Faced with a request from a dear childhood friend that was impossible to turn down, I agreed to delve into some long forgotten painful memories to write something about dementia and Alzheimer's disease period. While there are countless websites available on the internet for anyone who wants to understand the basics of this horrible memory robbing disease, I will introduce some useful and well written resources later on. But before doing that, I believe it will be more relevant to pen downsome personal experience of seeing my mother succumb to this ailment almost 37 years ago. When I was around 17 or 18 years old some of my friends who would sometimes visit me, pointed out to me that my mother was behaving a bit strangely. I shrugged it off saying that she was too overworked in school and was thus quite preoccupied with teaching, grading etc. But such irregularities in her memories started to occur much too frequently which were beyond the realms of mere absent-mindedness... As was quite common in those days, my mother used to manage the household, cook as well as pack my tiffin box for school and college, and upon her return from a day’s work at her school would cook dinner for us. My father visited us during the weekends since it was too far to commute from Khurda or Jatni. The imperceptible changes in Ma started to loom larger with time. It was like an ever-lengthening shadow that would not shorten with the rise of a new day. Come dinner time she would call us to the table, and we would find that even though she told us she was making rice, dal and one vegetable or fish dish, we would find that she had only made the rice and half cooked dal. Baba and I would be visibly impatient and express our frustration. Such behavior of ours, we noticed would make her even more confused and distressed, and it was as if she was falling apart under the pressure of our trying to supervise what she was doing as we made her complete the cooking. It was as if she was striving through a thick fog to extract those memories such as the simple steps of preparing dal. She would look so guilty and sad and flustered and just terribly unhappy. My father and I would then take over the rest of the cooking. It did not help that there did not seem to be other friend’s parents going through the same problems. Or at least if they did, I did not know of it. And in my repertoire of English language vocabulary, there was of course no appearance yet of the word Dementia or Alzheimer’s disease!Then stories started to filter in from my mother's colleagues that in the middle of teaching a class to high school students, my mother would stop and get completely confused and be unable to continue with the lesson. Neither my father nor I could understand what was happening to her and started to get upset and impatient with her - over and over again. We found it difficult to accept that something was seriously wrong with her and kept hoping that one fine day it would all be fine. This is quite common in family members as we would come to know later and still happens with almost every family when faced with a similar situation. Added to our difficulty was that there was no awareness or information about the disease at that time, and nothing thus to prepare us for what was happening to mother. As time went by, he found himself in the role of a primary caregiver. The demeanor of this man who was well known for his quick temper and stern impatience, gradually changed to kindness and gentleness as he looked after her with the utmost care and affection and tried to decipher her quotidian needs. As she gradually lost her ability to perform her activities of daily living (ADL) such as bathing, grooming, feeding herself, and did less and less around the house, my father stepped in to take on these tasks upon himself to help her bathe and wear the sari, made sure she was clothed appropriately depending on the weather. To help feed her patiently while she would sit vacantly staring at her food. He would clean her up when in the later stages, before the accident – she became incontinent and I don’t’ have a single memory of ever seeing him grumble or complain or shout with impatience. When her walk gradually turned to a slow shuffle, he slowed his usual long and rapid strides to match hers and showed no resentment whatsoever when she would forget who he is. But there would come some profoundly insightful responses if we asked her who baba was and she would respond “he is someone who takes good care of me” I will try to summarize some of her symptoms into categories so that if there are any of you out there facing a similar situation, you can start to have a general understanding about this disease and what it does to the person. And if through this I can make a difference to even one of you then I would consider it worth my while. We would come to know much later that she had developed glaucoma and was suffering from severe pain from the high intraocular pressure inside her eyes. She was prescribed some eyedrops to reduce the tension. But her eyesightmust have already been affected and it was this vision loss that drew her eventually to the brightness of a candle during a power outage in our Cuttack home in the 8th or 9th year of her suffering from Alzheimer’s disease. My father was in the shower and when he came out, found her sari engulfed in cruel flames that she did not even have the judgement to take off. Her frail body sustained over 40% wounds that never healed. A month later after being brought to Delhi to be cared for at my brother and sister-in laws place, an ignorant surgeon carried out skin graft from her thighs to heal some of the deep burns on her hands - but neither did not wounds heal nor did the grafted area.You cannot treat or heal a person who has lost the conscious will… My mother passed away from her grievous burn injuries about a year later. I was away in Japan doing my Ph.D. at that time. For the next couple of years I completely shut off all memories of my childhood and youth in Orissa as it was inextricably linked with my mother. Eventually though I found myself involved with the Alzheimer Association in Kyoto in Japan where I volunteered with translating their website and monthly newsletters into English for an international audience. I became aware how important it was to increase awareness of this disease and the plight of caregivers. The role of the Alzheimer Association’s all over the world is to create awareness, to advocate for patients as well as their caregivers, improve the quality of lives of the patients as well as caregivers. And one of the umbrella organizations that serves this very purpose is Alzheimer’s disease International (ADI)headquartered in London. There are 100 member countries as of now of ADI and within each of these are several local chapters. For example the Alzheimer’s and Related Disorders Society of India (ARDSI) which was founded in the early 1990s has 23 chapters including one in Bhubaneswar.In time I would participate in several conferences of ADI (Alzheimer Disease International) held in various countries and in one of these in 1999 in Johannesburg in South Africa I would happen to meet my future husband. The most important thing to know is that not all symptoms of dementia are due to normal aging. Also dementia itself is not the disease but the general term to describe cognitive impairment serious enough to hinder activities of daily living. Benign forgetfulness arising out of Benign Senescence which is a gentler decline is quite different from any of the various forms of dementia listed below. However, forgetting people’s names and who authored Wuthering Heights, or for that matter losing one’s keys is due to gradual age related decline in memory without pathological significance. It’s the abnormal kind of forgetfulness that should be followed up by a medical evaluation. Abnormal forgetfulness can range from forgetting the way home while driving or walking, driving to work and then taking the bus back home because you can’t recall that you drove to work in the first place, forgetting that you had breakfast or lunch an hour ago and having a second one, not recognizing all of a sudden the function of a key (not just misplacing a key), forgetting the name of a spouse or loved one. The types of dementia are: TYPES OF DEMENTIA Alzheimer’s Dementia Alzheimer’s disease is the most common form of dementia, affecting 60-80% of dementia cases and is a progressive loss of brain function which affects memory, thinking, communications, behavior, perception, personality, cognitive skills, and ability to learn and carry out basic daily activities. The greatest risk factor is age and the vast majority of affected persons are over the age of 65 but about 5% of persons can get it in their 40s and 50s when it is called early-onset Alzheimer’s disease. While the symptoms may start with mild cognitive impairment, but over time persons with dementia lose the ability to take care of themselves and to carry out a conversation. They may lose their ability to eat and walk when motor functions are affected. These changes are attributed to changes in the brain which are due to the formation and accumulation of abnormal deposits of proteins called amyloid plaques and tangles made from tau protein. The brain cells lose their ability to function and communicate with one another and eventually die. The disease progress from mild to moderate to severe. The cause of the disease is as yet unknown but ample research points to a series of complex cascade effect of changes occurring in the brain over a period of time. Important: Alzheimer’s disease is not a normal part of aging. There is currently no cure, but a few federally approved symptomatic treatments are available. Some useful links about the progression of the disease are given below The warning signs of AD are: difficulty performing familiar tasks, problems with language, recent memory loss (abnormal memory loss e.g. forgetting the name of spouse or children, forgetting that one went to work by car and taking the train back home, forgetting to find the way back to the house), disorientation of time and place and poor or decreased judgment, changes in mood or behavior and personality. The neurons near the hippocampus get affected first which is why learning and short-term memory get affected. The Figure below from the website of the Alzheimer’s disease International (ADI) explains visually the 10 warning signs of dementia and is quoted for educational purposeshttps://www.alz.co.uk/info/early-symptoms Stages of AD: Mild AD, Moderate AD, and Severe AD. Each stage relates to which parts of the brain is affected as the disease spreads. MCI- Mild cognitive Impairment – memory changes in younger persons without being accompanied by changes in personality or other problems associated with AD https:// www.mayoclinic.org/diseases-conditions/ mild-cognitive-impairment/ symptoms-causes/ syc-20354578#:~:text =Mild%20cognitive%20impairment%20(MCI)%20is, than%20normal %20age%2Drelated %20changes. Lewy Body Dementia This form of dementia is often underdiagnosed since it resembles more common forms of dementia such as Alzheimer’s disease and Parkinson’s disease because of the motor symptoms like stiffness, shuffling walk, problem with balance and falls and lack of facial expression. LBD is accompanied by memory problems, confusion and other cognitive impairment that overlap with AD. There can also be visual hallucinations, excessive daytime drowsiness, and in about 50% of the cases is associated with a condition called rapid eye movement (REM) sleep disorder. In patients with LBD, there are abnormal deposits of a protein called alpha-synuclein which form into clumps inside certain areas of the brain that control memory and movement. LBD refers to both Parkinson’s disease dementia and dementia with Lewy bodies Vascular Dementia This is considered to be the second most common type of dementia after Alzheimer’s disease and can either develop soon after a single major stroke with disruption of blood supply to the brain, or can happen over time due to a series of infarcts or small strokes. This form of cognitive disorder is called vascular cognitive impairment (VCI), which includes mild deficits as well as dementia. [ For a detailed explanation of VCI please see this article:https: //www.dementia.org.au/ files/ helpsheets/ Helpsheet-DementiaQandA14-VascularCognitiveImpairment_english.pdf ] Symptoms are memory loss, confusion, difficulty in executive functions, communications and judgment, difficulty in speaking, restlessness and agitation, wandering at night, and reduced ability to carry out activities of daily living. The symptoms vary depending on which part of the brain has been affected by impaired blood flow and can be clear cut if they appear suddenly following a stroke. Vascular dementia is closely related to cardiovascular diseases and is potentially preventable by monitoring risk factors such as hypertension, high cholesterol, high blood sugar and smoking. Frontal Temporal Dementia This type of dementia primarily affects the frontal and temporal lobes of the brain which are the areas that are generally associated with language, behavior and personality. The onset in FTD is more rapid than in Alzheimer’s disease and initial symptoms involve change in personality, planning, social functioning and judgement. Persons with this disease may behave uncharacteristically and make rude personal remarks to strangers or may show excessive happiness and excitement. Mixed Dementia When Alzheimer’s and vascular cognitive impairment (VCI) coexist with all their respective hallmark pathologies, it gives rise to the condition of mixed dementia. The symptoms may follow a pattern similar to Alzheimer’s or vascular dementia or be a combination of both. Brain autopsies show that 45 percent of people with dementia have signs of both vascular dementia and AD HALLMARKS OF AD: CURRENT RESEARCH ON AD •Difference between dementia and AD In people living with dementia (referred to as “they or them” or PWD: Persons with Dementia), changes in behaviors are a common challenge to their caregivers and loved ones. Whatever the cause, challenging behaviors are often the most significant symptom of dementia and when it comes to managing behaviors, good non-pharmacological intervention is pivotal to successfully avoid unnecessary institutionalization and hospitalization due to drastic behavior changes. The use of non-pharmacological behavioral management should always be the first line of treatment and the use of pharmacological or medications to manage behaviors should be reserved for when non-pharmacological methods fail. The links below provide useful resources in understanding the different stages of the disease, as well as behavioral changes. https://www.alz.org/help-support/caregiving/stages-behaviors https://www.helpguide.org/articles/alzheimers-dementia-aging/alzheimers-behavior-management.htm Some examples of abnormal behavior are listed below. Wandering: : It is said that more than half of the persons with dementia will wander, and since they may be disoriented and not remember their name and address, it can be quite dangerous. Caregivers should allow wandering. As long as the wandering is safe it can actuallybe a good thing. Wandering is an opportunity for the person with dementia to get exercise, be occupied, decrease restlessness and may result in better sleep at night. Better sleep at night helps overall mental status and wellness in addition to giving the caregiver a better rest. Wandering can manifest itself in various ways and below are some examples how some caregivers have responded to it. a.Person with dementia wantto leave to “go home”: Reassure them, but do not try to contradict them. Here are some examples that offer insights on how to distract a person with dementia who is determined to wander. b.When the person with dementia want “to go to work” Repetitive behaviors:If they are not harming anyone, just allow them to repeat away! This can manifest itself as repeating statements, repeating activities, repeating harmful behaviors to self or others. In the latter case ensure safety by removing any harmful objects from vicinity. Agitation:This can manifest itself in behaviors such as paranoia and hallucinations, constant complaining, verbal aggression, clingy behavior (such as parent calls you 20 times daily and tells you that you have been abandoning him or her or feels agitated when you have to leave them for a short while), resistance to showers and hygiene Refusal to Take Medication:Refusing medication can be problematic and the solutions are a bit tricky. Sometimes it is not possible to make them take their medication, in which case, the number of medications needs to be decreased to the bare minimum. On occasion it is necessary to simply give no medications. a.Sometimes the refusal to take medications is caused by an inability to swallow, especially when someone has had a stroke or series of small strokes. They can’t always tell you that swallowing is a problem, because they can’t find the words to describe it. Also, overall behavioral symptoms can cause refusal to take medications Refusing food:There may come a stage in the progression of the disease when the person with dementia refuses to eat and may even spit out the food. Or even eat too much and often since they may forget that they have just eaten. https://www.webmd.com/alzheimers/not-eating-drinking-alzheimers#1 ENVIRONMENTAL INTERVENTIONS Follow a simple routine which is especially important for people who were quite structured in their lifestyles. Following a specific bedtime and doing the things each night in the same order – e.g. changing, brushing teeth, listening to soft music, getting into bed, dimming lights or reading/ looking at coffee table books (if the persons is a book lover). The routine should not be rigid but should be in the nature of a daily plan of what activity comes after what – hence if having the PWD assist you to lay the table is a part of the plan then they automatically may sense that it is followed by a meal and then cleaning up the table. Encourage activities that they took pleasure in the past
TYPES OF DEMENTIA
https://www.medbridgeeducation.com/blog/2019/ 08/ polypharmacy -why -medication -reconciliation -matters -to -nonprescribing-healthcare-providers/
She grew up in Cuttack, Orissa and did her schooling at St. Joseph's Girls High School and later studied in Ravenshaw College and Delhi University. She lived in Japan for her advanced studies and work for 13 years.
She has a PhD in Japanese studies from Graduate Univ for Advanced Studies in Kyoto.
Worked as medical writer for Eisai Pharmaceutical Company and with a medical communications company in Tokyo.
Represented the Japanese Alzheimer Association at the ADI (Alzheimer Disease International Conference) for several years as well as volunteered at a local long term care nursing home in Kyoto for many years.
She has an MPhil in Chemistry and Advanced Diploma in Japanese language from Delhi University.
Currently, she is a freelance professional Japanese translator/interpreter in the US.