Dementia Home Care in India: a framework to understand it, and suggestions for caregivers and volunteers

As an ex-caregiver who tries to help other caregivers, I continue to be dismayed by how unprepared and unsupported families are through years of exhausting and heart-breaking dementia caregiving. Many families never get a diagnosis. Even those who get a diagnosis rarely get a realistic picture of how much they need to plan, what changes they will have to make in their lives, and how absent systemic support systems are.

Again and again, I find families clueless about the deterioration dementia brings. They do not know that dementia will keep worsening and that the person will become almost fully dependent. They have not registered that they will be using more and more of their time and money and energy for care. They often think dementia as memory problems; they do not know the person’s abilities will keep reducing. This will go on for years, and during this they will see the person deteriorate in heart-breaking ways. They start this journey unprepared, with no one holding their hands.

Almost all dementia care in India happens at home. Advice given to caregivers assumes many things about what families can afford and the time they have for caregiving. Families do not get a realistic picture for effective planning. They remain unaware of many potential problems. Possibly the advisers themselves do not understand the overwhelming and prolonged nature of care. And advisers do not appreciate that 24×7 home care differs from a day job of a trained professional who is part of a multi-disciplinary team. So a lot of their well-meaning advice is impractical because, though good in itself, the advice does not fit the family’s care context.

The fact is, dementia awareness and support in India is so poor that family caregivers have to create their own group of supporters. They have to plan for dementia caregiving and also for self-care. They have to plan finances for a marathon stretch of increased costs and reduced incomes. They have to see how to take out the required time and energy for years of care. They have to prepare for the emotional journey of caring and their stress and fatigue. They have to appreciate the limitations of the systems and support around them, and have realistic expectations. And all such planning has to be done early, because they will not be able to do much planning once they are submerged in intense caregiving.

Home care for someone with dementia is not a simple short-duration activity. Care happens for several years, and in the context of the culture and society and the family’s other obligations and desires. Many long-term decisions are made. We need to view dementia home care as part of this framework in order to understand and plan it better. We have to appreciate the limitations and then seek practical answers.

I have been mulling over this for a while now, and recently I put together my thoughts on such a framework along with some suggestions for caregivers and volunteers. Alas, there are far too many problems, and very few solutions or suggestions. I am not sure how much my presentation will help viewers, but it will surely give them something to think about. Maybe it will prompt families to derive practical approaches for their care situations. Maybe volunteers will find better ways to support families. You can view the presentation below, or view the presentation directly at Slideshare if the player below does not load properly.

Also, some similar posts and pages, and some resources:

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On work, identity, social interactions, and “moving on”: another personal update

Some days ago, I was asked a question by a well-meaning acquaintance, who was probably not looking for a detailed answer: So, have you resumed your work now? I didn’t really know what to say, but I think I mumbled something that satisfied the conversational need, and we moved on to other topics.

This is not the first instance (nor will it be the last) when people ask questions to gather data for what they consider the basics about the person they are meeting–anchors such as: where are you from or where do you live or what do you do… These questions are social conventions, found in most social interactions, and I often find people get very uncomfortable unless I stick to socially normal answers. Try telling someone that the concept of “where are you from” is possibly not so relevant nowadays, and neither is “where do you live”, and most people squirm or stare or seem to mentally tag you as a basket case.

But let me return to my discomfort with that simple social question: So, have you resumed your work now?. The context was clear. My mother died around eighteen months ago, and for several years before that, I had been reducing my professional work to clear time and energy for caregiving. This person, aware that I was no longer a caregiver, assumed I would have reverted to the “normal” state of existence of doing “work”, given my qualifications and all that baggage.

Here’s the thing: “Work” is used in conversations for work done outside the home in a setting that typically earns us money or can be called a job or business or career, whatever. Point one of discomfort: the question’s implication that years full of intense caregiving were not “work”. I did not get into a dialog about it, recognizing that this person was only using language conventionally and did not mean to offend, but the fact remains that such terminology negates all the work that goes on outside jobs/ careers/ business settings/ offices. We use the term homemakers but we don’t actually consider home-making work to be “real” work. We laud mothers for the effort it takes to transform nasty tykes into (hopefully) polite, productive and educated social assets, but we don’t consider that work. We say, oh, looking after an ill parent is tough, but we don’t consider that work. Those are just activities normal people do for their families. Grouping it with other things called “work” is considered uncultured, against family values, against “love.” Work, someone once told me, is what you do for outsiders.

Of course, some things change over time. Seventeen years ago, a credit card company rejected my application because I said I worked from home and showed the agent my laptop as my office; the agent didn’t even bother to subdue his snigger. He waved away my income tax returns which showed that I was earning enough and I would not be a risk to his bank. Things are somewhat different now, because working from home is more accepted as “work”, but even today, the definition of work is applied only to some types of work and professions. Sure, careers have also changed with time. People no longer frown at the word, “event managers” and accept it the same way (almost?) as engineers. And we accept that paid caregivers are doing “work”, because they are caregiving as part of a job. But the same work, or more, done by a family member is not work. I don’t really know how and when things will change, but I no longer bristle at such negation of what was my major role for years. I explain what caregiving involves to some people and don’t bother to do so for others.

From the query: So, have you resumed your work now? that was my first discomfort–should I point out that I am not quite emerging after an over-long vacation of sitting on a deck chair on a private beach, pina colada in hand, the latest bestseller on my lap. I am emerging from one of the most tense jobs I have ever done, a job recognized medically as one of the most stress-inducing jobs.

But over, now, to that other word, resume.

Years ago, when my mother’s dementia started affecting her more and more, I adjusted my work accordingly, both in quantity and in the profile of work. Some changes happened gradually and automatically, others were conscious decisions, like refusing software projects or assignments that couldn’t be handled over email. because I couldn’t go to meet clients. But it was not as if I flipped a switch and moved from working full-time on serious “work” (let’s call that Point A) to drop into the nothingness of non-work. It was more like I morphed from a relatively conventional work profile into another, not well-defined profile, with some components remaining similar, others changing a lot.

Suppose caregiving had not changed my life direction, where would I have been today, what would I be doing? I have no idea. Maybe I would have stayed at Point A. Maybe I would have moved ahead in the same career, become–I don’t know–better paid, more powerful, more influential, a sort of an A-PLUS. Or I may have slipped down, become more scattered and ineffective, deteriorating to an A-MINUS. Or maybe I’d have switched to something else, a different career path, reaching some Point B, either as a successful person or a failure or sort of middling between them. Many people change directions nowadays, when so many opportunities are available, and changing direction is generally more acceptable. We’re far away from the days when persons joining a job checked for retirement benefits because they expected to stay there all their working life.

What is “resuming your work”? Would “resuming” involve returning full-time to where I was before caregiving came into my life, or in that same career path but somewhat better or worse placed (say an A or A-PLUS or A-MINUS)? Or would it mean snapping magically to the alternate career path at some Point B where I may have been instead? In any case, why should my future be seen in terms of where I was years ago (before caregiving started impacting my choices and path)?

I’m fairly sure that the person who asked the question hadn’t spent so much thought on it–this is such a normal question. We need pegs to categorize persons, and “work” is one of them. Happens all the time in some form or the other. I don’t socialize much, but about a month ago, on a rare outing, I met someone who asked me what I “did.” I said well, this and that, it all depends, I’m rather laidback. She persisted till I finally attached a label to myself; I said I was a writer. She (naturally) asked, Which book have you written? I said I had written some books and some short stories, but she may not have heard of any of them. So then, what else do you do, she asked, her tone insistent. I told her I did some work for dementia caregivers and had set up online resources. But she seemed dissatisfied–perhaps what I had told her was so different from the norm that she was having problems accepting it and adjusting to it. Or perhaps I sounded evasive or my credentials seemed shaky.

A few years ago, such a conversation would have driven me back to a reclusive life or made me very defensive or angry, but this conversation felt so surreal it stirred no strong emotions. Seeing her intense need to make me describe work she could believe in or found worthwhile, I was somewhat bemused. Was it mere discomfort with the unusual? Or did she think I was a loser of sorts and was wondering whether I was even worth socializing with? Maybe her insistence was more about her identity and self-worth than mine. Or maybe she found me fascinating 🙂

But I also felt that this type of conversation could intimidate someone trying to redefine themselves after emerging from a bereavement, or from a role now rendered irrelevant, or from any other intense situation. It could be embarrassing and unpleasant for someone trying to find a new balance, a new direction, after surviving some very tough times.

After major changes happen in our lives and before we can decide on a new direction, we need room to play, time to not fit into any pegholes, time to experiment, make mistakes, change and change again. I don’t think identity-pegging social interactions allow slack for this. I guess many of us find some socially acceptable phrases to deflect the pressure and judgment we may perceive in such questions, however “normal” or well-meant the questions may be. I remember, just a week after my mother’s death, people expected me to know what I wanted to do with my life. To have a plan, a direction. I am sure that if I tell a casual acquaintance that I’m still not sure where I am headed, eighteen months later, I would appear wimpy or lazy or downright irresponsible.

So here’s the deal. Eighteen months have passed since my mother died, and I don’t have a clear, definitive answer to that “What are your plans?” question, not even a clear answer to “What do you do?” Funnily no one asks other questions which I think matter more, questions like “Who are your friends now?” or “How has caregiving changed you?” or “What sort of things interest you?” or, most important, “What areas are you experimenting with?”

I have changed a lot in the last 15 years or so. Yes, everyone changes over time, we change with every day we live, with every choice, every action–but I think my changes have been in a different direction from that of many of my peers, in terms of things I’m now passionate about or interested in, things I no longer find interesting, my perceptions about society changes or inertia, on priorities, and so on. These changes affect the way I interact with others and the interests I can share with them. Maybe some changes are temporary while other changes will stay–only time will tell–but meanwhile, I have to find directions and priorities based on my current self.

In terms of work I do and things I am involved in: I feel very involved and committed to the dementia and care cause. I am doing other things too, some related to the complicated task of simplifying life, some related to non-dementia professional work, some learning of new things, some playing around, but nothing substantial enough for me to use the label “work.” Mostly, I’m struggling to find a balance between all of these.

Regarding my dementia related work, I am trying to arrive at a sustainable pace so that I don’t attempt so much that I burn out and I don’t reduce involvement to a level that makes me feel frustrated and useless. One activity that takes time and energy is maintaining my online resources. I also try to stay informed about the dementia care domain through various sources, and to pour back what I learn as updates to my website. Caregivers continue to contact me, as do some volunteers, and to the extent I can, I share what I know. I had some ideas on additional projects, even prototyped some, but they did not seem sustainable and I dropped them.

As I work through my idea list related to the dementia cause, I’m especially wary about whether a new project I take up would lock up more time and energy in the future. My on-going work on my dementia site has shown me how time-consuming it is to keep online resources up-to-date, and I don’t want to start anything new that would soak up a lot of my time in the future, because I may want that time for other things.

I’m not yet very sure how to balance all the other (non-dementia) activities I want to experiment with, but I have started batching ideas and also cleaned up part of other personal responsibilities, in an attempt to simplify life and create spaces in my days.

Soon I expect I’ll be “normal” enough, that is, I’ll be as overwhelmed as normally-stressed persons who struggle to achieve the elusive work-life balance 🙂

BTW, I’m always amazed at how ambitious people sometimes get on my behalf, how confident they are of all that I should be doing either because it would be good for me or fun for me. And how much they think I can squeeze into my day. Stuff like: You must get back to work. You must write a novel. You must do more work on dementia. You must write a book on caregiving. You must write a memoir. You must travel and meet people. You must enjoy! Ah, if only I were that sort of productive juggler 🙂

One more thing: I still get yanked into memories of my mother at unexpected moments, sometimes very intense. I find it difficult to talk about some episodes of the past or to look at things she owned. But I am coming around to accepting that these surges, these gaps, are part of what is “normal” for me now, and I let the feeling flow till peace comes.

I do wish the day had more hours. I think I’m not alone in that wish.

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Negativity, projections, and ageing

Over these last two decades, I have begun suspecting that most people don’t know how to interact with peers who are unwell and disabled; they mess it up, their discomfort/ disapproval is obvious, and then they go away blaming the unwell/ disabled person implying that they would have coped better with the situation when in fact they were unable to cope with even ten minutes of an interaction.

I have encountered this several times in the past few years, and I dare say, there were instances before that, too, but I was not clued in enough to notice them or feel a dissonance.

One aspect of this is creation of mental and social narratives and even fictional depictions. That is, how people form the story around the person and family in their mind and in the way they may talk about it to others or even include it in their fiction.

I’ve seen instances where writers pick up a few interactions they have had, give it a spin that reduces the nuances around the situation, and make it fit the story arc and narrative they want. Do they want a sympathetic elder who is being mistreated, or a family that is affectionate, or one that is overwhelmed, or are they aiming at a social commentary on how negligent society is to elders? Things like that. In this effort to do what their story needs–character development, story arc, conflict, tension, resolution–they perhaps don’t spare enough thought of how that type of depiction may impact persons on the “other side of the story.”

So a powerful novel may show how bad the daughter-in-law was to her ageing and frail mother-in-law, and if this novel gets traction, if it gets the readership and critical acclaim the author wants it to get–what will be the impact on daughter-in-laws who are struggling to do their best in far less black-and-white situations with far more complex aspects to balance?

And if the novel is based–loosely or in a thinly disguised way–on people around the writer, what will the social impact be for these unwitting fodder for the novelist’s writing project? Those are real persons out there, not cardboard tropes.

Soap operas and films, of course, end up doing this type of thing just too often, but I’ve seen similar problems in novels that have been critically lauded and have won awards.

Here’s the thing: even when it comes to the most sincere and well-meaning writer, I think the stories we make are the stories of what we think and what we want to think and what we are limited to think about by our own scared natures. And ageing, neglect, and dying are areas of large discomfort, and there is a limit to how brave and nuanced a writer can be, or even how informed the writer is about such situations. I guess negative or simplistic depictions around ageing and related family interactions will continue to be part of fictional depictions…

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The turning point, and becoming proactive

Thanks to Internet,  I was reasonably informed about how to communicate with my mother, and how to help her. I was also lucky that I’d managed to get a full-time person for her after our move. A one-bedroom apartment for my mother and the full-time attendant was set up specifically so that it was both roomy and safe and exactly met all that my mother and her attendant could need.

Yet, things were still not working out. There were episodes of rages and accusations by my mother, and attendants were unhappy, too. I would spend hours with my mother, and most of these went listening to her unhappiness and complaints about the attendant, about me, about what visitors said, or things she imagined because of what she’d been told by visitors or had imagined in her deluded, jumbled-up reality. I would end up spending most of my time calming her, but soon after, she was back to her agitated state. Sometimes, she was depressed because she did not understand why she was not “normal”. There were days she seemed happy and calm, and I noticed these were days when she spent a more structured day with less interactions or stimulus.
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Reshaping career and identity

Things did not improve after the initial adjustments and it slowly dawned upon all of us that the responsibility of looking after my mother was not going to be that simple, solved with shrinking-out-of-her-view and take-an-episode-at-a-time. This was an ongoing project.

My husband’s work involving a lot of travel. My son was in his critical years of schooling (close to the board exams state). It therefore seemed natural to me that I should assume more of the work required to cope with my mother’s situation. Besides, I knew her better than hubby and son. I was her closest relative, and had lived most of my life with her or near her, and was best tuned to understand her.

I was working from home anyway…
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Paring down to essentials

The process of adjusting life to cope with my mother’s situation began when her confusion and memory loss started becoming visible in longer interactions, well over a decade ago. She had not been diagnosed at this time (though we had been visiting neurologists) and we made these adjustments in response to her strange behavior and our failure to reach her through reason and negotiation.

My main focus of adjustment at this point was to create an environment that minimized her rage or frustration cycles. This was, I confess,  not as part of some well-thought out, compassionate and caring strategy, but a form of self-preservation. There was an air of helplessness and frustration. We had no idea she was suffering from a medical condition. Her “unreasonable” and “dictatorial” methods seemed parental meanness, of the sort movies depict, and I was trying to stay safe and sane.

For example, if she wanted her food served hot and got agitated otherwise, I tried my best to be around to make it and serve it hot.
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Care for everyone but a dementia patient…

Time to start writing about the changes I tried to make in my life to handle caregiving better. This is going to be another set of mistakes laid bare on the page, sigh, braided together with spots that worked…

But before I start examining and describing what I did,  let me step back to look at some basic premises.

A lot of people I meet say that everyone makes adjustments to take care of elders, and I think what they wonder is why talk/ write about something everyone does–surely, it could not be that different for dementia patients.

So I’ll start this phase of my blogging by describing my caregiving experience for my father, who was absolutely sharp mentally right to the end. Sharp, articulate, and very aware, even on the last day of his life.
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A common loneliness…

For the last few days, I’ve been recalling some of the challenges posed in caregiving because of my mother’s condition. These were places where her memory loss and confusion resulted in her saying and doing things that hurt her and people around her. They caused me repeated embarrassment and anger and frustration, they made me withdraw from people around me and effectively isolated me, and they made her fall ill and hurt herself. Most of the time, though I had begun to register that she was acting out of confusion (and not because she wanted to be mean), I had no effective way to reach out to her or to explain to others or generally make things better. There was an overall sense of helplessness and inevitability that I experienced.

I’d like to wrap up this part of my recollections by sharing her obvious sense of insecurity and isolation.

There were many incidents in those difficult years that showed how insecure my mother had started feeling. In addition to making me promise again and again that I would take care of her, she made it a point to complain to everyone about me, and when they talked tough to me, she’d tell me, “See, did you see what he said? You must do your duty properly.” Essentially, she was using these complaints to make sure I didn’t forget or neglect my duty. Earlier, I’d seen it as manipulation done out of dislike for me, but over time I realized this to be a twisted thinking of hers to get what she wanted.

She felt that if others were always telling me what my duty was, she would be safer.
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Ignorance is not bliss…

After making yesterday’s post, memories have been flooding me. Memories of how people I knew well, good, well-respected, educated and informed, religious people would say things that could only be called cruel to my mother, because they refused to understand my mother’s ataxia and dementia, and how these affected her. People whom I repeatedly requested to change the way they talked to her, but they refused, claiming I was exaggerating things or just exercising “control” over my mother. That I was not doing enough to make my mother okay…

I could probably exhaust a month’s worth of entries over these memories, but I’ll select just a few and write of them today.

Take this elderly gentleman in our neighborhood, who was mentally sharp even though in his eighties, and he loved meeting people. He could remember everyone’s name and face and life history and hold interesting (well, almost) conversations with people. He would drop in to meet my mother sometimes. For some reason, it bugged him to see that she was not socializing with people, and stayed in the apartment all the time.
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Day 2 and warming up to the blogging

Yesterday I thought I’d do a neat fit-into-boxes categorization of a month’s worth of blog entries, but I found I was too scattered in my thinking, so I’m letting my instinct take over till I get back my “blogging fingers.”

Here, for example, is one thing that bothers me…

Sometimes, when I tell others (non-caregivers) of the stress that dementia caregivers face, or of the challenges posed in looking after dementia patients, they semi-shrug and say, “Oh, we know the problems of looking after elders–doesn’t everyone! But our parents brought us up, so it is our duty.” Some even say, “You think those people have it tough because of their parents? You should see my parents! Really, my parents are the limit!”
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Ramblings on love, hate, and a life worth living

February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status 🙂 A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.

But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.

Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. One day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.
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a paradigm shift by moving beyond concepts

I mentioned yesterday that my effectiveness as a caregiver improved and my life became less stressful once I moved from a role of ‘doing things right’ to one where I became an informed and involved caregiver.

It seems obvious, in hindsight, that caregivers should understand how dementia affects a person to become effective and creative in their role.

But I experienced an even bigger shift when moved beyond book-knowledge  and allowed myself to soak the concepts at an emotional level. The real benefit came when I extended my understanding beyond the dry theory level to a place deep into the heart.
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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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behavior of concern

A few days ago, I had the opportunity to discuss “Understanding Challenging Behaviour” with a number of professionals involved (or about to be involved) in dementia caregiving.

It got me thinking 🙂

There is, of course, no shortage of difficult/ challenging behavior when you are caring for a dementia patient. The nature of the disease keeps the patient disoriented about time and space, keeps memories disjointed or wrongly connected, affects even basic aspects like identity and interpreting the surroundings. A patient may not recognize a close relative, let alone a carer he/ she sees every day. Everything to a patient can be a challenge, and in response to this, the patient may react with withdrawal or aggression or any of the range of ‘challenging’ behaviors.

Then, there is this concept of  “behavior of concern” which is rather simple:  not every strange/ not-normal behavior of a dementia patient needs to worry us. Every model on dementia caregiving tells us we need to focus on behaviors with serious/ unacceptable consequences. Simply put, a behavior of concern is one that upsets or harms the patient or the persons (or community) around the patient. The rest of strange behaviors can, well, be set aside 🙂
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thought experiments and dementia-related priorities

In a rather interesting presentation I attended, an expert asked a roomful of persons associated with dementia caregiving: how many of you believe you will get dementia? Picture a roomful of people, sixty or more. Only two persons raised their hands.

The percentages are not quite that way, folks 🙂 . The 2009 report on dementia facts and figures (USA) gives Alzheimer’s as the sixth leading cause of death, and the major risk factor is age. According to American statistics (see 2009 report from (PDF file)at Of the current population in USA that is 71+ in age, around 11% men and around 16% women suffer from dementia (there are more women because they live longer). It is estimated that more than 20 percent of women reaching the age of 65 would ultimately develop dementia (estimated lifetime risk), compared to approximately 17 percent of men.
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