Still Alice is a 2007 novel by Lisa Genova. The book is about a woman who suffers early-onset Alzheimer's disease. Alice Howland, a 50-year-old woman, is a cognitive psychology professor at Harvard and a world-renowned linguistics expert. She is married to an equally successful husband, and they have three grown children. The disease takes hold swiftly, and it changes Alice’s relationship with her family and the world. The film adaptation of Still Alice, starred Julianne Moore in an Academy Award-winning role as Alice Howland. There are over 2.6 million copies in print, and it has been translated into 37 languages. It was chosen as one of the thirty titles for World Book Night 2013.
Lisa Genova is an American neuroscientist and author. She has written fiction about characters dealing with neurological disorders. She received the Pell Center Prize for Story in the Public Square, an award "recognizing a contemporary storyteller whose work has had a significant impact on the public dialogue. The Alzheimer's Association awarded Genova the Rita Hayworth Award
The event is open to all. You can find out more here
The elderly are at greater risk for criminal acts. Fraility and the inability to put up a physical opposition to an attack is one of the reasons. Decreased attention to safety measures, and a tendency to trust indiscriminately may also be factor. Limited social interaction, which gives the attacker confidence that they will not be found out soon makes the elderly an attractive target. They are also at a risk from fraudsters who promise great investment deals or other financial scams.
Society needs to create support for the elderly so that they do not fall prey to such evil machinations in their golden years. Our living arrangements need to be neighbourhoods in the real meaning of the word - places where those who live near to each other are concerned about the well being of others who live in their locality. Society needs to be inclusive of the elderly who may no longer be able to participate in the same activities that they pursued during their 40s and 50s.
Often people tell me that such problems of the elderly are a western issue, since we have joint families in India. The truth is that even in India we have a large number of elderly who face a variety of issues on which they need help. Not every person has family members to help them maintain their quality of life in the latter years. Believing in the warm and fuzzy idea of loving and caring multi-generational Indian families, where all pains of the elderly are attended to, is like an ostrich hiding its head in the sand. Awareness must precede action. This article, "How safe are senior citizens in Ahmedabad" on crimes against the elderly in Ahmedabad is an eye opener for us all.
Read this in Gujarati
Dementia can strike anyone. When people are not aware about dementia, they are unable to recognise it when the symptoms appear. In order to increase awareness about dementia, I have made a small video in Gujarati and shared it on YouTube and WhatsApp. I hope that this brief introduction will encourage people to learn more about dementia. Please share the video and help spread the word.
After watching the video you can get more information in Gujarati from my book, "Chitadu Chorayu". I am attempting to provide as much information as possible through this website, and have also undertaken the task of creating detailed videos about dementia. An english version of this video is also in the works.
Management and planning are important parts of caregiving in dementia. In order to have a good quality of life, and plan and manage well, it is important to have an understanding of the underlying diseases. This is not really a "medical" understanding, but more an understanding of behaviour and cognitive changes.
Please do send me your comments on the video by email at email@example.com or use the contact form on the website.
I still remember with dread the time my father went to Mumbai. My father was a senior surgeon, who had worked in Britain, traveled across the globe and then settled in Patan, a small town 120 kms north of Ahmedabad in Gujarat. At the time that I speak of he already had Alzheimer’s it was just that we did not know it yet. His occasional slowness of thought and inability to grasp some concepts and often odd remarks were dismissed as the quirks of an elderly man. His brother’s wife, my aunt, was in hospital, and it was decided that he should go and visit her in Mumbai. My mother was not up to the travel so he went alone. He was driven to Ahmedabad by his driver who put him on the train to Mumbai, he was met by one of my cousins at the station.
On the return, I was traveling back from Mumbai to Vadodara on a flight that was leaving shortly after his, so we met at the airport, where he was brought by a cousin. We spent some time together, I was planning to ensure he boarded comfortably, then, as luck would have it, his flight was delayed by an hour, and mine was now leaving first. I still remember being worried, pointing out to him where his flight would leave from, where the announcement would be made, and repeating the instructions before boarding my flight.
Daddy got back to Ahmedabad and reached home fine. But it was years later, years after he was diagnosed with Alzheimer’s, a few years after he passed away, and only after I left my job and devoted time to learning about Alzheimer’s and dementia, that the enormity and the risk of the situation hit me. Anything, anything, could have happened. That could have been the last time I saw my father. He could have just wandered out of the airport, he could have disembarked from the train mid journey! If I had known, I would have taken measures, ensured he travelled with an attendant, but in the absence of diagnosis and a lack of understanding of the disease, we were unaware of the huge risk.
Awareness is the first line of action in the battle against dementia, and I am a foot soldier in that fight.
Wandering can happen at any stage in a person with dementia who is able to walk. Read more about it in the Help Sheet on Wandering
Early diagnosis helps those who have Alzheimer's disease and other related dementias. But there are many obstacles to getting to this diagnosis. From the family or person's reluctance to discuss it with the doctor, to the doctor's reluctance to diagnose. Some of this reluctance stems from the feeling that the diagnosis is like a sentence that confirms the disease, and a feeling that once a diagnosis is obtained nothing more can be done. This is a misconception. There are drug interventions, non-drug therapies, arrangements for emotional and practical support that would help maintain better quality of life as the disease progresses. Remember the disease will still be there, whether it is diagnosed or not. What will happen without a diagnosis is that proper planning for and management of the situation will not take place .
The myths and fears that delay or prevent people from consulting a doctor are discussed in this article. A survey indicates that many do not go to a doctor because a diagnosis would indicate their "life is over."
This irrational fear needs to be dealt with. We cannot put our heads in the sand like proverbial ostriches and wish the ongoing storm away. An early diagnosis that leads to knowledge and information will be a boon for managing the difficult times that dementia brings.
"Why did he get dementia?" After a diagnosis this is a common question asked and the possible reasons are discussed at length amongst the family with various causes being suggested. Is it because of his diabetes? Maybe because of his dietary habits? And the cruelest of all these, "it happened because he never bothered to exercise his brain." The reality is that in most cases where there is dementia due to Alzheimer's disease, Lewy bodies, or Frontotemporal dementia, there is no such cause that can be really pinpointed.
Instead of searching for a cause after getting a diagnosis, energies are better directed to understanding the situation and the prognosis, and planning for care and support. Trying to attribute a cause is more like assigning blame, and will not help the situation but only create feelings of guilt.
This line from the Association of Frontotemporal Degeneration sums it up: The three C’s: I didn’t cause it. I can’t change it; and I can’t control it.
After over a year of waiting, worrying and wringing of hands, finally, the registration of a non-profit company to address the issues of dementia in the elderly has come through. The company has been registered by the name Silversmile Elder Care Foundation.
The Foundation will take up its main objective of creating awareness and providing support for dementia in the elderly under the name "Varishta" which means senior, or elder person. In order to take the initiative further we need assistance of all kinds, from money, and advice to introductions and helping hands. Your assistance is invaluable. Please write to us at firstname.lastname@example.org for more information. If you wish to send a donation you can find details here.
Proposed Schedule of Activities
I was unable to get the company registered in any of the names that I would have liked, and at one desperate point I was willing to accept any name, just so that I could open shop (so to say) and start doing some good work. We went ahead with the name Silversmile Elder Care Foundation for the registration, which is a mouthful, so we finally decided to operate under 'Varishta' as an easy to remember, relevant name.
I must share that for a year I was merrily led up the garden path by a chartered accountant who had no concern for my objectives or my time, had little knowledge of correct process and requirements of the Registrar of Companies, and scant regard for ethics. I finally ditched him and got my registration done through another professional. I only wish I had taken things into my own hands earlier.
That is a thing of the past now, and I have my eyes set ahead on the next task, Wish me luck, and hope to see you join me on the way!
When a person with dementia needs to be hospitalised, things are very very complex. Hospitals, nursing departments are not geared towards managing the special needs of a person with dementia. Caregivers find that they have to reiterate special instructions to staff, and that there very little adjustment made to the different perceptions of reality that dementia brings.
The person with dementia may not be able to remember what they ate for lunch, or what the date is or describe their symptoms, yet medical professionals insist on collecting case history and symptoms from them, and giving them instructions. Caregivers and family members who have gone through this describe these incidents and the problems that they cause.
An article from The Guardian describes the care level for people with dementia in hospitals in England as ‘poor’ and discusses these issues. Persons with dementia may go without food, or remain in pain because they cannot communicate their needs. Staff may not understand the patients needs or changes in behaviour which indicated their needs or identify the presence of pain. Information was not shared between services, leading to the needs of the person not being met.
Medical and hospital services in India are still treating persons with dementia in the same fashion as they treat other patients. Other countries do have specialised medical and care services for people with dementia and their families. We have a long way to go to make these services dementia friendly.
Research has connected vitamin D deficiency in the elderly with an increased risk of dementia due to Alzheimer’s or other diseases. Vitamin D deficiency has also been associated with vascular dysfunction and brain atrophy. A Chilean experiment showed that providing Vitamin D supplements improved balance and mobility in elderly.
Though we still do not know the actual cause of diseases like Alzheimer’s that cause dementia, we should heed the results of such research. Vitamin D deficiencies can mostly be addressed easily.
Getting enough sunlight is important. A stroll outdoors can provide both exercise to boost your circulation and sunlight to give you Vitamin D. People who remain indoors due to disability, age or apathy may not be receiving enough sunlight. Asking a doctor to provide Vitamin D supplements may help in these conditions. So be sure you and your loved ones get the required dose of Vitamin D, through sunshine or a supplement.
Experimental Gerontology, Volume 41, Issue 8, August 2006
Daksha Bhat is interested in the management of ageing. As our society ages we need to create structures that will support the needs of the ageing population. We need to talk about the issues, understand them, and create the social environment that will lead to better services for the elderly. This website is a small attempt to be part of a bigger solution.