As we are already aware of India tending to be the most populous country in few years, another hideous problem follows us through. India is graying rapidly and is considered to be among the top ten countries ageing at the fastest rate. Once known as ‘the country of the young’, the trends are changing. UN and Help Age statistics show that the elderly population (above 60 years age) in India will rise to 16 percent in 2040 and 24 percent in 2050, from the once 8.6 percent in 2011. This rise is steady, and it was recently stated in the Parliament that around 35 crore 60-plus population is estimated in 2050, which is more than the total population of many other countries.
This increase in elderly population definitely shows the positive effect of life-expectancy. However, it brings in the concerns of multiple age-related physical, medical and social problems: one of the deadliest of which is dementia, an illness of the brain known for the symptoms of gradual loss in memory and other cognitive abilities (brain-related functions like attention, judgement, understanding, speech, direction sense, social behavior), that creates immense financial and social burden for the affected and their families alike. Alzheimer’s disease is the commonest form of dementia. Even though it is well-mentioned in the digital and printed media, myriads of myths and misconceptions related to this illness create unnecessary stigma and barriers for help. According to the Alzheimer’s Disease International group, 2 out of every 3 people have little or no understanding of ‘dementia’ in their respective countries, needing an urgent global action.
September is marked as the World Alzheimer’s Month, as a part of the International Campaign for awareness about this illness, an initiative that started in 2012. This World Alzheimer’s Day, 21st September, let us bust some specific myths about the illness and join hands in fighting this global problem.
Q: What is Alzheimer’s dementia (AD)?
Ans: It is an illness of the brain, that is commonly seen in people above 65 years. However, it can also start early (after 55 years) and rarely very early (after 45 years). It is the MOST COMMON type of dementia.
By dementia we mean a condition in which the brain slowly but steadily loses its capacity to function. Memory is mainly affected, however speech, thinking, judgement, sense of direction, social reactions and behavior all can get affected. Dementia can be caused by a multitude of illnesses including uncorrected hypothyroidism, Vitamin B12 deficiency or persistent head injuries. AD is only one of the types of dementia.
ALL AGE-RELATED FORGETFULNESS ARE NOT DEMENTIA. DEMENTIA IS A MEDICAL CONDITION AND IS NECESSARY TO BE DIAGNOSED BY A QUALIFIED MEDICAL PERSON.
Q: Are all dementias caused by AD?
Ans: NO. But most of them. The exact type of dementia is scientifically confirmed by the kind of abnormality in the nerve cells at a microscopic level (which can only be done after death). It can roughly be estimated by the age of onset, course and type of symptoms, the speed of progress and the appearance of the brain on CT or MRI scan.
Besides AD, the other common types are vascular (due to strokes), mixed (which can have both AD and vascular features in the brain) and Fronto-temporal dementia (in which the frontal and temporal lobes of the brain are affected causing early changes in social behavior, attention and activities, more than memory).
Dementia can also be associated with Parkinson’s disease, a known neurological condition.
Q: What causes AD?
Ans: A certain protein in the body gets deformed in structure and gets repeatedly deposited in the temporal lobes and hippocampus (the areas of the brain that controls memory and speech) leading to nerve damage and shrinking of the brain in size. The brain of a patient of AD will lose the normal number of folds and curvatures that a healthy brain has (that signifies its capacity). There are multiple theories of why this happens, most of which are still under research. Genetic influence, less use of the brain throughout the early years, less education, and decrease of a chemical called acetylcholine in certain parts of the brain with age are the most popular understandings.
Q: What are the symptoms of AD?
Ans: Commonly, there is slow forgetfulness for recent events, misplacing things, difficulty in calculating and naming common objects. Eventually difficulty in recalling date, day, names and recognizing familiar faces might happen. It progresses through mild, moderate and severe stages and with increase in the illness, speech and memory get increasingly affected with decline in activity levels. In moderate or severe stage, the person might need partial to complete assistance for leading life.
There might also be certain problems in behavior like suspecting others of stealing or intrusion, getting angry and stubborn, impulsivity, hearing voices, agitation or disturbances in sleep and wandering. Most of them can be controlled without medicines by minor modifications in our interaction or the environment. It is vital to understand the nature of the problem and discuss with your doctor how to intervene. Small doses of medicines might be necessary at times and do help. Over-medication is harmful as it causes drowsiness and falls.
Q: Is there any pre-dementia stage?
Ans: YES. It is when the process of nerve cell destruction has started in the brain. There might be an extra effort or difficulty to do the usual activities but none of them are hampered in any way. It is called Mild Cognitive Impairment (MCI). There are no medicines for this condition. But with regular schedule and continuing brain-related activities (discussed below), in certain individuals it can be reversed.
Q: Can medical illnesses lead to AD?
Ans: Well, they cannot cause AD directly. But diseases like Diabetes, Hypertension (high blood pressure), obesity and brain-strokes markedly increase the risk of AD (5-10 times). The more the conditions, the more the risk.
Q: Genetics is a risk factor. So, am I at risk if my parents have AD?
Ans: This is perhaps the commonest question we encounter in our daily practice. It is important we know about it, otherwise it causes a tension in the family members.
Yes, genes are one of the risk factors. But unlike disorders like thalassemia or hemophilia, where the son/daughter has 25 to 100 percent definite risk of inheriting the illness if their parents are affected; AD is not one to one related to whether parents have the illness or not.
A small amount of risk surely stays but let us put it this way: More than 97 percent of the cases of AD we see, they have healthy parents and almost 95 percent of those with AD, have healthy children.
There is no valid reason to panic if anyone in your family is suffering from AD. Genetic mutation tests are often done, but they are costly and often inconclusive. If any gene for AD comes positive, that causes added apprehension and anxiety as there is still no sure risk of the illness happening in his/her children. Thus, genetic tests are often bound with moral and ethical issues. It is best to decide on them after discussing duly with your treating doctor.
Q: If I suspect I am at risk, is there any measure or medicine to prevent it?
Ans: NO there isn’t! However, healthy lifestyle changes (discussed below), controlling your weight, blood sugars and blood-pressure, quitting tobacco and alcohol are always recommended, whether you are at risk or not. If you feel you have any issue with your memory after you cross 50-year mark, please consult the doctor at the earliest.
Q: Is treatment for AD available?
However, there is no reversal or cure of the condition. The progression of the illness can be slowed with a certain group of medications. If they help, they can be continued. The problems in behavior and brain-abilities can be better to some extent with medicines.
However, medications form a small role in treatment. Continuing to do all the possible activities as before (reading newspaper, listening to music), keeping brain active (by reading, writing, calculations), spending time with family and friends, having a daily schedule, getting good sleep and discussing old memories/photographs are important to preserve the brain. There are other forms of treatment like aromatherapy and pet-therapy that are still under research.
It is vital to respect the autonomy of people suffering from AD, validate their emotions and concerns and prevent them from any bodily or psychological harm. The medical conditions need to be adequately treated, especially pain, headache and constipation. They might not be able to express like us and so their needs are to be taken well care of. Any issues with vision, hearing or movement should be promptly corrected.
Q: Can AD be prevented?
Ans: There are multiple studies which have shown both positive and negative results. Definitely there are no medications for the same. However, in the early years and even in the pre-dementia stage (MCI, as mentioned earlier): keeping the brain ‘working and active’ delays further damage. It is called ‘use it or lose it’ hypothesis. Maintaining a healthy lifestyle (daily walk, exercise, positive self-esteem, Yoga), staying active mentally, positive socialization, good nutrition, solving word/numerical puzzles or online games, reading books and of course knowing multiple languages have shown to be of some protective value.
Even if the process of AD starts in the brain, continuing the above activities will still hep delay its course.
Q: Which online apps or games should be use?
Ans: There are plenty of apps and software developed for this purpose. Lumosity, Cognifit, etc. are few such. Many such tools are coming up every other day. Usability and feasibility are important. It is best to discuss with your treating doctor. Home-based simple measures like reading and recalling, solving crossword puzzles, drawing, cooking, etc. do help.
Q: Can people suffering from AD, have other mental illnesses?
Ans: YES. Just like others, they can have any other physical or mental illnesses. Depression is common and might not be easily detected. Recent changes in behavior, weight loss, decreased sleep, agitation, crying and food refusal can be early signs. Please visit your doctor/psychiatrist at the earliest if such problems are noticed.
Q: Will AD gradually progress?
Ans: Unfortunately, YES it does. The time to reach moderate or severe stages might be different for different people (5 to 15 years). In these stages, it might be difficult for them to manage self-care and perform basic things like eating, bathing, brushing or toilet chores. It is best that at every stage we prepare for it, discuss with the family and the treating doctor, trying to give the best possible care to the affected person. Any physical condition needs to be treated and food intake needs to be monitored. In more severe stages, the patient can be totally bed-bound. It is better to take help from a nurse/caregiver, trained in dementia care.
Q: Any suggestions for the caregivers of patients with dementia?
Ans: Hope and support are of utmost importance. It is vital but difficult to preserve them unconditionally: In our practice we learn more from the caregivers of our patients, than any book or article. They have their own innovative ways to deal with crisis which can be brain-stormed, also developing alternative social support systems are important. There are many online blogs and forums for discussing the care-giving issues (like http://www.dementiacarenotes.in), please do speak and share. Stress will be immense, and it is important to prevent ‘burn-out’, depression, anxiety and sleep-disturbances in the person providing care. Please try and get some leisure/ personal time for yourself. Seek help at the earliest for yourself, if you need to.
Certain things which are usually not discussed are legal and social issues. The dignity of the affected needs to be respected and the disability-related measures (pension/benefits) are to be discussed with the patient and doctor. People affected with AD might not be able to execute bank-related or other financial work (insurance, loans, etc). The transfer of these rights/powers if necessary are best discussed with a lawyer and the doctor together. Making and testifying will is another neglected issue which needs professional help. At every step, as much possible, keep the affected person involved in decision-making.
Alzheimer’s disease might not be cured but if managed properly, a meaningful difference can be made to the lives of the affected and their families. Understanding a problem enables us to deal with it. People affected with AD deserve the best quality of life just like any of us. Let us all pledge to join hands in doing so. We love to cherish our memories, don’t we; but at any point of time, there are 4.1 million Indians who cannot. Let us remember them, as long as we can.
** Disclaimer: The above discussion is primarily for the purpose of public-awareness and does not include the specifics of any treatment or management plan, long term dementia rehabilitation care and dementia-care homes and services. The readers are suggested to take professional help for the above.
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