World Alzheimer’s day - We are more than what we remember: An insight into Dementia

• Dementia can affect anyone, irrespective of gender, status and where one is from
• Though dementia is primarily a disorder of older people, it is not considered a part of normal ageing
• A diagnosis of dementia should not be a reason to lose hope and purpose in life
• Though dementia can affect anyone, there are certain factors that make one more likely to develop it
• Age and genetics, however, are things that one does not have much control over
• It is important for people to be aware of things that increase their risk of developing dementia, as well as those that protect them from it
• The genes that one inherits also play some role in increasing the person’s risk of developing dementia or Alzheimer’s disease
• With even little but right kind of support, most people with dementia are able to live normal and meaningful lives as valuable members of society
• Taking good care of one’s mind by feeding it healthy, positive thoughts and exercising it regularly helps promote healthy brain ageing

Memories, one can say, are timeless. They give meaning to our existence and define who we are. Our memories link our past with our present, helping us shape our future. They give us an enduring sense of identity, a strong sense of who we are, and what matters in life.  If a person is to be robbed of his or her memories, not only will it be an emotionally devastating experience for the person affected, but it also takes a painful toll on families and caregivers who have to witness what they see as the gradual loss of their loved one while the person is still alive.   Awareness about disorders that can affect one’s memory is important in terms of not only protecting oneself from developing such conditions but also learning how to “live with the disease” if one is affected. 

What is “Dementia”? 

Dementia is not a specific disease; it’s rather a broad term that encompasses the impairment of not only one’s memory but also the ability to think, reason and make rational decisions. It can range from mild impairment of cognition to severest of stages where one loses awareness of their surroundings and their ability to identify self and others, ultimately leading to marked changes in personality and behaviour.  

Dementia can affect anyone, irrespective of gender, status and where one is from. There are over fifty million people living with dementia at present and someone somewhere in the world develops it every three seconds. This makes it one of the major causes of disability and dependency, particularly among older people worldwide. 

Though dementia is primarily a disorder of older people, it is not considered a part of normal ageing. Its cause, if simply stated, is damage to brain cells, which interferes with their ability to communicate with each other. There are many different types of dementias, classified based on how they are caused, what part of the brain is affected and whether or not they are reversible. Alzheimer’s disease, vascular dementia, dementia with Lewy bodies, frontotemporal dementia and Prion disease are among the major causes. Alzheimer’s disease is the most common form of dementia worldwide, accounting for sixty to seventy per cent of all cases. 

Prevention is better than cure  

Despite numerous research and clinical trials, dementia still remains a condition with no cure. Though the rapidly evolving world of medical science is making great strides in coming up with new treatments to alter the progression of the disease and improve symptoms, a definite cure for dementia is still a farfetched reality. But the good news is that it is potentially preventable. Hence, it is important for people to be aware of things that increase their risk of developing dementia, as well as those that protect them from it. 

Though dementia can affect anyone, there are certain factors that make one more likely to develop it. Age itself is one of the strongest known risk factors. Research has found that a person’s risk of developing Alzheimer’s disease or vascular dementia doubles roughly every five years, once the person is over sixty-five. However, one in twenty cases of dementia occurs in people under sixty-five, which is when it is called early-onset (or younger-onset) dementia. 

The genes that one inherits also play some role in increasing the person’s risk of developing dementia or Alzheimer’s disease. APOE-e4 is one of the first risk genes to be identified and it also remains the gene with the strongest risk. However, these risk genes only increase one’s likelihood of developing dementia but do not guarantee that the person will get it. 

Age and genetics, however, are things that one does not have much control over. But, there are numerous other changeable environmental factors that play a far greater role in increasing one’s possibility of developing dementia. Diet and lifestyle factors are two such things that one may not pay much attention to. Diets high in sugar as well as saturated and trans fats have shown to increase cognitive decline and the risk of developing dementia, while brain-healthy foods rich in micronutrients, like dark leafy greens, cereals, fresh fruits and vegetables help reduce this risk. Chronic medical conditions like high blood pressure, diabetes and heart disease, independently and collectively multiply one’s risk of developing dementia. Hence, getting these conditions under control is an absolute necessity. It’s also vital to get rid of physical inactivity and obesity and ensure that one gets accustomed to an active lifestyle. Building exercise into daily routine reduces the risk of developing dementia by about thirty per cent and even a simple measure like taking the stairs instead of the lift may take a person one step forward on the path to a healthy brain. Poor sleep, both too much and too little, particularly in mid-life, is also linked to dementia.

Getting a good night’s sleep always ‘cleanses’ one’s brain and helps lower the dementia risk. Cigarette smoking too raises the risk of developing dementia by increasing oxidative stress, and current smokers, compared with never smokers, have been found to have a thirty per cent increased risk of developing the condition. It’s important for people to be aware of and get rid of these unhealthy lifestyle factors that put them at a greater risk of developing dementia, because, as the saying goes, our genetics may load the gun, but it’s our choices that pull the trigger. 

Taking good care of one’s mind by feeding it healthy, positive thoughts and exercising it regularly helps promote healthy brain ageing. Regular engagement in mentally stimulating activities like reading, writing, brain-boosting games, learning a new language or playing a new instrument can help build new connections between brain cells in place of the ones that are lost. This increases a person’s “cognitive reserve” or mind resilience and helps delay the appearance of debilitating symptoms even though the condition may be covertly present. An active, trained and disciplined mind is, therefore, a key factor that helps build a dementia resistant brain.

Is it dementia? How does one know? 

The first evidence of the condition is often minor forgetfulness, which may be difficult to tell apart from normal ageing. This may progress gradually during the first couple of years, with the memory of recent events being affected first. Language too is affected early on. The person may find it difficult to construct fluent and informative sentences and even experience difficulty in finding words or naming objects. Eventually, their visuospatial skills may be affected making it difficult for them to perform tasks like copying pictures and finding their way around unfamiliar environments. The person may gradually become disoriented in time, causing him or her to lose track of dates and even bringing about changes in the diurnal pattern of activity. Changes in behaviour may often accompany the above symptoms, making the person restless, confused and disoriented. Confusion itself may make the person fearful, depressed or even aggressive. Sleep-wake cycles may become completely disorganised and self-care and social behaviour may decline, leading to marked impairment of quality of life, ultimately leaving the person in a completely dependent state. 

Caring for a person with dementia 

It may be a traumatic experience for families and carers to acknowledge and come to terms with the fact that their loved one is having dementia. Also, caring for a person with dementia can be accompanied by many emotional and physical challenges.

However, one most important thing to be kept in mind when caring for persons with dementia is that, though the condition robs them of their memories and even their ability to care for themselves, they are not robbed of their right to be treated with love, respect and dignity. Though dementia can affect different aspects of memory, it leaves one’s emotional memory and intuitive thoughts more or less intact. Thus, a person with dementia may retain their capacity to feel and understand human emotions like joy, sadness and fear, and connect with others, as any other person would do. Ensuring not only the physical but also emotional safety of the person is, therefore, a prime concern when caring for someone with dementia. Little things like taking care not to be dismissive of them, asking them how they prefer to be helped, active and attentive listening, making instructions clear and understandable, asking simple, answerable questions and repeated reassurances that they will not get hurt can help a lot in making the person feel emotionally safe. 

Ensuring adequate nutrition and regular exercise, maintenance of personal hygiene and making them feel clean and comfortable, prevention of infections and pressure sores, attending to comorbidities and having chronic medical conditions under control, keeping doors shut to prevent wandering, and measures to prevent falls like grab bars and handrails are some vital aspects of physical care. 

Wise scheduling of activities, developing habits and routines that are easy to follow, repeated reorientation using clocks and calendars, labelling important items, posting messages, and planning activities that improve thinking are some other important things to be considered when dealing with the person’s memory loss. 
A diagnosis of dementia should not be a reason to lose hope and purpose in life. In fact, a strong belief that a person with dementia can still live a meaningful and fulfilling life enables a holistic approach of care that focuses on the entire person and allows and honours independence as much as possible. 

You are not alone! - Support Groups

At present, persons with dementia and their families have better access to various forms of support and care that go beyond conventional institutionalisation.
There are organisations that not only support and address the needs of persons diagnosed with dementia and their families but also help reduce the precipitating factors that lead to the deterioration of the condition and ultimate institutionalisation

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The “Lanka Alzheimer’s Foundation” ( LAF) is one such organisation that has worked tirelessly since its inception, to improve the quality of life of those with Alzheimer’s and related dementias, and enhance the well-being of their families and carers. It provides a variety of services with the ultimate goals of creating better awareness and improved understanding and acceptance of dementia, and supporting persons with dementia and their families to live well with the condition.

The LAF’s “Activity Centre”, which commemorated its 10th anniversary on September 21, 2021, is a place that has been able to bring out an amazing emotional response in persons with dementia. The Centre provides a range of stimulating activities to its “clients” and helps create an atmosphere filled with joy and laughter, which in turn brings out a remarkably positive response in its clients. The volunteers use a personalised approach when planning activities, with their client’s abilities and preferences in mind, and strive to create a warm, friendly environment where the clients are treated with love, care and respect. The LAF also offers “The memory assessment” which enables early detection of problems in memory and other brain domains and early referrals for appropriate comprehensive evaluation. The foundation also conducts awareness programmes with the intention of removing the stigma attached to dementia and improving its understanding and acceptance, which in turn enables better socialisation and enhanced quality of life for persons with dementia.

Dementia and COVID-19 

The Covid-19 pandemic can be quite challenging to persons with dementia as well as their families and caregivers due to multiple reasons. The majority of people with dementia are elderly with underlying medical comorbidities that increase their risk of being infected with COVID-19, as well as developing severe disease and serious complications. Moreover, it can be difficult for them to comprehend, comply with and recall safety measures like hand washing, wearing face masks and other protective equipment, which further increase their risk of getting infected. Also, the daycare centres and activity centres may close, and visits from family and friends may become infrequent during the pandemic and this disruption of routine and lack of brain stimulation can lead to increased confusion and cognitive deterioration. This can be a trying time for caregivers as well, who will have the additional responsibility of ensuring the safety of themselves, their loved ones and also the person they are caring for. 
It is important that people with dementia as well as their caregivers, get vaccinated against COVID-19. Adhering to safety measures and taking all necessary precautions while caring for the person is of utmost importance, particularly since they are at an increased risk of being infected. They may need additional reminders and extra written commands to remember the recommended hygienic practices. Caregivers should also be aware that older adults with COVID-19 may not always show typical symptoms like fever and cough and therefore should keep an eye out for possible initial symptoms of illness like increased confusion or other sudden changes in behaviour, and contact the relevant health care providers for advice. It’s best to set and stick to a daily routine with consistent wake-up, eating and sleeping times and schedules that will help them stay busy and engaged. Ensuring pleasant, meaningful tasks and interactions will help improve your loved one’s mood and sleep, and reduce challenging behavioural symptoms. Also, the caregivers should never forget to take some time to care for themselves, as best care for their loved one stems from a healthy mind and body of their own. All these will collectively help to provide a person with dementia, the best possible care amidst constraints and restrictions imposed due to the pandemic. 

A different view of dementia- We are more than what we remember  

One most complicated and problematic myth that exists in society is that dementia takes away one’s chances of living a normal life. This, however, is far from the truth. With even little but right kind of support, most people with dementia are able to live normal and meaningful lives as valuable members of society. Living well with dementia largely stems from the concept of strength-based care that focuses on one’s ability and the contribution one can make rather than what the person can no longer do. Realistic positivity and a strong belief that one is more than his or her limitations can keep the person, family and the entire society moving forward towards productivity amidst constraints imposed by dementia. 

The writer is a volunteer doctor at the Lanka Alzheimer’s Foundation.