When a Loved One Has Dementia
They say that as you grow older, you cherish the moments you spent in life; even moments you initially thought were inconvenient or insignificant. But what if you had lost the ability to do any of this?
Dementia is an umbrella term for a syndrome involved with neurodegenerative disorders which debilitate cognitive behavior to varying degrees, including severe memory and communication difficulties as well as other problems in thinking skills, according to the World Health Organization. The risk of dementia increases exponentially with both age and genetic factors, and onset may be as early as the late 20s. It has emotional ramifications that reverberate into familial life and community structures.
According to an article written by the Alzheimer's Society, memory loss associated with dementia is more severe than forgetfulness caused simply by old age. Regular forgetfulness could involve you forgetting that you had lunch with your cousin today, but dementia could cause you to not even recognise your cousin anymore.
"Limited access to quality care and specialist physicians made it more likely to ignore symptoms rather than misdiagnose," says Dr. Ajay Kumar Agarwalla, Registrar (Neurology), Mitford Hospital. "Dementia is a result of many underlying disorders, some treatable, some not. So, a possible degenerative cause can often be missed due to limited resources and lack of specialised investigation involving new biomarkers."
Indeed, recognising dementia can be difficult, as expressed by Maisha Al Ahmed*, a senior-year student at BRAC University, who spoke of her experience with her grandmother and how things initially went unnoticed, "She would forget what she had had for breakfast or what the name of her eldest son was. We thought it was because of her old age." She added how things changed when one day her grandmother approached her, accusing her mother of theft.
The accusation was regarding a stolen dress, as described by Maisha, "My grandmother continued to accuse my mother, as well as other family members, of similar crimes which never took place. Soon, my father and his siblings decided to take my grandmother to a psychiatrist and then to a neurologist. It was after these consultations that they learned of her dementia."
For many, dementia is a reality beyond statistics and reports; it is the loss of self with the regression of the disease, and the paradox of seeing a loved one fade while their body remains. "As a family member or close one, it feels heartbreaking to look after the person you have known for decades but doesn't remember you anymore and see them growing weaker and more helpless with time. You would constantly feel like getting the shorter end of the stick -- and powerless to make things better," adds Shadman Muhtadi, 21, student of IBA, University of Dhaka.
Shadman also had difficulty with the initial identification of dementia in his grandfather. He recalls, "My grandfather started showing symptoms of dementia, but it took around two years to clinically announce he had the disease. My parents initially thought it was just his age showing and thought it was some common geriatric issue. The thought that it could have been dementia hadn't crossed our minds until further neurological tests were conducted."
Once the initial problem of identification is over, other hurdles of learning to cope with the changes begin.
Tazree Hassan, 24, a pharmacy student, recalls how difficult things were initially in the case of her grandmother.
"Frankly it wasn't quite easy at the start. After her coma we expected that she wouldn't come out all the same. Yet, it was still difficult, especially for her children. She forgot things to a point where she thought of herself as a child. Sometimes, she would suddenly recall people my parents didn't know much about and forget them just as quickly," she says.
While dementia, as a progressive illness, comes with its own set of struggles, lack of knowledge and extensive stigma has by far proven to be a bigger hindrance to raising awareness, ultimately delaying people from seeking help. Although most causes of dementia cannot be cured, drugs are prescribed to slow decline and/or mitigate symptoms pertaining to the specific disorder diagnosed. Dr. Ajay Kumar Agarwalla has the opinion that dementia research may be more focused on replicating existing compounds and developing diagnostic tools rather than looking into novel drugs.
The internet, often the first source people turn to, is largely responsible for creating a negative impression of dementia, leading to the unfair treatment of those affected in their homes, in the community, and even in medical settings. Care systems may concentrate on dementia as a whole rather than the singular needs of individuals, effectively reducing them to distressing images perpetuated by the media, stripping them of their identity and personal history. However, this stigma rarely stems from ignorance alone.
Nevertheless, many family members continue to find ways to better understand and help loved ones with dementia, as explained by Tazree.
"It took a lot of talking and many years of treatment to get my grandmother to her current state. There are times when we would ask her questions as a way of helping her practice to remember things and sometimes, she would surprise us, by remembering hard verses from the Qur'an or Tagore's poetry. We, as family, kind of grew to understand her better so that the experience gradually became less painful. I guess what was truly difficult was learning to accept the fact that someone is no longer the same as a person," explains Tazree.
Sometimes, because of concern over regarding the existence of proper facilities and the quality of training of those taking care of patients in actual healthcare facilities, family members choose to take care of dementia patients themselves.
Looking back on the days she was her mother's primary carer, Halima Katun*, a housewife aged 44, says, "Somedays, it was like being a parent all over again. You could show her something, and then again and again. She would cry, and you would send her to sleep. You could tell her something, come back a minute later, and she would be asking the same thing again. She's my mother; I know I love her, but I lose my patience at times. It was hard watching her getting frustrated at herself."
While it can be exceedingly difficult for the caregivers, it is imperative for them to help those affected to accept their diagnosis, plan for the future, and stay as active and engaged as possible. Simple acts of kindness – asking them about their day, what they had for a meal, making small talk – go a long way in keeping their spirits up. Involving them in daily activities to their capabilities will not only uphold a sense of structure and familiarity, but also establish a routine to help orientate the person with dementia.
Apart from medication, lifestyle changes to stay socially and mentally active will preserve brain health and may slow the decline. When cognitive functions decline further, making time to connect with them by reading to them, playing their favourite music, talking, even if they may not be able to express it, will support their emotional well-being.
"You've got to remember how much they loved you and cared for you when they didn't have the disease", Shadman adds. "Even if they would forget it in a while, trying to make their situation better just for a moment would be well worth repaying them for their affection towards you."
*Name has been changed to protect privacy.
1. World Health Organization (September 21, 2020). Dementia.
2. Alzheimer's Society. Normal ageing vs dementia.
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