted that caring for her father took a toll on her health and business.
She said, “In the early stages, it was like raising another child. At one point, my blood pressure spiked. I had to make sure he took his drugs regularly, bathe him, cut his hair and feed him. There were days when it was easy, and some other days, he’d be aggressive.
“He couldn’t be left by himself. I had to always monitor him so he wouldn’t harm himself. I could not travel for business anymore. I had to pay for my goods to be sent to me, making me to incur more financial losses and running the risk of being cheated by suppliers. Caring for him meant certain aspects of my life had to be paused.’’
She said there was a time her father tried to jump down from her balcony on the second floor of the building.
“I have never run as fast as I did that day. Until his death, every moment I spent away from him, there was always a dark cloud of fear lurking in my heart that forced me to rush back home,” she stated.
Nnamani also noted that even after his death, the effect of her father’s sickness still pervades every facet of her life.
“There are times when I forget certain details or lose my train of thought and I start to worry if I am not developing the same ailment. I can’t imagine losing control of my physical and mental state and having to depend on others for my wellbeing,” she added.
On his part, Ajayi noted that his mother’s ailment took a huge toll on his family.
He said, “It affected my marriage as my wife was the one who helped to care for my mother when I went to work. She had to employ a salesperson to manage her business while she took care of my mother. Eventually, she couldn’t bear it anymore. Even as her son, taking care of my mother was daunting.
Ajayi added that he couldn’t afford to leave his mother by herself as he feared something untoward might happen to her as she was not in control of herself.
“I couldn’t concentrate at work as I would be plagued by worry. Many occasions, when left unattended to, she would go to shops and take items on credit. Luckily, most of these shop owners knew her before she became sick so they would wait for me to get back from work to collect the money. To avoid any form of embarrassment, I had to drop a certain amount of money with the people weekly and balance them at the end of the week,” he said.
Ajayi noted that his mind was scarred already by his mother’s travails and he worries whether he won’t suffer a similar fate.
“There is no day I don’t worry if the same won’t befall me. When I can’t remember the smallest detail or event, I immediately start to worry, thinking it might be the onset of dementia. I can only hope this sickness is not hereditary. I can’t imagine my daughters having to provide care for me because I am no longer in control of my senses,” he said.
Also, Mudiaga said as his grandmother’s mental health continually deteriorated, she had to be monitored to prevent her from hurting herself.
He said, “She was an energetic woman who couldn’t accept being cooped up. She wanted to walk around town and be free. Though it wasn’t her fault, her ailment consumed the entire family. It seemed like we were walking on egg shells and living only for her. Till date, I still nurse the fears that it might happen to either of my parents or even to me when I grow older.“
Cost of caring for dementia patients
According to the Alzheimer’s society, the worldwide direct costs of dementia, estimated in 2003 to be $156bn, representing over $5,000 per demented person, are a fraction of the total costs. Medical consultations, investigations, pharmaceuticals and provision of personal and nursing care are some examples of the direct costs.
Even though there is no accurate data for people who suffer dementia in Nigeria and the cost to their families, some of their relatives opined that caring for their sick relatives cost them a lot of money.
Ajayi said, “Eventually, I had to hire a nurse to care for my mother. Incurring another cost I could not afford. To worsen matters, my mother fell sick and when I took her to the hospital, the doctors diagnosed her with diabetes. I was already on my last legs financially and this further worsened things. At one point, I had to start borrowing money from loan agencies to finance my mother’s medical bills. Even now, I am still servicing some of the loans. But I had to do it. My mother gave a lot to raise me and my siblings after we lost our father early in life, so spending money to cater for her health needs, even though uncomfortable, was worth it.”
Nnamani also said that the financial toll of caring for her father sliced off a significant chunk of her savings. She said, “My father used to always fall ill and this meant I had to be deliberate with his diet and buy the drugs prescribed by the doctors. The money I made from my business, instead of ploughing it back, I had to spend it on my father’s health. Thankfully, my brother also helped out in his way.”
Mudiaga stated that caring for his grandmother ate hugely into his parents’ resources, sometimes leaving the family in dire straits after paying for her medications.
Light at the end of the tunnel
Daunting as it is caring for relatives with dementia, there is a silver lining. Many people who have to care for their relatives with dementia usually have some memories to treasure.
Nnamani recalled, “There was a time my brother and his family came to visit. He came with his wife and kids and seeing his entire family gathered somehow improved my father’s health. He told stories of how as a young boy during the civil war he managed to escape getting killed multiple times. Seeing him full of life and in control of himself brought tears to my eyes that day.
“A month after, he died. But I’m glad that I have the image of that night as my lasting impression of him. Whenever I think of him, I try to picture him as he was that night; happy, in control and the consummate family man that he always was.”
Ajayi also remembered that in the last months of his mother’s life, he started spending more time with her and sharing memories.
He said, “My mother loved watching Yoruba movies, so on the advice of her doctor who advised me to try engaging her more often, I started buying movies and watched them with her. I’m not sure she completely understood what she was watching, but sometimes, I would see a smile on her face and that always made me happy. Some other days, when I could manage to get home on time, I took long strolls with her and let her talk about anything even if I didn’t exactly know some of the names and places she spoke about.
“I am glad I spent that time with her. It helps me to remember her and the happy moments we spent together with my daughters in her last days. The dark cloud of anger and pain hanging over me when she first became sick was deflated by those pockets of happiness.’’
Mudiaga noted that over time, his family observed a routine with the care of his grandmother and quickly got over any inconveniences they might have conceived in the past.
He said, “My grandmother was the sweetest person I ever knew. There were certain days when she would be in a cheery mood and would sing, dance and tell us stories. Those were some of the best moments of my childhood. Aside from the happy moments, the need for a concerted effort in caring for my grandmother inadvertently created a bond that was not there before in the family. Even now, years after her death, that bond still remains.”
The families maintained that though they were happy catering to the health of their loved ones, it was financially draining.
Nigeria’s mental health report
According to the World Bank, the population of Nigerians aged 65 and above was reported at 2.7381 per cent in 2020. Over the last 50 years, this demographic has grown substantially from over one million to over five million persons rising at an increasing annual rate.
With dementia cases estimated at over 318,000 in Nigeria in 2015 according to research by the Journal of Global Health Reports, it is safe to suggest that cases of dementia may have gradually increased in the country in the last few years.
Ironically, even with the increasing number of mental health cases in the country, there aren’t adequate laws and infrastructure to cater for patients with this issue. Other than the Lunacy Act of 1958, there are no other mental health laws in Nigeria. The law is not only antiquated but also a reminder of how little is understood of mental health in Nigeria.
In 2003, a Mental Health Bill was proposed to the National Assembly but with little support and no progress for more than six years. It was withdrawn in April 2009.
Again in 2013, the bill was re-introduced to the National Assembly. The bill set out the principles for the delivery of care to people with mental, neurological, and substance abuse problems. However, facing little or no support from legislators, it has yet to become law.
In 2016, a neuropsychiatrist, Dr Maymunah Kadiri, appealed to Nigerian lawmakers to accelerate action on the mental health bill, stating that Nigerians see mental health as a taboo because the country still adhered to the lunatic act of colonial legacy.
Commenting on the issue, a lecturer at the Nigerian Law School, Kano campus, George Ibekwe, noted that lawyers and other stakeholders both medical and non professionals would have to embark on relentless advocacy and public enlightenment on the inherent benefits of a reworked legislation and its utilitarian value.
He said, “Undoubtedly, a 1958 legislation cannot serve the needs of the millennium, not with the advancement in all facets of human endeavour as well as the ever elastic definition of fundamental human rights. My charge to all the stakeholders is to continue pushing the envelope until the National Assembly comes to the realisation that this bill for an Act ought without further delay be subjected to requisite bill analysis and public hearing preparatory to its passage and subsequent presidential assent.”
Also, Medical Director, Federal Neuro-Psychiatric Hospital, Yaba, Lagos, Dr Oluwayemi Ogun, stated that caring for patients with dementia could be traumatic for the caregivers and its effect on them was largely unexplainable.
Ogun added that since healthcare welfare packages were unavailable in the country, children of the patients were the ones who cared for them.
She further said that other than the worry and financial costs of caring for relatives with dementia, the inability of people suffering dementia to recognise their relatives could be quite painful.
“Patients with dementia not being able to recognise their children and other relatives can be quite traumatic for the relatives. There are many cases where people express deep sorrow saying they never expected their relatives to develop dementia. These thoughts can affect the psychological state of these people,” she stated.
Ogun added that with the country’s economic situation, it was doubly difficult catering for such relatives.
She noted, “The poor economic status of some of the families might not enable them to provide adequate care for their sick relatives. Many times, by the time the health of the patients deteriorates, they will require the services of nurses or caregivers. Not many people can afford this. This burden is sometimes more than they can handle.”
Lamenting lack of commitment on the part of the government towards mental health, especially with the archaic mental health law and funding for the care of patients, Ogun said, “As the population gets older, there will be a need for better staffed and equipped old people’s homes. Many of the old people’s homes in the country are not properly maintained and lack many vital things.
“Many old people with dementia tend to have other ailments, such as diabetes and high blood pressure, so there is a need for adequate resources to cater for them. People are getting poorer and this can help lessen the burden.”
In his comment, a behavioural psychologist at Remz Research and Consultancy, Uyo, Akwa Ibom State, Usen Essien, said that most sufferers of dementia lack knowledge of what they were undergoing as the disorder affects the ability of the brain to remember faces, events and names.
He said, “This causes an expected amount of pain and anger in relatives who are saddened by the inability of the sufferers to recognise them. This sadness can sometimes lead to grief and depression.
“However, in cases where the families finally accept that their relatives have dementia, it improves not only their mental state but also dispels any form of animosity they might have felt. Acceptance leads to a lessening of the feelings of depression and anxiety which in turn helps the families to provide even better care for their sick relatives.”
Essien stated that the paucity of funds to finance mental health institutions in the country further exacerbated the burden of handling such cases in the country.
He added, “With better funding, relatives of persons suffering dementia can be assisted in their welfare. At present, many people cannot afford to pay for helpers to care for their relatives with dementia, but with improved funding, they can have access to better health services.”
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