Many of you reading this post know of Norman “Norms” McNamara. You’ve read his e-mails, his Facebook posts, his LinkedIn group discussion pieces, and you’ve probably even communicated with him personally. You know that he was diagnosed with early onset Alzheimer’s disease. He is a champion of Alzheimer’s, at least in the UK, and has done more in a year than you and I will ever do in a lifetime to bring awareness to people about Alzheimer’s and to educate society in how to better adapt itself to people with memory impairments. Norms is a social media whiz to boot, and seems to have found a whole second life in educating people about Alzheimer’s disease.

But Norms just found out that he doesn’t have Alzheimer’s.

This past week, Norms was rediagnosed with Lewy Body dementia.

So what happens when a person who has wholeheartedly embraced his diagnosis of Alzheimer’s disease and used that diagnosis to help hundreds of thousands, if not millions, of people with the disease and their caregivers, suddenly finds out he doesn’t have that disease?

First a word about Lewy Body disease. With apologies to the Lewy Body Dementia Association and other groups focused on this specific type of dementia, I’ll try and explain. LBD presents many of the same symptoms of Alzheimer’s, hence why it is often misdiagnosed. It is named after the person who discovered it, Fredrick Lewy, who, in 1912, while he was examining the brains of people who had had Parkinsons disease, discovered irregularities in the cells in the mid-brain region. These irregularities, microscopic protein deposits found in deteriorating nerve cells, became known as Lewy’s bodies (see http://www.lewybodyjournal.org/ and http://www.lbda.org/). Norms is not alone in that many people receive an early diagnosis of Alzheimer’s disease and then are rediagnosed with LBD when other symptoms present themselves. According to the Lewy Body Dementia Association:

Symptoms that differentiate it from Alzheimer’s include unpredictable levels of cognitive ability, attention or alertness, changes in walking or movement, visual hallucinations, a sleep disorder called REM sleep behavior disorder, in which people physically act out their dreams, and severe sensitivity to medications for hallucinations. In some cases, the sleep disorder can precede the dementia and other symptoms of LBD by decades.

Back to Norms. Obviously Norms has had the same question with regards to his awareness-raising activities: Now what? In the past few days, through his social media posts, he has been grappling publicly with this question, and at this point he seems to be somewhere between “so what” and “thank goodness I called it UK Dementia Awareness Day and not UK Alzheimer’s Awareness Day!”

I’ve been grappling with this too. Recently I edited a lovely and helpful little caregiver’s guide for caring for a loved one with dementia (Note: A moment of shameless self-promotion — freelance editing and writing is what I do for paying work). The author, a husband and care partner with his wife (who has Alzheimer’s disease) used the terms “dementia” and “Alzheimer’s disease” interchangeably. With my “editor” hat on, and knowing the confusion that exists regarding the use of the terms “Alzheimer’s disease” and “dementia,” I asked the author if his wife had actually been diagnosed with Alzheimer’s or if she had in fact received a more general diagnosis of dementia. First he said “Alzheimer’s” and then he said “dementia.” Clearly there was some confusion at that end as well. So I suggested that a few words of explanation regarding the difference between these terms might be in order. The author found an article by a Dr. Robert Stern of Boston University that explained the difference. Other than the first line of the article, which said that “dementia” was a term now used to replace “senility” in seniors (ARGH!!!), it wasn’t bad, and I summarized the best parts of the article and included it in the caregiver guide, along with proper references. (This article can be found at http://www.bu.edu/alzresearch/newsletter/documents/ADCBulletinSpring2010FINAL.pdf)

Basically the term “dementia” is used in two ways. First, it’s used as an umbrella term, under which are sheltered all the different types of diseases and illnesses that cause cognitive impairment. “Dementia” is the more all-encompassing term that has been adopted by just about every country except the USA to describe memory impairment. And then, as Dr. Stern’s article pointed out, “dementia” is also used to describe a group of symptoms that might be caused by any one of a number of diseases or illnesses (or, as the article emphasizes, treatable conditions such as vitamin deficiencies). What I appreciated about Dr. Stern’s article is that he described a list of symptoms of dementia, rather than listing symptoms of “Alzheimer’s disease.”

So, I had already been struggling with definitions when Norms got his news. I haven’t e-mailed or otherwise reached out to Norms. I guess this blog post is a sort of response. I’m sorry that he has to go through this sudden switch, not only personally but publicly. I hope he isn’t discounted by people or organizations who say “Well, if you haven’t got Alzheimer’s, you can’t speak for me/us.”

But Norms, I have to agree with you. Thank goodness you were progressive enough in your thinking to use the word “dementia” in UK Dementia Awareness Day. That’s the way it should be. Here is the simple truth. “We” (the global “we” that includes everyday people, people in organizations that represent the various types of dementia, medical professionals, researchers, pharmaceutical companies) — we just don’t know enough about the brain to start diagnosing people early on with a specific type of dementia. Why are we labeling it at all? Pardon my ignorance, but I don’t even think the treatment (such as it is) differs much during the early stages of memory loss, no matter what the doctor thinks the precise diagnosis is. In fact, many people are diagnosed with Alzheimer’s and given Aricept or whatever, when in fact they never had it in the first place. So it’s not like we are inadvertently hurting people more if we don’t stick a label on their disease right away.

Paradoxically I am all for memory screening and early diagnosis. But would it be sufficient to say to a patient and his or her family that they are in the early stages of memory loss (or dementia) and this is what they can do about it? Is it sufficient to say:

“We’ve ruled out treatable causes of dementia. You don’t have a vitamin deficiency. You aren’t dehydrated. You don’t have a urinary tract infection, nor do you have a thyroid problem or a brain tumor, and we have ruled out drug interactions. Look, I can’t see inside your brain so I can’t tell what is physically going on in there, and even if I could, I couldn’t be certain, because, let’s be frank: There are people who, post-mortem, have had autopsies and the ‘tangles’ in the brain associated with Alzheimer’s were found, except those people had no symptoms of Alzheimer’s while they were alive. So we really can’t be more certain until we’ve given this a few more years and we see where the symptoms take us. So I’m going to tell you that you have ‘dementia’. Here are your drug options, and, you should really get more exercise and eat better, especially because this could be vascular dementia, in which case we want to make sure you don’t have any additional strokes. You should also take up a new hobby, socialize a lot, and generally exercise your brain. You will face challenges in the future, such as giving up your driver’s license. You should also have an honest discussion with your family because no matter what is causing your dementia, at some point in the future — may it be along time — you will need additional care and you need to have your affairs in order while you can still have a say in what happens to you and what matters to you. In the meantime, do as I said — here’s a suggested diet and exercise program — and enjoy your life and your loved ones. Your community memory consultant will be contacting you soon with regards to local resources.”

OK, that last part is a bit of a dream, at least for us in North America. But what would be so wrong with the above scenario?

Well, what’s wrong with that is that there are organizations (no names mentioned) who have a stake in labeling as many people as possible with Alzheimer’s disease. But let me reiterate. We don’t know enough about how the brain works to start labeling people with a disease. Let’s all pull together and push for more research into understanding the brain. Let’s better understand how our brains are affected by other diseases that we might have, such as diabetes and heart disease. Let’s start to understand how our brains are affected by what we put into our bodies and by the environment. Let’s understand why some brains are affected by aging while others are affected when they are only in their 30s, 40s or 50s. We need to compound the progress made in the study of the role of genetics. Then once we understand how the brain works, we can start to understand the various diseases that undo cognitive function and how to address each one. In the meantime, we could avoid the anguish caused to patients and families by misdiagnosis. We need a Dementia Association or a Brain Society. We need Dementia Awareness Month. We don’t need more labels.

I CAN! I WILL! is an information and resource-sharing website — an “idea library” — where people from around the world can share ideas on everything to do with Alzheimer’s and other forms of dementia. Visitors to the site can browse through such diverse topics as raising awareness about dementia, dealing with early memory loss, innovative programs and activities, creating dementia-friendly communities, combatting isolation and more.

On the site, ideas are organized into books titled by interest group (for example, people with dementia or professional carers). Visitors can click on a book and the “chapters” of the book are listed, broad categories of ideas bundled under chapter names. Click on a chapter name and the “pages” of ideas are listed. Visitors can also comment on the ideas others have posted.

A unique aspect of the website is its contributors, who are people with dementia, family care partners, professional caregivers, volunteers, medical professionals and many others. The site provides a space where people can benefit from the collective life experiences of kindred spirits living around our world. To date there are ideas posted from the USA, United Kingdom, Canada, Czech Republic, Hungary, Venezuela and more.

The website is not static, as people add new ideas on a regular basis using the “Submit Ideas” form. Repeat visitors to the site will always find something new. To personalize the ideas, contributors are encouraged to send in a photo and talk a bit about themselves. Ideas are also accepted in video and audio format for those who would prefer not to type. The site will eventually list hundreds of ideas in its library.

The ‘I CAN! I WILL!’ project was spearheaded by Richard Taylor, PhD, a person living with dementia, who presented the idea to a working group comprised of people with dementia, care partners, Alzheimer’s Disease International (ADI) staff and other interested parties at the annual ADI Conference, held in Toronto in March 2011. ADI developed and is hosting the site based on input from Mr. Taylor and the working group.

The name of the website — I CAN! I WILL! — reflects the idea that the first step to taking on anything new in one’s life is to think “I can do this,” but the real sign of commitment to change is the loud and clear cry, “I WILL!” The hope is that among the visitors to the website are people who will read about an idea and decide to implement that idea in their own lives, organizations or communities and in turn, share their experience with others.

I CAN! I WILL: www.alz.co.uk/icaniwill

Facebook: http://www.facebook.com/ICanIWillDementia

Contact: Laura Bramly, Editor – standupspeakout2011@gmail.com

Every day I get a slew of e-mails from LinkedIn, updating me on discussions in the numerous groups I at one time thought I should join. Most get deleted, but there are a few groups that I make a point of checking in with, particularly Changing Aging and Alzheimer’s & Dementia Professionals. Occasionally I open the e-mails from the Alzheimer’s Association group just to see what they’re up to. Today I checked the latest discussions in this group and was intrigued by one entitled, “The Long Goodbye” – What do you think of this term?

Those of you who know me, know exactly what I think of the term “The Long Goodbye.” But after reading the first six comments on this discussion plus the one lone sane voice in the wilderness who found this term to be counterproductive, I felt compelled to let anyone else who cares to listen know how I feel as well. If you’re on LinkedIn, I highly encourage you to read the discussion and comment on it. When you read the other comments I think you will feel a whole rash of emotions, as I did–anger, sadness, memories of my mother, regret over what I did and didn’t do, frustration that we still have SO far to go. And all those emotions built up into the following response from me, which — for better or worse — I posted on the group this afternoon:

And watching someone fade away from cancer is what? The short goodbye? Is caring for someone with cancer NOT a goodbye because a) there is a chance of survival, or at least, a hope for survival until pretty much the end or b) even with cancer, the person still knows themselves and the names of the children, and therefore must still be human? What are we saying goodbye to? The endorsement of such terms as “the long goodbye” cuts to the core of what we think makes a person still be human, still be themselves; as long as their brain is still intact, they must be human.

I’m not being naive. I had to say “goodbye” to my mother. Over the course of the 8 or so years that she was slowly losing her memory due to what turned out to be vascular dementia, I realized that I had to say goodbye to the mother I knew, and I had to do it alone because everyone else in my family was pretty much in denial. But towards the end of her life, an interesting thing happened. I realized that I was so busy saying “goodbye” that I forgot to say “hello” to the new person that was my mother — I even forgot to see that my mother was pretty much the same person that she always was (only nicer!) because I was allowing the shadow of the disease to cloud my perceptions.

Fortunately I had a few months of this new awareness when I was able to appreciate the person that she was and to work with her to find out what she was still capable of — to say hello to my mother. I’m so sorry now that I spent so much time saying goodbye. What a waste. So now I advocate against the use of such terms as “the long goodbye” and “shadow of themselves.”

Alzheimer’s and other forms of dementia — OK, right now there isn’t a cure — but we treat the people who have these diseases as if they are already gone. Diagnosed and then, that’s it. Fade from view. Instead, we have to work to enable people with various forms of dementia, to create a world where they can function for as long as possible. It’s hard to create that kind of society when society is busy being told that it’s the “long goodbye” and therefore, what’s the point. Language such as this is not helpful and creates, as Kathy says, fear and misunderstanding. That a volunteer with the Alzheimer’s Association, the ONE organization that SHOULD be championing the people with the disease, would make a point of using this type of language specifically to create fear in people with dementia and their loved ones, is… shocking.

Please note that I don’t believe this group to be in any way an official communication tool of the Alzheimer’s Association in the USA–at least I hope not. However, we all know how they perpetuate the “long goodbye” and “shadow/shell of their former selves” myth through their advertising for fundraising, and it’s not going to stop unless we can finally get them to understand that we don’t need such negative terminology to give us “a good slap across the face with a cold, dead fish” to know what Alzheimer’s is all about.

This is the most recent letter sent by Richard and myself regarding the project. Please read to learn how your story can be included on the website when it is launched.

Hello friends of the “I Can, I Will” web based stand up and speak out initiative of the world’s Alzheimer’s Association – ADI.

We Need your help NOW! This is not a letter asking for money. We are asking you to share your life experiences, you ideas with other kindred spirits around the world!

Laura and I have been working closely with the hard working folks at ADI and their web designers, and we are within about two or three weeks of having the site “go live.” It will be a page accessible through ADI’s home page. We will send you the direct address the day it goes live.

We are writing you this one last time before we go “live” because we believe from the first moment this shows up in cyber space it should be filled with good information – not just a skeleton waiting for the meat and muscles to develop-and that it will become a vital resource for people around the world during World Dementia Awareness Month this September. When you read the postings on the website, you will see that September is not some abstract concept but is actually World Awareness month in your household, your community, your country, our world! You know WE are the WORLD!

Would you please provide a portion of meat and some muscle to the site?

The meat comes from each of the 300 or so of you who will receive this e-mail and your ideas of how you have, can, and will stand up and speak out. Perhaps you have some personal “best practice.” Perhaps you have had a successful event in the past. Perhaps you talked to your family about your diagnosis and it went well, and you’d like to pass along what you learned to others. Perhaps you have done something via social media that has raised awareness. Something, some idea, that we can post in one of our books of awareness-raising activities, tentatively labeled People with Dementia, Family Carers & Friends, Medical Professionals, Professional Carers, Alzheimer’s Associations, and Others.

We need you to stand up for this concept and become a part of it yourself. Send us your picture, permission to publish it, and if you want to your e-mail address and permission to publish it if you so desire. Send in your posting tostandupspeakout2011@gmail.com. If you need the format again, please e-mail Richard and Laura at the same e-mail address. At the end of this letter you will find samples of actual postings sent to us thus far.

Now the muscle comes from each of you committing to contact three (or more) people who will also send us “copy,” and their pledge to contact three more people and ask the same of them. That should be enough to get us up and going. We are looking/hoping/planning on the Alzheimer’s Societies of individual countries to embrace this idea, and perhaps start one of these site for the people they serve, in the native language(s) they speak. But we get a little ahead of ourselves. For now – send us a posting and speak to three people who will speak to three people about sending us postings.

Thank you for your interest and support thus far. It is because of your initial support that this concept is where it is today, and it will still be because of you that it will be what it will be years from now. Thank you, thank you, thank you.

Laura and Richard

_______________________________________________________________________________

SAMPLES – The following letters, which will be included on the site when it is launched, will give you some idea of the format and tone of I CAN! I WILL! letters.

On the site we will publish cyber books. Each book will be filled with your suggestions. There will be one book with ideas that people living with the symptoms of dementia might consider implementing, plus books for their family carers and friends, medical professionals, professional carers, Alzheimer’s Associations and others. This site will develop into a resource for individuals, groups, organizations and countries to consult when they are looking for ideas of how to stand up and speak out.

Here are some ideas from folks from around the world, both with and without dementia. These are real ideas, contributed by real people, and these will be live on the website when it is launched. These ideas are meant to inspire you to contribute your own ideas. Send your ideas to standupspeakout2011@gmail.com.

Hallo:

My name is Nina Baláčková and I live in Prague, Czech Republic. I am 52 years old. I have a very good husband and two adult children. I have Alzheimer’s disease from 2007.

I try when I can to speak up. Two months ago, I organized a meeting in our library about Alzheimer‘s and other dementias. I ask my doctor-psychiatrist to talk about this disease and I was there like her patient. People could ask me and her questions about this disease. The director of library told me later that it was very successful.

I am grateful that I am still able to do this. This is because I have some special form of Alzheimer’s disease, not typical as I am “young.” Secondly, I know about my problems and I can speak about it. For me being able to speak about my disease and my problems was not good at the start of my problems because the doctors thought that I did not speak true and that I fabricated the problems with my memory and reasoning and thinking. It took 9 months to find out that I have really Alzheimer’s disease! I was at many doctors and I was in hospital for observation — in Psychiatry hospital — for 3 weeks.

I would also like to share with other people fighting with Mr. Alzheimer about some things that help me.

Every evening I prepare my schedule for the next day. I write on paper all the activities and then I enter a reminder in my phone to inform me of a meeting or appointment. Usually I have two times reminders, just to be sure

My second idea is that for every “difficult” thing like washing clothes I prepare a scheme or checklist: For example:

- choose the clothes
- put in the washing machine
- add washing powder
- switch on washing machine
- put a reminder in my phone to remind me when the washing machine will finish

Then I do all these points and check them off as I do them.

With best regards Nina Baláčková

E-mail: bariz@centrum.cz

Hello, I am Tina Hackel, and I live now in my home country Switzerland.
Living with my late husband Alex in Florida for ten years, we have together and at home experienced his journey with Mr. Alzheimer increasingly intruding into our partnership and marriage.

One problem Alex did NOT have was the kind doctors prescribe a blue pill for. He was still, in his seventies, a healthy man, full of energy, and he loved to make love. And I, nineteen years younger than him, loved to make love, too.

Mr. Alzheimer didn’t change that. What changed — as one of the first symptoms showing up — was Alex becoming more and more careless about the condition of his bathroom and especially the cleanliness of his body. This turned me off. Asking Alex to read a “How to…” book didn’t help; to argue didn’t help either.

Finally we found a nice solution: I moved out of our master bedroom and king size bed to a
spare twin bed. And I asked Alex: “Please, feel free to visit me here anytime – but, please, take a shower first!”

Alex did not only take a shower. He put on some fragrance and a beautiful silk Kimono, he looked great and the expression of excitement in his eyes surely turned me on, too!

Best wishes to you and your family,
Tina Hackel, Switzerland
tinahackel@yahoo.de

Hello:
My name is Beatriz Valles. I live in Venezuela and work as a volunteer at the Alzheimer’s Foundation of Venezuela, Chapter Nueva Esparta.

I am a Language Therapist and for five years I have been investigating the characteristics of conversation between people with dementia and their primary caregivers.

In the initial results of this research, I have been able to demonstrate that conversation is an activity that is influenced by the healthy conversational care partners who actively participate and help the person with dementia to compensate for their limitations. The care partners thus support the person with dementia to remain active and present in the conversation, despite the negative characteristics that many researchers have described such as: anomia, paraphasias, circumlocutions and repetitions. Thus, when evaluating how the person with dementia participates in conversation, it is necessary to also evaluate “how” and “how much” people talk around the patient.

The knowledge gained in this research has helped me to develop workshops to provide guidance to caregivers on how to stimulate conversation with their loved ones with dementia; this type of experience has also allowed me to learn much more about this topic so I am currently drafting a guide for stimulating communication between people with dementia, aimed to the caregivers and the patients families.

E-mail: brvallesg@gmail.com

Hello, I’m Mona Johnson and I live in the state of Wisconsin, in the United States of America.  My father developed dementia when he was in his 60s.  After reading about scientific breakthroughs and improved diagnosis, I encouraged Dad to seek testing right away, and to get the best treatment possible.

Years after his death, I wish we had moved more slowly.  We might have avoided stressful tests and the medicines that seemed to make him worse.  I might have spent more time just being with Dad, and less time trying to “fix” him.

If you’re a caregiver or family member, I would encourage you to recognize that the science behind dementia diagnosis and treatment is still evolving, and that each person’s dementia may be different.

I think it’s best to be skeptical when you hear generalizations about symptoms, diagnosis, treatment and care.  Be cautious when experts talk about what “they” [people with dementia] need — consider the individual instead.

This does not mean you should ignore the needs, safety or comfort of the person with dementia.  Some issues must be addressed immediately.  But when you can, take the time to educate yourself about the state of the science, and try to separate hype from reality.  Don’t be influenced by advertisements or headlines about the latest study.  Think carefully about the risks and benefits of each treatment.

Above all, spend some time listening to the person with dementia.  If communication is difficult, try to think about what he might want based on his life history and current situation.  Take into account his age, overall health and specific preferences.  Relate to him as a person, not as a patient.

Sometimes “slow care” is best.

Best wishes on your journey, Mona

Email:  mona@tangledneuron.com

Website:  www.tangledneuron.info

The following is in response to a wonderful letter by Mike Donohue, a person living with dementia, which Dr. Al Power posted on his blog at http://changingaging.org/alpower/. At the end of Mike’s letter (which you should read), Al mentions the Stand Up, Speak Out project that Richard Taylor and I are undertaking with Alzheimer’s Disease International. I thought an additional word of explanation about the project was needed, and I posted the following in the comments section. Please read this to learn more about what is at the heart of this very exciting project.

Please see the post “I Can! I Will! Stand up and speak out about dementia” for specific information about how you can contribute to this project.

Thank you for the mention of the I Can! I Will! stand up and speak out about dementia website project. The website should, in fact, go live sometime in July.

A lot of excitement is being generated about the site because it will provide the arena for an international exchange of ideas between people with dementia, care partners, families, friends and more — people will be able to submit their own thoughts and stories on how they live positively with dementia and how they are sharing this news, this awareness, this anti-stigma with others in their families, their communities and their countries. Through this site, people with dementia and those who know that dementia does not have to mean the end of a quality life, will finally be given a voice… one voice in one central location.

In truth, our hope is that the site does not become a place for complaining; we want it to be a place for action and for hope, for sharing of ideas that someone on the other side of our planet, say, in Thailand, can read a story submitted by someone in the Czech Republic and say, “Wow I CAN do that in my life/community/country. In fact, not only CAN I, but I WILL!”

I am trying not to use the word “forum” to describe this project, because it is NOT just another discussion forum. It’s a library of ideas…it will look more like a blog except that the authors will number in the hundreds, or, if we do our job right, in the thousands. And people will be able to comment on other people’s posts, much like I am commenting on your blog post here. And they will be able to “like” posts and share them through social media.

We are asking for people to send in their stories now tostandupspeakout2011@gmail.com so that when the website goes live it will already have lots of personal stories and ideas for raising positive awareness about dementia and breaking the stigma. Videos are also welcome, but they have to be uploaded on youtube or some other public site first. You can also send an email tostandupspeakout2011@gmail.com and I’ll send you our most recent update letter and samples of postings we have received thus far from places such as the Czech Republic, Switzerland, Venezuela and the USA. These posts will give you an idea of the format.

We’ve received more posts since I put together that sample document; just yesterday I got one from Hungary; my husband found me crying at my desk as I read it. No, not from the sadness of this particular person’s story of his journey with dementia–there was little sadness–but from the ideas he had about ways to combat the stigma, the actions that he had already taken, and from the obvious frustration he felt that we are not moving fast enough, that few people are listening. Well, with this new website, people will have no excuse not to listen. There have to be SO many voices on this site that it can’t be ignored! So you need to send in your postings!

We invite postings from people with dementia, care partners, professional caregivers, Alzheimer’s Societies/Associations (believe it or not my local one here in Arizona is doing some pretty cool stuff that involves actual people with dementia talking to other people–revolutionary, I know), volunteers, advocates, medical professionals, long term care administrators… anyone who has had an experience in their lives that has made them realize that people who say “there is no living with Alzheimer’s” are just plain wrong and that saying such things is unproductive at best and outright damaging at worst.

The website will be a subset of the Alzheimer’s Disease International website. Richard and I are so thankful for the time and effort ADI has dedicated to this idea, to this global movement, because I truly believe with every inch of my being that it will be a global movement. And ADI is a global organization that wears a lot of hats, but right now they have their “giving voice” hat jammed firmly on their heads. They are based in England and I think, personally influenced by the policy and action around dementia in the UK and much of Europe, which is light years (and I mean light years) ahead of where we are in the US.

The site will be promoted for September as a place where people can go to get the real story on Alzheimer’s and related disorders, and to get ideas on how they can raise awareness of dementia and erase the stigma. However, the site will exist and grow long after September is over.

Please join us. There will be a press release when the site goes live. I hope you will share it with as many people as you can.

Let’s talk. Just us girls, OK? Guys, we’ll get back to you in a moment.

In my years as a baseball mom, soccer mom (short-lived, thank goodness), PTA volunteer and community member, I’ve had a few opportunities to sit around with women in my age group, let’s say in the 30 – 50 age range, who start to open up about topics that are particular to our suburban, family and career-centered lives. Two conversations stand out for me. One was about forgetting things, and the other was about “What drugs I’m on.”

Let me tell you, us 40ish-year-old women, we are a forgetful lot. Or just absent-minded and distracted. Or sleep-deprived. And perhaps it’s not just us; my teenage son recently put the milk in the cupboard where the glasses belong rather than in the fridge (something I remember doing as a kid too!). However, it seems to get particularly bad when you’re a female in this age group, or, if you’ve just had a kid (mom-brain; if you are a new mother or are married to one, you know what I mean).

My memory is certainly not what it was when I was in my 20s, although, my worst memory flub happened was when I was 29 and pregnant with my first child. I completely forgot about a luncheon appointment and left someone sitting at a restaurant! But lately, I’ve been forgetting words mid-sentence. I think about the name of a person or place, but when I go to talk about it, I’ve already forgotten it and I can’t complete the sentence. I’ll switch the order of words, and I’ll substitute one word for another, and the substitution is not always a good one! The scary thing is that many times I don’t realize I’ve switched or substituted the word until I see the person I’m talking to looking at me strangely. And my spelling is the pits. I now reverse letters in words and this is something that I have never done before. Perhaps I’m just getting lazy…Thank goodness for spell checker.

I also do all the usual things that many other women (and men!) do, such as worrying that I haven’t turned off the stove after I’ve left the house. I am really bad at remembering that I’ve left something cooking on the stove, until my husband smells the smoke and reminds me (did I mention I have no sense of smell?). Now I set timers…Thank God above (and my husband who is always on alert) that I haven’t yet burned the house down.

The funny thing is, that if you have a conversation with a bunch of other women who in the same age group, as I did, you will find out that most have the same symptoms. And some women will tell you stories that will make you feel as if you aren’t losing your mind after all. The story that made me feel better was from a woman who locked her keys in the car while it was still running. Fortunately her kids weren’t in the car too. Whew. I haven’t done that yet! And my sister, who left the water in the upstairs bathtub running and forgot about it. The water leaked into the downstairs… nuff said.

The other conversation that stands out in my mind is: “And what pills are YOU taking?” This one was a real eye-opener for me. Somehow I feel like I am breaking some sort of Suburban Mom Code of Conduct by breaking the silence surrounding this topic, but it has to be said: just about every mom you meet is probably on some sort of antidepressant or anti-anxiety medication. I once sat around with five or so other moms, waiting for our kids to finish up their activity. I’m pretty closed-mouthed about whatever meds I happen to be taking, but not so the ladies at this table. Somehow we got on the topic of depression and one mom started talking about the medications she’s taking, and recommended such-and-such pill, combined with something else, and if that didn’t work, try this other little blue pill or whatever it was. Another chimed in that she tried that but it didn’t work, so now she’s on xyz. To which, another replied that she’d had bad side-effects from that one, so did anyone have any recommendations? And of course, someone did, because they were on something that was working great, so why not try it? I kept silent; no way I was sharing what I was on, although truth be told I don’t think I was at the time. But I was astonished that every woman at that table was depressed or anxious, or both, and on medications for it. Every single one.

Now that I’ve made it my life’s mission to break down the stigma attached to dementia, I’ve become the go-to person for family and friends who are concerned about their parents or about themselves. I love being able to let people know a bit about dementia, because even though I have SO much to learn about dementia myself, most everyone else out there knows nothing. And that’s just wrong.

As such, a friend of mine recently talked to me about how she is having trouble remembering words and how she can’t finish sentences as a result. She’s getting worried. A lightbulb went off in my head and I put two and two together; my first question to her was: What medications are you taking?

There are many many reasons as to why a woman in her 40s might be experiencing this sort of memory loss. Stress, hormones, child birth, distraction, too busy, too much on her mind, lack of sleep, poor diet and more. But it occurred to me, right then and there, that perhaps it’s the meds that are contributing to her memory lapses. I know that when I take sleeping pills for prolonged periods of time (like every night for two weeks, for example) or the longer I take anti-anxiety medication, the worse my memory gets. Given the propensity for women my age to be on antidepressants, anti-anxiety medications or sleeping pills, and at the same time, becoming more and more scatter-brained, could there be a correlation? I’m no doctor; I simply pull together information and make hypotheses.

Next time you get a new prescription, rather than throwing out the information about the list of side effects, read it. You may be surprised. I almost guarantee that it will list memory loss, light-headedness or some other form of cognitive side effect.

If you can’t wait, then take a look at the following two links: http://helpguide.org/mental/anxiety_medication_drugs_treatment.htm

and

http://depression.about.com/b/2003/11/25/forum-a-subtle-side-effects-of-antidepressants.htm

At this last link you will read a number of posts by women complaining of memory loss associated with antidepressants and anti-anxiety medications.

Just like anyone else who walks out of the house to drive the car, yet leaves the keys hanging by the door, I often wonder if I am a candidate for full-blown dementia of some sort, particularly since my mother had it. However, I recently read a list of memory loss challenges put together by a fellow who has early onset Alzheimer’s disease. Here was a list of how memory loss exhibited itself in this particular person. I read the first few items and I must say, they seemed pretty common to most people’s experiences of memory loss. Forgot the pot on the stove. Forgot an appointment. Am forgetting words. But his list went on, and on, and on, and on. And on. I was on page 5 when I had to stop and attend to something else, and I’m still not finished reading his list. He made me realize that what I am experiencing is not dementia and shouldn’t be confused with early onset Alzheimer’s disease. He also reinforced the respect and awe that I have for people who have dementia and how they manage to live their lives to the fullest given their memory disabilities.

However.

If you are having any sort of memory loss whatsoever that is inconveniencing you, is affecting your life, is a change from what you’ve been experiencing previously, is concerning you in any way, I encourage you — no — command you — to go see a doctor. There can be many reasons for memory loss, and perhaps it means a switch in medication or some sort of therapy to help you deal with the issues for which you are on meds in the first place. Or perhaps you need to eat better or just get more sleep, or reduce the stress in your life. Here is a web page that lists common causes for memory loss, the majority of which are treatable: http://alzheimersweekly.com/content/10-types-dementia#Cause. I’m also an advocate for memory screenings. How do we know we are getting worse if we don’t know from whence we start?

I also want to point out that I’m not advising that women (and men) stop taking antidepressants and anti-anxiety medications. While I think that the level of drug use in North America says something about our way of life (but that’s a whole other discussion!), antidepressants and anti-anxiety medications have their place and are absolutely necessary for some people. Given the choice between depression and all that it can entail, and a medication that helps a lot but might cause some memory loss, most of us would choose the drug.

I’m still trying to figure out where I am going with this particular post. I’m not sure what conclusion to draw. I could just leave it with admonishing everyone to go see their doctor. But I think we need to raise a red flag here. The point is, we just don’t know enough about the brain to mess with it the way we do. If antidepressants and anti-anxiety pills cause memory loss, what are the longterm effects? To be sure, memory loss in middle-age women is nothing new. But are we creating something worse, memory loss beyond what our grandmothers might have experienced, those who still had to deal with hormones and stress and children and sleepless nights but who didn’t have the benefit of medications? Are we creating a whole new level of dementia above and beyond the tsunami of Alzheimer’s that we expect as the baby boomers age?

I guess we will find out.

I realized last week that while I have a fairly comprehensive Resources list on this website (but one that is still a work in progress), it excluded a very important category: links to the blogs or websites of those who have dementia and are telling the world about it.

If you want to learn what it is like to have dementia and what works best for people with dementia, the best place to start is by talking to a person with dementia. If you don’t know of anyone directly, then click on the Resources link on this website and go to any of the several websites and blogs I have listed there. Not to knock care partners (or care givers) of course, as I was one once, what I like about these resources is that we get to hear about dementia from the person who has it, and not as a second-hand report, and thus, we can learn a lot.

As you probably know, early diagnosis has been given the official “OK” this past week from the National Institutes of Health and the Alzheimer’s Association via new guidelines for doctors to diagnose dementia before it becomes “full blown.” However, as noted in a Los Angeles Times article: “There is nothing that can be done for them, not yet,” says Creighton H. Phelps, director of the National Institute on Aging’s Alzheimer’s Disease Centers Program.

What he means is there is nothing that can be done medically; there are no drugs as of yet that will halt the progress of Alzheimer’s in someone who is diagnosed with mild cognitive impairment and “preclinical Alzheimer’s, in which biochemical and physiological changes linked to the disease have begun but symptoms have yet to appear.” There are no drugs.

However, when you take a look at the websites and blogs of people who have lived successfully with dementia for many years (with many challenges to be sure and with the assistance of dedicated care partners, families and friends), you will discover that something indeed “can be done for them.” You will be amazed by the exhausting work these people are doing to raise awareness of dementia, by the rich lives they lead, and by the wide circle of friends and family — and therein the secret lies, for all of us.

P.S. If you have links to the websites or blogs of people that I don’t have listed here, please let me know via the Comments for this blog post.

Yesterday I put an ElderCareRead Life Scenes 1 book in the mail for my husband’s cousin, who wanted to see one of the books. Recalling that he might have said he had a friend or a relative who was dealing with dementia, I included a note to let him know how best to use the book. I chewed on the cap of my pen for awhile, trying to come up with some words of wisdom that could fit within the size restrictions of the note card. Brevity is not one of my virtues.

Finally I wrote that the book was meant for a person with dementia to read with another person (or on their own); they shouldn’t be read to. I added that the person with dementia needed to be given the space to read, to find out what they were capable of, to recall and reinforce their reading skills. If not provided with the space, if simply read to, they would not be able to feel their way around the book and take a chance on taking in the information on the page.

I realized after I’d written this that I was drawing upon a LinkedIn group discussion (The Alzheimer’s & Dementia Professionals group) entitled “What is excess disability for people with dementia?” The gist of the discussion is that there is a certain amount of learned helplessness that takes place for people with dementia when their well-meaning (or impatient) care partners do everything for them. An example that was presented in the discussion was getting dressed. Do you lay out clothes and let the person with dementia take the time and dress themselves? Do you present a selection of clothes, let them chose their outfit, and then let them dress themselves? Or do you just dress them and get it over with? I even hate that I’m using the words “let them”  – what I mean is, do you give them the space to dress themselves?

If you don’t give a person with dementia the space to [safely] do some things for themselves, they will quickly forget how to do those things. The same goes for reading. If you read a book to a person with dementia, they will forget how. My stepfather ended up reading everything to my mother, and it wasn’t until I heard her read the text inside a greeting card out loud that I realized that, given the right amount of text, the right size of font, and the space to read in her own time, she could read and in fact, enjoyed doing so. That’s how the Life Scenes book got created. And she read it. By herself.

Give ‘em some space. Miracles can happen when you do.

Today was Watson’s debut on the game show Jeopardy. Unless you’ve been living under a rock, you will have no doubt heard about the IBM super computer that goes well beyond the “Big Blue” computer that beat chess champion Kasparov in 1989, and which will be a contestant on this popular game show, competing against the two top past contestants, Brad and Ken. The publicity for IBM is unprecedented!

I won’t go into detail about how much information this computer has stored on it (the Bible, the entire Encyclopedia Britannica, Wikipedia, to name a few), how it accesses the information, and how it gets past the puns and metaphors that are inevitable in many Jeopardy questions. You can look that up on the Nova website (http://www.pbs.org/wgbh/nova/tech/smartest-machine-on-earth.html).

Safe to say that its greatest advance is that it knows how to interpret “natural language.” But when the narrator of the Nova documentary said, “What can Watson be used for in the future?” I answered immediately, “Alzheimer’s. A person who has been diagnosed with incurable dementia can download their memories to this computer and it can be their brain after they’ve forgotten.”

I once kidded with a friend who has dementia, that there are no artificial brains. If you lose a leg, need a hip replacement, lose a hand, have a bum knee, a bad heart, a bad lung, chances are you can get it replaced. Not so a brain. Until now? Can we replace a brain? Would we even want to?

I don’t see Watson as replacing a brain as much as being the “go-to” source for the person with dementia, a constant caregiver who doesn’t mind answering a lot of questions but with a seamless interaction that makes it hard to know where the person ends and the computer starts when it comes to communication.

I don’t think Watson’s technology is quite there yet, but it’s the most “human-like” computer that the public has seen to date. It learns from its mistakes. It makes jokes. It might be a bit slow on the uptake but it does eventually figure out the inevitable puns in the Jeopardy questions. It doesn’t seem to “hear”; on the game show the questions are being fed to the computer via a text file, even though on the NOVA documentary it seemed that Watson had voice recognition.

However, it’s the size of five refrigerators, with a cooling unit the size of five more. That’s obviously a problem, although not so long ago it took a computer the size of a room to do less than what’s in our cellphones today. And I was wondering how it could handle memory-loss issues such as forgetting how to do up your shoe laces. The person would have to tell its artificial brain that he or she can’t remember how to do up their shoe laces. Then the computer would have to tell the person, step-by-step how to do it. I’m not quite sure how that interaction would happen.

But, I can imagine a grandparent with dementia meeting up with their grandchildren and saying to their Watson brain, “Who are these people?” Perhaps by that time the Watson brain would have facial recognition software and could scan faces, compare them to its database of the person’s personal memories, and tell the grandparent, “That’s your granddaughter Sarah.” Perhaps it could tell the grandparent who this kid is before even being asked. Perhaps it could flash a few photos just to prove the relationship, much as we think of past events when we see someone again. All this takes place in milliseconds.

And because the machine “gets” jokes, puns and metaphors most of the time, it could provide its human with appropriate answers to questions, allowing the person to participate in conversation. Really, everyday conversation can’t be a far leap from Jeopardy. Most of our day-to-day conversation is fact-based: What do you have to do today? What shall we have for dinner? Where are my socks?

The neat thing is that, while the artificial Watson brain is pretty much all facts and business without the emotion, the person with dementia retains the emotion, the human-ness that is missing from the artificial brain. Together they could make a great team.

If you are reading today’s blog expecting a well-researched piece of literature, well, it’s not. It’s a gut feeling that I’ve had for some time, and I read two articles today that back up my gut feeling. And my gut feeling is that our laid-back, leisure-laden, no-work Western version of retirement is contributing to dementia.

Now, in order to prove this, I’d have to compare data of the rate of dementia in people of typical retirement age (let’s say 65 and up) in our country to other countries, and I’d have to look at the patterns of work along with the cultural work ethic of nations when it comes to people of retirement age. I’d also have to look at the average age of death (perhaps not many people of typical retirement age live long enough to have dementia in some countries) and I’d have to study the attitudes towards aging in a selection of cultures around the world. But I have two manuals and a Hebrew song book due and I don’t have time to do that most interesting study right now (but would be interested in hearing from those who have).

So I’ll just go back to my original unproven hypothesis that our Western version of retirement is contributing to increased rates of dementia. Here’s why.

It’s starting to become acceptable knowledge that finding and having purpose leads to a longer life with less chance of losing cognitive ability as one ages. There is an article, the link to which has been traveling around the Internet over the past 24 hours, which can be found by clicking here. The article is called “Sense of purpose reduces Alzheimer’s risk.” Researchers have found that “People who said they felt they had a sense of direction in their lives were significantly less likely to go on and develop the condition.”

Up until retirement age, we have a purpose, whether we like that purpose or not, whether we chose that purpose or not. We have to get up each morning and get the kids off to school. We have to make food, get in our cars, get to work. We have to clean house, do laundry, go shopping. We have to visit our aging parents. We have to book a vacation. We have to celebrate, mourn, socialize, spiritualize. We have a whole raft of things to keep us going, to propel us forward. It’s our purpose.

And all along, we look forward to retirement. Kinda how people of many faiths look forward to a heavenly paradise, we look forward to the day when we do… nothing. And it’s that nothing that is killing us.

I live in Phoenix, one of the retirement capitals of North America, if not the world. Names like “Leisure World” and “Sun City” adorn retirement communities. During the winter the roads are crowded with vehicles sporting license plates from Alberta, BC and Minnesota. To be sure, I’d have to admit that most of the retirees living in Leisure World have purpose, particularly those who are snow birds and look forward to relatives visiting almost continuously and also towards the inevitable time when they must pack up and go north, or south, depending on the season. Some people are quite active in the politics of their communities, becoming members of the board. Many retirees take advantage of organized activities, golf, pot luck dinners and the like.

But can man live on bingo alone? I think not.

In our Western society (and I’m really just thinking North America here) most of us move forward towards that mythical day when we can stop. Retire. We come to a screeching halt and, do nothing. Because we have “retired,” we don’t have to find any other purpose than to be retired. Because there is no place of employment we have to show up at, no kids screaming for food, no aging parents to care for, we have no purpose. And because we’ve been too busy throughout the first chunk of our lives fulfilling everyone else’s needs, we have neglected to find purpose ourselves. So we head into the last phase of our lives rudderless and purposeless. And we are now finding that this attitude can contribute to dementia.

Where I find our retirement mentality carried over most — and where it should be least welcome — is in to our long term care facilities. Precisely at the time when we ought to be injecting the high-octane, super energy gas into our independent living, assisted living, skilled nursing and memory care residents, instead we usher them into la la land. Think of the last long term care facility you have visited. What sort of environment are they striving for? Peaceful, luxurious, don’t lift a finger, bingo three times a day, three meals a day, housekeeping, quiet, no stress, no work, we bring everything to you… these are words that come to mind when I think of long term care facilities. How is anyone supposed to find purpose in these places? And why would the administrators of long term or memory care facilities even THINK to help their residents find purpose when their residents are supposed to be living out their lives in blissful retirement?!

I’ve written about Ivy Bean before. Ivy is 104. Between her Twitter and Facebook accounts, she now has 55,000 friends and followers. Yesterday she was driven via a Bentley from her home at Hillside Manor (long term care) in Bradford, England, to #10 Downing Street, at the invitation of the Prime Minister of England. Please read this short article about her tweets of her experience (the one about the bathroom is most droll). What’s next, the Queen of England? I would not be in the least surprised.

The point is that the residents of Hillside Manor are encouraged to dream and are enabled to carry out their dreams. Ivy Bean could just as well be languishing in “Sunset Hills” (a made-up name) home, watching TV and having her nails done (not that there is anything wrong with that). But I think that if she was, she’d be dead, or have mild cognitive impairment at the least.

We need to encourage everyone, no matter the age, no matter the condition, to dream and then help people to fulfill their dreams. This is what we all ought to be striving for, even if the person who has the dream, has dementia. Because not only does having purpose, a job, a task, a motivation, help to stave off dementia, it helps those who already have the disease to slow the progression. I truly believe this. Note that I’m differentiating between purposeful activity and a slate of activities designed to fill time. Purposeful activity, activity that moves a person towards their purpose, is different from killing time. Purposeful activity might include opportunities to give back, creative endeavours that the person finds fulfilling, activity that moves a person towards their stated goal, or activity that the person simply finds extremely interesting and fulfilling. Note that purposeful activity COULD include bingo if the person’s goal is to rule the bingo world. And yes, retirement can include goals; a person living in a memory care unit can still have goals. But just activities for the sake of activity?

If you are the care partner of someone with dementia, rather than thinking about the person you are losing, think about the person your loved one could become. How can you help him or her to find their purpose? How can you help them to carry out their purpose?

And think about not retiring!