“We could see something was wrong,” says Haya. “Over a few years, Papa was gradually getting confused and losing interest in a lot of things, such as books and music, which he was previously enthusiastic about. He was also becoming obsessive about certain things like locking the front door and then checking again and again, worrying about whoever was out of home for work, or errands.”
Hamid’s story
Her father Hamid, 80, an engineer by profession could not drive anymore as he was often disoriented, would miss a turn and have difficulties in finding his way. His arthritis was worsening, and his family was worried that he might get in an accident. Hence he spent most of his time at home, and then the pandemic happened.
“Out of the blue, he would say that the body of so and so (mostly naming some long dead relative) was in the other room and he wanted to go there to offer fateha, because he would not be able to go to the graveyard, etc,” says Haya. It was the initial phase of Covid-19, so we thought it was because he was watching too much news on TV, all about death and disease. We began to limit his news consumption by changing the channel or switching off the TV.
“When his confusion and forgetfulness increased and imagination became wilder, we consulted a doctor who diagnosed dementia,” she says, almost in tears as she had always been close to her father and considered him her pillar of strength. Prior to his illness, she would discuss everything with him and sought his advice in all matters, but now it was not possible.
Caregivers’ plight
Haya is not the primary care-giver, her mother is. Her parents are very close to each other — true soul-mates. It came as a heavy blow to her mother when the doctor said that there is no cure for dementia. Perhaps she had thought that the doctor would give some medicine and he would be on the path to recovery.
“We hired an attendant as due to arthritis he cannot walk and needs assistance to go to the washroom or from one room to another, but he still wants Ami to tell him what he should be doing, wouldn’t start his meal until she has started, and worst of all would not allow anyone except Ami in his room at night,” says Haya. “It wouldn’t have been as much of a problem if he was sleeping the whole night, but that is not the case. He wakes up after little sleep and wakes her up too, and gets agitated if she says that she wants to sleep and he too should try to go back to sleep.”
Hamid had a severe reaction to the medicine that the doctor prescribed to help him sleep and since then he has refused to prescribe anything else for sleep. “Now he is awake half the night, sometimes the whole night, wouldn’t let Ami sleep asking her to wake up and do some work, and would not tolerate a night attendant, he would talk of things which make no sense and would get upset and agitated for no reason.”
Even during the day, he wants some family member to be around to answer his needless questions and rambling, and gets agitated if he does not get a response.
Haya works from home and has flexible timing. Seeing her father like this, she feels overwhelmed and finds it difficult to work. “One feels miserable seeing a loved one like this and not being able to do anything to help them,” she says.
“It is a difficult situation for caregivers,” says Dr Jafri. It is important to understand that providing care and support for a person living with dementia can be challenging and impacts their health and well-being. “Caregivers are at risk of suffering from depression and anxiety due to which they may fall sick; they are at risk of developing dementia themselves,” he adds. “It is important that all family members should be educated about the disease and know how to handle the patient. The burden of care should not fall on just one person but other family members should also share the responsibility. The caregivers need to be trained in how to look after the patient. Don’t talk about things that are best forgotten and may upset the patient.”
It is important for caregivers to look after themselves and take regular breaks, and try stress management techniques, such as mindfulness-based exercises.
Dementia has physical, psychological, social and economic impacts, not only for people living with the disease, but also for their caregivers and entire families. Unfortunately, people, especially in our part of the world, often lack awareness which leads to stigmatisation and barriers to diagnosis and care.
Since many of Haya’s friends have at least one parent suffering from dementia, Haya is on a quest to get to know the whys and hows of the condition, so if possible, she could manage her father better and also protect herself from being a victim of this horrible disease.
Design by: Ibrahim Yahya
What is dementia?
She read up that dementia is caused by a number of diseases which over time destroy the nerve cells and damage the brain, and affect memory, thinking and the ability to perform daily activities. The deterioration in cognitive function (i.e. the ability to process thought) is more than just the usual consequences of biological ageing. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by changes in mood, emotional control, behaviour, or motivation. It mainly affects older people, but not all get it as they age. Many aged people retain their cognitive abilities till the very end.
“The causes of dementia are unknown and not clear,” says Dr Hussain Jafri, Secretary General, Alzheimer’s Pakistan. “But there are certain factors that lead to developing dementia. Social isolation plays an important role, while depression and hearing impairment can also be the contributing factors as do alcohol use, diabetes, high blood pressure and brain injury.”
The disease worsens with time, and a stage comes when people with dementia may not be able to recognise family members or friends. They develop trouble eating and drinking, lose control over their bladder and bowels, and experience behaviour changes such as aggression and irritability.
Fast and frequent
Dementia is being noticed and diagnosed quite frequently these days. According to the Alzheimer’s Disease International website, “Someone in the world develops dementia every three seconds. There are estimated 50 million people worldwide living with dementia and will almost double every 20 years, reaching 75 million in 2030 and 131.5 million in 2050. Much of the increase will be in developing countries. Already 60 percent of people with dementia live in low and middle income countries, but by 2050 this will rise to 71 percent. The fastest growth in the elderly population is taking place in China, India, and their south Asian and western Pacific neighbours.”
Who does it affect?
Dementia mainly affects older people, although there are a number of cases where it started before the age of 65. According to reports, every year, nearly 10 million new cases are added. Dementia is currently the seventh leading cause of death and one of the major causes of disability and dependency among older people globally. Alzheimer disease is the most common form of dementia and may contribute to 60–70% of cases and affects men and women, all races, and all socioeconomic groups equally.
“Though genetic factor cannot be ruled out, it is not significantly high,” says Dr Jafri says. “Everyone is at risk after the age of 65 and the chances increase with age. Presently it is believed that there are about 400,000 patients in Pakistan, but since we do not have a patient registry in the country, the exact numbers can’t be given. In future is will increase as the population grows. At present there is a vast youth bulge and when this population grows old, age related problems will increase.” Increase in life expectancy is also expected to increase the prevalence of dementia.
Because dementia is a general term, its symptoms can vary widely from person to person. “Recent memory loss is the first and foremost symptom,” says Dr Jafri. “Although associated with old age, all old people do not have this problem. “Repeating is also a symptom, but it is associated with recent memory loss as the person does not remember saying the same thing a while ago and so keeps repeating.”
Common symptoms
Other symptoms may include lack of interest, losing track of time, poor sense of direction, being confused even in familiar places, difficulty solving problems or making decisions, having problem following conversations or trouble finding words, problem with reasoning, judgment, and problem solving, etc.
Since no two patients are similar, each show different characteristics and behave differently and, hence, there is no one glove fits all solution. And with no treatment available, management is mostly on day to day basis and taking care of their general well-being.
“There is no cure for this disease. There are a few medicines which can slow the downhill process in certain people, not all, in the earlier stage,” says Dr Jafri.
Care at home
“It is important to keep the patients physically active; it will improve their quality of life,” he says, lamenting that in our culture, anyone who is not well is just made to rest. “This does not hold for dementia patients, they need to be active and need care 24/7. Give them a safe environment and take precautions to reduce chances of accidents. It is important to not discuss anything with them that might disturb or depress them.”
Preventive care
We should not forget that the best time to take care of ourselves is while we are young and in the prime of health. Taking care does not mean just physical health, but mental health as well. It’s never too early or too late to take care of your brain.
Brain health is affected by many factors throughout the life, which include how secure someone feels at home, whether or not they’re experiencing a mental health challenge such as depression, their level of financial freedom, etc. One habit or factor cannot be isolated as the cause of cognitive decline.
“Healthy lifestyle reduces the chances of dementia,” says Dr Jafri. “Regular exercise, maintaining a healthy heart, absence of diabetes and high blood pressure, and an active social life are important in reducing the chances of developing dementia.”
Dr Sanjay Gupta, Neurosurgeon and CNN correspondent, and author of Keep Sharp: Build a Better Brain at Any Age (2021), identifies five main contributors to brain health that people can control: being more active, keeping the brain stimulated, getting restful sleep, nourishing the body, and having a vibrant social life. (https://www.brainandlife.org/articles/dr-sanjay-gupta-gives-advice-to-improve-brain-health)
The experts appear to be unanimous in saying that if we need to retain our cognitive functions and lead a fully functional life till the end, we will have to take care not only of our physical health but our brain health as well. It is all the more important for people like Haya and her mother who are going through the stress of taking care of a person living with dementia.
The writer is a freelance journalist and tweets @naqviriz; she can be reached at naqvi2012rizwana@hotmail.co.uk