Confused, disoriented elders who wander: what can be done, and a video with tips.

A few days ago I heard of an incident that had an unfortunate hum of similarity with many such incidents one hears of: an elder was found dead in a lake near his home; he had probably slipped in, but no one really knew. I was told, “He had been wandering for months. What could they do!” The way of speaking implied that such tragedies are inevitable once someone begins wandering.

We’ve all heard stories of some seniors who start getting confused and disoriented as they grow older, of their wandering off looking for homes demolished decades ago, looking for people and places that no longer exist, wanting to do things like go to office when they have retired years ago. We’ve heard of such wanderers being found after a few days, injured, starved, clothes tattered, with no one knowing what happened in the interim.

We’ve heard of families still waiting for the wanderer to return.

And that occasional sentence, What could the family do! uttered as a statement of hopelessness, and not as a request for suggestions.

Yet, while the tendency to wander may happen, wandering and tragic consequences are not inevitable. There are things that can be done.There are ways to reduce the chances of such wandering, and there are ways to improve the chances of finding a person if he/ she wanders. These are not fail-safe ways, they may not always work, but a reduced probability is worth it, no?

The problem of wandering is so common that I find it strange that we don’t have a more vigorous discussion on tips and tricks for it. Somehow, I suspect that till someone close to us wanders, we assume wandering only affects others; we don’t think it could happen close enough to hurt us. Perhaps the problem doesn’t seem immediate enough to engage us. But the problem of wandering is best tackled by reducing the chance of someone wandering, by ensuring they always carry an identity, and by having quick ways to locate people who wander.

And here’s the thing: we cannot prevent wandering if we only read tips about it after people wander. Tips must be available widely so that when an elder acts confused and seems prone to wander, family members don’t shrug helplessly, saying “What can we do if she wanders!” in a way that shows defeat. Instead, they genuinely ask around, “What can we do if she wanders?” because they know they can get suggestions and solutions.

When my mother started getting confused and disoriented enough to start wandering, I had a tough time. I tried explaining to her that she should not wander; it failed, because she did not see herself as wandering. She was trying to see who has rung the doorbell or walked past in the corridor. She had stepped out for some work, except that she forgot what it was. I would dash out to catch her before she hurt herself (she had balance problems) or got lost, and every time she would get angry at me for stopping her from what she wanted to do. (Looking back, I could have found better ways to distract or persuade her). I tried to make her carry a tag; she got angry again. Once, I asked a neighbor to sit with my mother for around ten minutes as I caught up with an outside errand; I returned to find the neighbor had left my mother alone because “Auntie promised me she would not wander.” My mother, meanwhile, had wandered.

So I started making sure she was never alone at home, and I would lock the door from inside. My mother complained to some friends who then scolded me for mistreating her. “I would not like to be locked in,” one elderly man said. “My children would not dare to do this to us.” This was after my mother’s diagnosis and I explained that she got confused, she had a balance problem, even a small accident could cause a fracture, or she could get lost. He assumed I was some control freak out to trouble my mother (too many TV serials with bad children?) One neighbor even egged my mother to sabotage my efforts and demonstrate her “independence” by walking out, so much so that my mother would sit on the sofa waiting for the moment that the door was unlocked so that she could dash out of the “jail.”

BUT: No one suggested anything I could do to reduce the wandering :(

The funny (sad?) part is, all these persons who were critical of my (unskilled) attempts to keep her safe, all of them had known of some wandering episode of someone or the other. They knew some people wandered; they just didn’t think my mother was the “sort who wandered” even though she wandered. Because, “Auntie seems fine” or “Auntie used to help my daughter in her studies” or some such thing.

We definitely need more recognition of the fact that people who seem normal in short interactions may also wander.

And we need to get cracking on sharing tips so that when seniors start showing some confusion, some disorientation, families know of these ideas and can implement what is suitable, so as to reduce the chance of an actual wandering episode or tragedy.

An example: A few years ago, a lady wandered because of a door left unguarded for a few minutes, but the family had stitched a label with the name and phone number at the back of her nightgown, and a passerby called within minutes that he had spotted a lady wandering; she was brought back safely. One small action, one small tip, and look how it averted a tragedy! When I heard of this incident, I remembered my futile attempts to make my mother pin an identity to her pocket and her angry protests; I had not thought of stitching a label at the back of her nightgown, at some place she would not notice it.

Yes, we need these tips pooled and talked about.

Two months ago, prompted by my concern about wandering, I had prepared a video with tips on wandering, and also written a rambling blog entry about my concern for wandering here: Diverse responses, networks of concern and support, problems like dementia and wandering. Recently, I created the Hindi version of the wandering video to make the tips and suggestions accessible to a wider audience. I created the video as part of my work on dementia, but the tips would apply to any confused/ disoriented person

This, friends, is my way of adding to the pool. But information can reach families that could benefit from it only if people spread the word. It may seem like a small thing not worth doing–why bother, let others share the link–but perhaps one person you tell, one tip they employ might prevent a tragedy. Or they may get inspired and think of some more tips and share them around. It could begin a conversation, the sharing of a concern that would avert tragedies. And frankly, none of us is immune from such tragedies…

The Hindi wandering video is here: (If the player does not load, you can click here to see it on youtube).

The English wandering video is here: (If the player does not load, you can click here to see it on youtube)

And if you don’t really believe that wandering is a real problem that it hits people unawares and can lead to tragic consequences, have a look at this presentation by Sailesh Misra of Silver Innings which includes real life examples (identities changed) of wandering episodes in India: Wandering and Missing Senior Citizens: Why does this happen and what to do then

And if persons do wander and get lost, here is another link from Sailesh you may find useful: Blog for missing senior citizens.

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Hindi website for dementia caregivers in India (40+ pages): an announcement

This blog entry is to share that I have created a 40+ page Hindi website for caregivers of dementia patients in India. Below, I explain the scope and purpose of the site and put forth my request to all blog readers.

The website:

The site is at http://dementiahindi.com. Topics covered include dementia, caregiving for persons with dementia, related resources available, videos, interviews, and contact information. Everything on the site addresses the caregiver, keeping in mind what a dementia caregiver (as per my understanding) may need to know, or what may help a caregiver. The cultural context is India, and so the examples and the assumptions of system/ social support are based on what is found in India.

The material is written in conversational, normal Hindi (Sanskritized words have been avoided). There are pictures and cartoons, with blurbs in Hindi. As most available online material is in English, many of the referred links to go English sites, but I have also given links to all online Hindi material on dementia/ care that I am aware of (which is pathetically low, and therefore I created this site). The material is a loose (not exact) translation of the English site, Dementia Care Notes, and has a more Indian idiomatic flavour which is possible because it is in Hindi.

The purpose:

As I am not aware of any extensive Hindi site on such a topic, my attempt in creating this site is to break out of the chicken-egg situation of demand-supply related to Hindi sites. People don’t create sites because no one visits them, and people do not look for them because there are none…that is the sort of problem I have tried to step out of.

The http://dementiahindi.com site is created:

  • For people who prefer to read in Hindi
  • For people who prefer English but need to show family members stuff written in Hindi (they can print the pages/ show them online)
  • For volunteers who are too busy to/ unable to support caregivers who need support in Hindi (they can pass the link/ print the pages)
  • For volunteers who want to prepare material in Hindi (they can contact me so that we can work out how they can use this material as input)
  • For myself, as a starting point for more work I may do in Hindi (like preparing videos)
  • To provide an online presence in Hindi that may make a Hindi-speaking caregiver approach me for help, – with the confidence that they can talk to me in Hindi
  • For the curious who may surf by and read the site/ use it to reach other online material available in Hindi

Future Plans:

These are not ambitious, and consist of:

  • In an on-going way, responding to anyone who contacts me through this site
  • Accepting and processing any suggestions/ corrections based on my time and energy levels
  • Updating the site for more Hindi material I may prepare (prepared as per my time and energy levels)
  • Updating the site to provide links to other material in Hindi that may be available or accessible

My Request to You:

Please spread the word about this site.

I sometimes get emails asking me, “Can I pass on this link to someone I know?” and I’d like to state it clearly that the very purpose of creating such a site is that it should reach people who may be helped by it, so please, please spread the word; you do not need to ask me to pass the link around. There are many people in India who are not all that comfortable with English (though they may not say so), and would prefer material in Hindi if they could get it. Please share this link also with people who may get helped, with people who may know people who may get helped, with people who may know people who may know people who need help…you get the picture.

Social media shares are good. But social media shares last just till the next bunch of tweets and status updates fill up a couple of scroll-downs, so please also consider adding the link to your blog/ site if you think it could help, if you think it fits…

As far as I know, there are no established conventions for how people locate Hindi material on the web. Different people use different ways, and most assume there will be no material. Searches don’t work that well, most people do not use Hindi transliteration on their computers, the Hindi aggregator sites (that were supposed to collate information on Hindi websites) keep going defunct.

So the only way I know to spread the word is “word of mouth” or “word of mouse”. Have a look at the site, and if you think it suitable, please spread the word.

Please help me by giving me any more information you have on online Hindi material on dementia care. I will check it out, and include it as suitable.

Please help me out through feedback on the site, especially any awkward sentences you note, any place where the language is not conversational enough, or there are spelling mistakes. And, of course, other suggestions. I am not an expert, and I have done this alone, and I would appreciate your input.

At the end:

There is, of course, stuff I’d love to share about how I got into this, why, and how I finally got over my diffidence and took the steps needed to create this site, but they are probably worth an entry of their own and that can wait.

For now, let me just end this post by reiterating: The website http://dementiahindi.com is now a complete unit, with 40+ pages, aiming at helping caregivers of dementia patients in India. It is before you. Please consider the site announced. If you have the time and energy, please have a look.

If you see any mistakes, or if you have any suggestions, please, please let me know. The beauty of online work is that it can be changed, improved. Email me at cyber.swapnakishore@gmail.com or use the website’s contact page. I did this alone, but now it is out there, and I am not alone. I welcome comments.

If you think the site could help someone, please help spread the word. Mention it wherever you see fit–social media (Facebook, twitter, whatever), your blog or site. If you think it can help anyone, please use “word of mouth”, “word of mouse”, whatever.

Thank you.

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Trained attendants and respite care for dementia: Observations from India

I keep getting queries because of my site Dementia Care Notes, and the most frequently asked questions by my site visitors are related to getting trained attendants for dementia home care, or getting information on old age homes where dementia patients can be admitted.

My website already contains information on these, but I think people want to hope, and when they are desperate, they want a personal and direct answer. Much of my correspondence time goes in personalized replies to such queries, but I thought I’d put together a sort of summary answer here, anyway.

First, old age homes for dementia patients.

statistics for dementia facilities in India

As per the Dementia India Report 2010, there are an estimated 37 lakh (3.7 million) dementia patients in India and 6 respite care facilities (facilities for fulltime stay, short term or long term) that are specialized for dementia patients. I’ve summarized some data alongside, and you can see the contact information for all six at my website’s resource page here: Dementia Caregiver Resources across India. Add to it the day care facilities, the optimistic estimate of capacity oriented for care suitable for dementia patients is 400.

Four hundred, across India, a nation where the number of estimated patients is 3.7 million.

A massive gap, indeed.

Below are some observations I have to add on this topic–these are, of course, my observations, not an authoritative report, but they are based on multiple data points, and I welcome comments that may improve this understanding.

Read the full post here

Diverse responses, networks of concern and support, problems like dementia and wandering

Thought I’d use this post to ramble about some things I’ve observed related to wandering adults and to share my thoughts on how diverse the responses and actions of people are, and how many of these responses together can form a network of support…. and my own response, of course :)

What does one do when one hears of an elder who has gone missing, most probably because of the confusion caused by dementia? At what threshold does concern become significant enough to act, and how do different people respond?

I’m not talking of people who begin criticizing the family for neglect, because that is not “help.” I’m not talking of persons who claim it is “karma” and something the family is destined to bear, and therefore don’t think of helping.

I’m talking of persons who are concerned.

I’m talking of all those persons who pause, feel that twinge in their heart, that sense of “ouch” when they hear of an elder who has gone missing. Persons who feel the family’s pain, and worry about the elder’s bewilderment and wellbeing. Maybe they feel this way because they have experienced wandering episodes with a parent or another relative or friend or the parent of a friend or neighbor, and can connect with the fear and agony. Or because they are anyway able to empathize and can imagine the horror of the situation. Or perhaps they are volunteers and committed to the cause of supporting elders and patients and all that. What do these persons do when they hear such news?

Most people would pause to read it, feel bad. Some would look carefully at the photograph, but I’m not sure how many would note down (and put in their wallet or handbag) the phone number to be called in case they spot the missing person, and I don’t know how many would remember the name of the person, or the particulars. Maybe if the elder has gone missing in the same city, they will be more alert, more ready to act.

Read the full post here

Adventures in Hindi Part 2: The failed experiment of Have-English-can-translate-to-Hindi

Continuing my narration of my office-chair adventures related to Hindi. This is the second post of a four-post entry (see part 1 here); I’ll use today’s post to describe my (since aborted) forays into translation. It took me a few months to step past that (what I now think of as) translation trap.

My initial thinking was simple and clean. Here’s what I thought: I have a fairly exhaustive dementia care website in English. I know Hindi. Let me translate it myself. How difficult could that be? Or if it takes too much time (or, er, is difficult), I can get the translation done professionally. It is just (so I thought) a matter of being willing to spend either time or money—and people do say there is an equation whereby time is money :)

I usually tackle any challenge in a two-pronged way: buy books, and start Googling. This was no different.

Within a week of my initial doodle recognizing this new self-imposed project, I had cleared out shelf-space, bought a Hindi grammar book, bought English-Hindi and Hindi-English dictionaries, bought a bunch of Hindi magazines and other health books. I had also located the Google transliteration facility and translation facility, installed the Indian language pack of my Microsoft Word (I hadn’t even noticed it had come bundled with the software). And I had even found a bunch of good online dictionaries for Hindi and Urdu.

It took some playing around to understand the basics of the transliteration package, and how it did not always work, and how to use the on-screen keyboard instead. It was interesting, for example, to see how the transliteration was not always the way Youtube songs are transliterated. “Ki” became कि, and not की (for which I needed to type “kee” ) And also, one can “train the transliteration software”; I trained mine to transliterate “dimenshia” to write out डिमेंशिया and reached a point where डिमेंशियाwould pop up as a choice even if I had just typed “dime”, which is a sort of tip-of-the-fingers way of speed-typing in a fairly different way.

Time to actually translate stuff, eh?

I knew, of course, that “Hindi” has many shades and versions. I remember the time it had taken me to orient from my Delhi Hindi to the Mumbai (then Bombay) “Hindi” and I even remember how years of living in Patna as a child had made my Hindi acquire the Bihari style (the effect took some months of Lucknow Hindi to go). Luckily, of course, we have Bollywood which gives us a range of Pakeezah to Munnabhai to educate us on diversity.

I did not realize how much that diversity would impact my attempts to translate. After all, people do translate stuff….

I surfed to locate bilingual sites, Hindi health-related documents, or sites created in Hindi. Not much choice existed. Many websites used impressive words that reminded me of news bulletins and Hindi exams. But if my intention was to retain the reader’s attention as well as communicate, I wondered how I could balance “brevity” and “purity” against “normal everyday Hindi”, whatever that was.

To begin with, I got stuck with the word “caregiver”.

Read the full post here

Online caregiver communities: supporting each other

I used to feel lonely as a caregiver till I discovered that there are enough of us, and that there are communities–and even more important: we caregivers can form our own communities. Unfortunately though, caregivers don’t get together often enough, because caregiving is often hidden behind the scenes, even for serious and long-drawn illnesses.

In India, where looking after family members (whether a child or a spouse or a parent) is part of the expected duty, family members typically do not share their problems with “outsiders”, scared that they will be seen as unloving or as persons shirking their duty if they let even a bit of fatigue show. I think silence about caregiving actually worsens the quality of the care we can give our loved ones, because information, tips, and ideas do not get pooled, and care given by a family is restricted to what they can figure out by themselves (possibly in their overwhelmed state). In effect every family is forced to reinvent the wheel.

Contrast this to roles that are talked about openly– like “normal” child-rearing (not bringing up children with special needs, which remains in the shadows). For normal child-rearing, experience pools are easily available and can be accessed without shame.

We need communities and sharing for caregivers, too. Communities where we are able to talk about situations, and hear from others whether they’ve faced similar situations, what could have caused it, what worked, what didn’t work.

Of course, given that caregivers remain invisible, it becomes even more challenging to collect enough caregivers to form a community, and then make members speak up and share :)

In the “Western” countries as we call them, support groups are relatively common. Caregiving is openly acknowledged as a role, and society accepts that caregivers need support. Such support is partly given by support groups that meet periodically to discuss topics and situations of mutual interest, get expert opinions, and relevant training.

In India, people assume that a “joint family system” provides all necessary support, and feel that outside help is not needed. Some even assume that if a caregiver needs help from outside the family, it indicates the decline of the joint family system, of culture, and all that. The mechanism of supporting caregivers is associated in part with a sense of inadequacy and “bad family” and shame for society as such; if our families were “good”, we would not need support from “outsiders”.

But taking care of a patient using unproven “instinct” is not the same as being an “informed” caregiver who understands the situation and challenges and uses suitable mechanisms and skills to help the patient.

Caregiver communities collectively enable caregivers to become better and more informed caregivers.

Given how difficult it is for caregivers to locate each other and coordinate meetings, in-person communities are difficult to form and sustain. Many caregiver groups that are started with the best of intentions start tapering off unless some volunteer/ caregiver makes it his or her life-mission to constantly induct new caregivers.

Because, you see, a caregiver community is an ever-changing community.

Read the full post here

Been working on dementia care site

I’ve not blogged for a while, mainly as I decided to put in a burst of work on my site, based on the surveys I did earlier. The March survey had shown trained attendants as a major concern area, and I tackled this first, gathering information from multiple sources. I was looking for areas of concern, which I collated across meetings with caregivers, questions asked in support groups, even an e-group that I co-facilitated, in addition to a survey I conducted for getting more input (as mentioned in my last blog entry).

One upshoot of all that energy is that the Dementia Care Notes website now includes a detailed page on what to expect from attendants in dementia home care, how to adjust to them, how to orient them, and supervise them, and ensure safety and security, etc. The page is here: Using Trained Attendants for Dementia Home Care The page also links to a document that can be used as a starting point while orienting an attendant for your patient’s needs. The document is downloadable at this link: Orienting attendants for dementia home care.

I’ve also added other pages on some other important topics, like Special tips for challenging behaviours: wandering, incontinence, repetitions, sundowning and Long-Distance Caregiving for Dementia Patients in India

As I worked on these pages, I found myself coming up with a lot of ideas that merited blog entries. My experiences, my interactions with other caregivers, my realizations (during social gatherings and even medical trips) of how people outside my immediate circles seem as unaware of dementia now as they were three years ago. My comments on movies that depict dementia. Other stuff like that. I’ve jotted them down. I am hoping to make more frequent blog entries now, maybe even once a week, but I’m a bit wary of committing to that.

Time, now, for a break for a few days and then I hope to fall in a regular cycle of blogging…Let’s see…

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For Those New to Caregiving

A few days ago, a friend asked me to jot down thoughts I’d like to share with a newbie caregiver–someone thrust into caregiving that could be intense or extended, but was not restricted to caregiving for a dementia patient.

Here it is; if it seems useful to you, share the link with others. And I’d love to receive comments …(ETA: For a  PDF download version, click here.)

Tips For Those New to Caregiving

By Swapna Kishore

Fifteen years ago, my father collapsed while getting up from a chair. A few hours later, instead of editing a document I had to submit to a client, I was trying to figure out how to look after someone bed-ridden thanks to a hip fracture. I assumed then that the situation was temporary, but as days, weeks, and months went by, my life kept changing to accommodate caregiving–first for my father, who never quite recovered, and then for my mother, who has dementia.

My caregiving journey is dotted with successes and failures, days of fulfillment and days of frustration. I’ve been sharing my experiences through my blog and website, and in support group meetings.  Some days ago, a friend asked me to jot down suggestions for people newly thrust into the role of caregiving. Here is what I think…

Most of us have very little idea of the intensity involved in extended caregiving. We may have looked after someone with a fever, or spent a week or so supporting someone recovering from a surgery, but that is quite different from caring for a person suffering from a serious or disabling condition such as late-stage cancer, cerebral palsy, dementia, or organ failure. We may not have imagined ourselves (given our gender/ qualification/ skills/ good luck) as persons who may need to provide such care.
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Bioethics and dementia

Just saw this site, Nuffield  Council on Bioethics, and read about their work on dementia here. Then I followed the link on the page, and downloaded the reports.

I have only one word. Wow!

Sometimes, someone catches every thought you have or could have had.

Every section, every point, every sentence resonated. I wish  could make this compulsory reading for…oh, well, everyone, because dementia and caregiving is something that affects everyone. Anyone can get dementia, anyone can be thrust in the role of a caregiver. And even if not, there are people around you who are patients or caregivers, and they deserve a life, too. What I loved about these reports is that they address a wide range of impacts. They don’t just talk about the patients’ right, they acknowledge the carer, and they acknowledge the role of society in it all, even that of shops and restaurants a patient may visit (or should be able to).

Dignity. Ethics. The right to life fully, despite the condition. The dilemmas and difficulties. The carer’s own life, and the balancing act. How every case is different. How difficult it is. How it hurts. What can help. It’s all there.

I thought I would place a summary here, but I can’t do justice with a summary, so go ahead to the download page and have a look yourself….

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when every one is an expert

Looking back at the years of caregiving, one stressor I remember is the unsolicited ‘advice’ (often more like admonitions) I kept getting from strangers and distant acquaintances. Everyone took it upon themselves to tell me what to do, how I could be a better daughter, why I was not good enough, what my ‘duties’ were, what my mother wanted and enjoyed and needed (often, these were people who barely knew me or my mother). It overwhelmed and frustrated. I felt defensive at times, intruded upon at other times. I did not know how to process this abundant flow of input.

Here are the criteria I evolved to handle this unsolicited flow from people I had not asked for help, and who barely knew me:

  • Are the advisers experts in the area they are advising on (medical professionals, experts in caregiving, in nutrition, exercise, rehabilitation)
  • If they are not experts, do they even know what my mother suffers from, or the full list of what I am doing and why?
  • If they are not experts, do they have a stake in my mother’s welfare, and would they be willing to help implement what they are suggesting?
  • If they are not experts, and if I fall ill thanks to the workload they are proposing, will they take over caring for my mother in the meanwhile, or look after me when I fall ill?
  • If they are not experts, have they experienced a parallel situation, and did they do themselves what they are proposing I should do, and did they remain sane while doing it?

If the person advising was not an expert, not someone who understood my mother’s exact problem , not a stakeholder or a volunteer, and not someone who had experienced and gracefully handled a similar situation, I took the input quite warily. I listened politely; if it needed checking out with an expert, I did so, otherwise, I set it aside. Handling advice became  amazingly simple after I set these criteria :-)

The inflow of advice is near absent now.  I can see the discomfort of would-be advisers if I describe my mother’s condition. Looking back now, I suspect a lot of advice I got earlier was not about my mother – it was a statement of how the persons advising me wished to be treated if they were in place of my mother (as they understood it). Perhaps many of those authoritative statements were seeds they sowed in the ether that connects all beings, in hope that their children would behave that way when the occasion arose. And now, when it is too painful to picture themselves so helpless, they have no advice for me, only avoidance.

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stages of dementia

The progression of dementia is often understood and explained using ‘stage of dementia’.

Often, in its early stages, dementia is so much like normal aging that it is indistinguishable and often under-diagnosed. As dementia progresses, the differences between dementia and normal aging start becoming prominent. Often, at least in India, it remains under-diagnosed, and families just assume the elder is being stubborn and troublesome (which is why we need more dementia awareness programs). Then, as the situation worsens, families start realizing that this particular elder needs something different, something special. Doctors are consulted, diagnoses obtained, and treatment started as appropriate. Behavior at this point often includes stuff that harms the patient or others around him/ her, and gets tricky to handle. Often, even at this stage, non-pharmacological approaches are not considered, and it is assumed that only medicines can be used to manage challenging behavior.Then, dementia progresses to a point where the dependence is obvious, the disease is obvious, and the patient needs full-time caregiving.

The stages of dementia are often defined in terms of the decline in the functional abilities of the patient. A description of the seven stages can be seen here and here.

Essentially, the stages are:
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blogs on dementia and caregiving

This is going to be a busy day, so just a small note to say that I am thinking of putting up a page on blogs on dementia and caregiving.

I have noticed there are a lot of excellent blogs that share a whole bunch of useful and interesting stuff. Yesterday, going through their entries, I suddenly wondered how my life would have been different if I had found these blogs earlier.

I was very impressed, for example, by Alzheimer’s Reading Room

If any of you have any leads to pass on, please do so as comments here, or by e-mailing to me.

Knowing what dementia is, versus understanding what it really means

A few weeks ago, as I was working on how to increase awareness about dementia, I realized that most people who know about dementia don’t really know about it. They can talk about how unfortunate memory loss is, and how awful it must be, but the sentences are more like quotes from articles they have read, or what they have heard. Because, a few minutes later, they slip into behavior that can be extremely stressful for the patient, or come up with suggestions that leave the caregiver scratching his/ her head, wondering how to explain it all over again.

Memory loss is one of those overused phrases. We joke about it all the time. Misplaced the car keys? Joke: You are getting senile. Joke: Maybe you have dementia. Senior moment. Whatever. Forgot a birthday? hey, you’re getting old. Grin.

So when someone says, dementia is memory loss, we assume it to be more of the same. Maybe losing five car keys? Forgetting ten birthdays? It is bad, inconvenient, but not heart-wrenching. And just as we don’t make too many concessions for someone because they misplaced their spectacles or car keys or forgot which day of the week it is, we expect a dementia patient to, more or less, be normal (except that she has misplaced her keys, poor dear, smile).

For years after my mother was diagnosed, I made this same mistake. I made allowances for memory loss, but didn’t quite understand (or try to) how memory loss could so totally affect behavior.
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HBO’s Alzheimer’s Project

I’ve been busy, not enough time to write a detailed post on a few topics I want to, but then I saw this set of video streams, and it was worth writing about: HBO’s Alzheimer Project. Have a look here.

If you want to see what dementia means to the patient, and to  caregivers, this is an absolute must. The project includes a set of videos (which will be available for sale later), and guides that go along, and supplementary material. There is also a lot of data that makes the impact really sink in. Did you know, for example, that 54% of the people in America have been touched by Alzheimer’s, as patients, relatives, friends, whatever.  The national impact of Alzheimer’s (for USA) is discussed.

One of the dementia patients interviewed (Joe Potocny) has been using a blog to record his thoughts as he progresses through the disease. He also twitters.

It was while going through these video streams and other material that I realized how different it is in India, where diagnosis usually happens (if at all) in middle to late stages.

I, for one, have not met a patient diagnosed at a very early stage, who understands he/ she has dementia but is still almost fully alert/ functional, and is therefore planning for and dreading the future. I have not seen a family where the patient explains to his/ her grandchildren what will happen to him/ her because of the disease in a few years. I do not know patients who have grasped the impact of the disease in time to say their farewells the way they may want to.

If ever I get dementia, I would like to know in time to enter the state with grace and after having said my farewells and given my hugs to all I care for, after neatly setting aside my life as memory forces me to.  Even if the disease is non-treatable, surely there can be dignity in the way one embarks on this downward slide, dignity while it lasts.

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Where is Mother, or, when a dementia patient walks out

One of the scariest consequences of dementia is that patients tend to wander off.

Imagine a lady with dementia sitting at home and suddenly thinking it is time to go to office (never mind she retired twenty years ago); she picks up a purse on the table (it isn’t even hers) and heads for the door. The surroundings seem familiar for a while, but then she is confused. Now she is in a strange place, agitated, not very sure who she is or what she is doing as her original reason for leaving the house has been forgotten. Meanwhile, frantic family members are trying to figure out where Amma has gone.

Or a restless, reasonably active person walking around in the house, and spotting a door. Out of habit, or curiosity, or boredom, the dementia patient turns the knob. Nice weather, good breeze. Another step and the person is out of the house, and no one else knows. After walking a block or two, the dementia patient realizes that he/ she is lost. Agitation, confusion, fear set in. He/ she wants to return home, but is not sure of the address, or may he/ she remembers ‘home’ from a different city, a different age.
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