Tag Archives: Dementia Alliance International

Dispelling the Myths of Dementia, presented by Kate Swaffer

Last week Dementia Alliance International held it’s very first A Meeting of The Minds Webinar at a time suitable to Australians. It made a wonderful change for me not having to get up in the wee hours of the morning to particpate!

This was our first DAI event in EST time, and I suspect we mixed things up when setting it up, as the reminder that came through from Eventbrite said it was being held 8.30pm on Friday 26th September, when in fact it was 11.00am AEST.

Sincere apologies if anyone arrived in the Zoom room in the evening and we were not there.

This is the recording of the session for anyone who wants to watch it, plus my notes and the power point presentation for anyone who wishes to read them.

Presentation notes:

I want to welcome everyone to our first Webinar to be held at Australian time, Dispelling the myths of dementia, and thank you for attending today. We hope this will be informative for you and want to also answer any questions you might have and we will have an opportunity for discussion at the end of the presentation.

If you have questions about the material presented as we go along and are afraid you might forget them, please either enter them in to the chat client or interrupt us so we can get them answered as we go along, and as well as we can. We don’t want anyone to forget their question just because they had to wait. Please note, this first slide says this webinar is being recorded and will be posted as a public video on YouTube. If you are using a webcam and are visible on the screen during the webinar, your picture may be recorded as part of this video. If you do not wish for your picture to be recorded, turn off your webcam by clicking on the camera icon in Zoom, or simply move out of the picture frame. If you are concerned about your image being recorded and need help, please ask.

Whilst this is not a Master class specifically discussing dementia, we feel it is important to remind you we do not provide medical advice at any time.

This was our first DAI event in EST time

Panellists
• Leo White, AU, DAI Board member (apologies; unavailable due to illness)
• Kate Swaffer, Australia, DAI Board member

Myth is neither a lie nor a confession: it is an inflexion. (Roland Barthes, via Richard Taylor PhD).

In that sense, therefore, a myth is is a modulation of the voice or a change in the form of a word, usually modification or affixation, signalling change in such grammatical functions as tense, voice, mood, person, gender, number, or case. In a sense, it is an angle or a bend.

Richard Taylor is a person living with the symptoms of dementia, probably of the Alzheimer’s Type. He is not a physician. He has become through his own research and life a reluctant expert. He encourages you to discuss these myths with your physician, and draw your own conclusions based upon your own research and life and the advice of professionals. He has been a mentor and very good friend to me, someone who I have often looked to for wisdom and inspiration. He always reminds me to remember not to decide for myself or others will decide for you.

Roland Barthes’s many contributions to philosophy were collected in his book Mythologies (1957) and he frequently interrogated specific cultural materials in order to expose how bourgeois society asserted its values through them. For example, the portrayal of wine in French society as a robust and healthy habit is a bourgeois ideal that is contradicted by certain realities (i.e., that wine can be unhealthy and inebriating). He found semiotics, the study of signs, useful in these interrogations. Barthes explained that these bourgeois cultural myths were “second-order signs,” or “connotations.” A picture of a full, dark bottle is a signifier that relates to a specific signified: a fermented, alcoholic beverage. However, the bourgeoisie relate it to a new signified: the idea of healthy, robust, relaxing experience. Motivations for such manipulations vary, from a desire to sell products to a simple desire to maintain the status quo. In the context of dementia, this is interesting, as the myths of dementia have been hard to dispel.

Definition of a myth:
1. a traditional or legendary story, usually concerning some being or hero or event, with or without a determinable basis of fact or a natural explanation, especially one that is concerned with deities or demigods and explains some practice, rite, or phenomenon of nature.
2. stories or matter of this kind: realm of myth.
3. any invented story, idea, or concept.
4. an imaginary or fictitious thing or person.
5. an unproved or false collective belief that is used to justify a social institution.

1830, from French Mythe (1818) and directly from Modern Latin mythus, from Greek mythos “speech, thought, story, myth, anything delivered by word of mouth,” of unknown origin. Fable, word
Myths are “stories about divine beings, generally arranged in a coherent system; they are revered as true and sacred; they are endorsed by rulers and priests; and closely linked to religion. Once this link is broken, and the actors in the story are not regarded as gods but as human heroes, giants or fairies, it is no longer a myth but a folktale. Where the central actor is divine but the story is trivial … the result is religious legend, not myth.” The general sense of it being described as an “untrue story, rumor” dates from 1840.

I believe the fifth definition – an unproved or false collective belief that is used to justify a social institution – is held onto by our health and aged care system, to justify their position of power over people with dementia, allowing it to justify it is appropriate and also their duty of care to completely ignore our basic human rights, by locking us up. No-one with mental illness is automatically locked up for their own good, and yet the frail elderly and people with dementia re locked up all the time.

Popular myths of dementia

1. There is no point diagnosing as nothing can be done

I see significant value in an early diagnosis, regardless of the fact there is no cure, and treatment of any kind for less than half of those diagnosed with dementia. This is not based so much on having the capacity to ensure your end of life wishes are in order, but allows you to take control of your health, and work on positive psychosocial and non pharmacological interventions such as improving your health, exercise, and so on.

2. Dementia is a normal part of ageing

Alzheimer’s disease and other dementias are not a part of normal aging. Almost 40 per cent of people over the age of 65 experience some form of memory loss. When there is no underlying medical condition causing this memory loss, it is known as “age-associated memory impairment,” which is considered a part of the normal aging process.

But brain diseases like Alzheimer’s disease and other dementias are different.

Age-associated memory impairment and dementia can be told apart in a number of ways. In general, a memory problem may become a concern if it begins to affect your day-to-day living. Most older adults do not go on to develop Alzheimer’s disease or other dementia.
Below are some examples of age-associated memory impairment and memory loss that may be related to a dementia.
It’s important to know when to see your doctor about memory concerns but it’s equally important to know that forgetting someone’s name doesn’t necessarily mean that you are getting dementia.

3. We are ‘fading away’ and ‘not all there’

Even though we may be changing, we are always still all there. A person dying from terminal cancer is all there, and so are people with dementia. We change each and every day, and after every significant experience, and it is no different for people with dementia.

4. We can’t communicate with you

Even in the later stages of dementia, when some people lose the ability to speak, they can still communicate – if others take the time to watch and listen to the non verbal signs of communication.

Story of Val… at Clayton nursing home, and Nelly in the dementia unit at Walkerville

More popular myths of dementia

1. We don’t have memory loss therefore can’t possibly have dementia

Many people become forgetful as they become older. This is common and is often not due to dementia. There are also other disorders such as depression and an underactive thyroid that can cause memory problems. Dementia is the most serious form of memory problem. It causes a loss of mental ability, and other symptoms. Dementia can be caused by various disorders which affect parts of the brain involved with thought processes. Most cases are caused by Alzheimer’s disease, vascular dementia, or dementia with Lewy bodies. Symptoms of dementia develop gradually and typically become worse over a number of years. There are many dementias where the person does not experience any, or very little memory loss until the late stages of the disease process, although because of the activities such as Memory walks or Memory cafes, most people think if there is no apparent memory loss, then the person cannot have dementia, which is wrong.

2. We can still speak and function in public therefore we can’t have dementia

This is a common misperception or myth, especially for those of us diagnosed early in our disease. Just because we can still speak, and appear in the 30 minutes someone spends with us to be functio9ning well, does not mean we don’t have dementia. The analogy of the swan, calm and serene on the surface, paddling below the surface to stay afloat is very apt. And then there are many of us who have support from someone at home, and use laminated lists and memory joggers, that others never see. My husband sees that sometimes I cannot remember what something is called, and these days, even sometimes his name, but by using generic language more and more, I can still get away with appearing to be functional. I always use notes now as well, especially when I am being interviewed or presenting like this. Many people with dementia appear to be functioning well, even though they have increasing disabilities, and the more we learn to manage the disabilities, I believe for many, the longer we will function independently and well. Christine Bryden and Australia, Helga Rohr in Germany, Agnes Houston in Scotland, Richard Taylor in the USA and many others who have been diagnosed for a long time, are still appearing to function well, even though I know for many of them their symptoms are increasing.

3. We don’t feel pain

There is a growing body of research that has found that many of the symptoms often written off as ‘just a part of the challenging behaviours of dementia’ – agitation, aggression, withdrawal or repeatedly asking for attention – is actually untreated pain.
Indeed, pain is the biggest cause of such symptoms – including even language breakdown – according to a recent review in the journal Clinical Intervention In Ageing.

However, the authors concluded that while pain is often the underlying cause of some behaviour, patients may be given ‘inappropriate’ sedating medication instead.

It’s not that dementia causes pain, but the 7.7 million people in the world with dementia tend to be older and therefore more prone to aches and pains. Many patients lose the ability to talk, but even those who are coherent may struggle to find the right words to describe their discomfort.

The problem is that not all health professionals or carers are yet aware of this, so they dismiss changes to behaviour such as becoming agitated as part of dementia, says Pat Schofield, professor of nursing at the University of Greenwich.
Historically, we used to believe that people with dementia do not feel pain because of the effects that their illness has on the brain but in recent years we realised that is not so; they are just as likely to suffer with pain but they cannot express it.
‘Think how frustrating that must be – you can’t find the words to tell someone, “I’m in agony”, or, “This is hurting”.
Just like everyone else, of course people with dementia feel physical and emotional pain. We are, after all, still human beings…

4. People can’t live well with dementia

Living well at any time of our life is probably what everyone wants, but add in the diagnosis if dementia, and the prescribed disengagement, and many of us think we can no longer live well. It is possible, and although working hard supporting ourselves with non pharmacological interventions, and on remaining positive, and meaningfully engaged is not a cure, it does improve our quality of life and well being. There is a growing body of research to support this, and as we are most likely further away from a cure than we were 10 years ago, it is imperative we strive to live as well as we cal. I call it the Olympics of my life, and although I am terrified of the day when I wild no longer be independently functional, for now, it has increased my sense of well being.

I firmly believe if we treat the symptoms of dementia as disabilities, rather than a death sentence, as you would if you lost your legs in an accident – you would either get fitted with artificial limbs or a wheelchair, go through rehabilitation, and get on with your life accommodating the disabilities, we will live better lives in spite of a diagnosis of dementia.

Other myths of dementia

1. We know how to “cure” Alzheimer’s… all we need do is spend more money on research.

There is no cure for dementia and no medicine that will reverse it. However, there are some medicines that may be used to help in some causes of dementia. Medication is generally used for different reasons. Firstly, as treatment to help with symptoms that affect thinking and memory (cognitive symptoms); unfortunately many treatments are used to modify ‘challenging behaviour’, when in fact what is needed is better education in understanding the needs of a person with dementia. We need research on the non pharmacological and positive psychosocial interventions for dementia to improve our wellbeing and quality of life, not just for a cure.

2. Alzheimer’s Disease is not dementia – briefly explain dementia
3. Eat more ****** and you will be “cured” or at least the progression of your symptoms will slow down
4. You can’t “live” with Alzheimer’s disease, you can only Die with and from it.

Living well with dementia

1. The attitudes of researchers and health care professionals need to change on this
2. The language of dementia needs to change
3. Positive things are happening regarding living well with dementia as many of us around the world are doing and speaking about publicly. It may not be possible for everyone, but is ifs possible for far more than was once thought.

Alzheimemr’s Australia have updated their Dementia Language Guidelines, and they can be found on their website. It is part of their dementia friendly communities tool kit.

“People will forget what you said; people will forget what you did. But people will never forget how you made them feel.”

Our Vision – “A world where a person with dementia continues to be fully valued”.

“Never doubt that a small group of thoughtful committed citizens can change the world – indeed it is the only thing that ever does.” (Margaret Meade)

We have recently updated our website, and you can now sign up to receive our weekly blogs when they are published… Click on the BLUE button on the left had side of the screen.

Reminder: Membership
Membership of Dementia Alliance International is exclusive to people with dementia; click on the GREEN box on our website.

Family carers, professional service providers, researchers and health care professionals are welcome to join our newsletter mailing list, and support us through donations, click on the BLUE or BLACK boxes.

Thank you for attending today and for being part of our global village of people with dementia. We will now open it up for discussion on the topics and any other questions you might have. We sincerely appreciate it and hope this presentation has been valuable for you.

Editor: Kate Swaffer
Copyrigtht: Dementia Alliance International 2014

Video of Master Class 1: I’ve Been Diagnosed with Dementia. What’s Next?

On September 3, 2014, over 20 people gathered online in a “Zoom room” via video conferencing to learn how to plan and take control of their lives after a diagnosis of dementia. Our teachers were two DAI board members, both with dementia: Sid Yudowitch (USA) and Sue Stephen (Canada).

If you missed the class or would like to experience it again, here is the video.
 

You don’t look like you have dementia, by Ken Clasper

ken clasperOne of our members and an online friend, Ken Clasper writes a blog Living well with Lewy Body Dementia. Last week he published the following article, You don’t look like you have dementia. Ken writes well, and shares his personal experience of living well with Lewy Body Dementia candidly and poignantly. It is not sugar coated, just honest and telling all sides of his experience of living well with dementia, the positive and the negative.

The topic for his blog we are sharing today is one that almost all of us talk about. Richard Taylor and Sid Yudowitchalso gave a brilliant presention on exactly this topic in Puerto Rico. Thank you Ken for allowing us to share your blog here.

You don’t look like you have dementia

by Ken Clasper

“As with many neurological illnesses there is nothing noticeable about our condition. It’s not like a broken leg or arm where there is a plaster cast which is obvious, or someone who is blind and has a white stick.

But how many times have you been told the same old words, you do not look like you have dementia,
I often wonder if it’s down to the fact that people feel embarrassed to talk to you about it, then just open their mouths and this falls out. I have been out walking with my wife on numerous occasions, and someone has stopped and spoken to her, then asked your clearly how I am, instead of asking me.
My dear wife always answers with the same words, ask him yourself, he may have dementia, but he has a tongue and can speak and think for himself.
I have to ask what dementia looks like? There are times I have spoken out and asked if people wanted me to have” I have dementia tattooed on my forehead” or should I be wearing a pair of horns like the old Vikings.
I was tempted to have a sweat band printed with those words once, but then thought it would bring me down to their level.
It’s very strange these days, but I know that I am not the only one who has hear this being said, and sometimes, it gets hurtful as if people simply don’t believe you.
I do think that part of this is because years ago dementia was classed as a form of madness and those with the illness were locked away, or put into hospital wards out of the way.
They also think that everyone who has the illness sadly sits in a corner dribbling, and I find that offensive. I have has people from social workers side of things who knew very little about Lewy body dementia, and made me feel like a Martian.
I have also been given verbal abuse from a carer at a conference, because I got lost for words. At this time to help me cope I would often make a comment about my moth eaten brain, which I did at this event. Never thinking of what would happen. This lady waited till I let the room for the toilet, and nabbed me when I walkedv out of the toilet saying that I was dis respective to these with dementia. I tried to explain that I had Lewy body dementia and she used the same old words. You do not look like you have dementia. Later on when I was on a panel answering questions this lady got up and walked out, but never apologised once.
Some people think that everyone who had dementia is deaf, as another social worker person kept shouting at me at home one day and then would come right up to my face, and shout at times. I am a mild person but this lady was very lucky not to have been slapped on this occassion because she also came out with the same old words. You do not look like you have dementia.
We are not weird we simply have an illness which is not visible like many other people, and while we have dementia, it does not own us. We also have a tongue and can think for ourselves given the chance
 So please stop this form of stigma and treat us with respect and dignity.”


Copyright Ken Clasper 2014

Global advocacy of people with dementia

SDWG-run by pwdThe Scottish Dementia Working Group (SDWG) set the foundations as the first working group of people with dementia in the world, run by people with dementia, to advocate nationally and locally on the issues facing us, including policy within their government and Alzheimer’s Society. They were my inspiration to work on giving a voice to people with dementia a voice in Australia, and to being a part of setting up Dementia Alliance International.

It was ground breaking, and others have followed their very impressive lead. The European Dementia Working Group was established in 2012, and the Alzheimer’s Australia Dementia Advisory Group was established in 2013. Ireland have now also set one up, based on the Scottish experience, and other countries are progressing towards their own, some of them finding their voice through their association with the work of DAI.

The global movement of people with dementia having a voice is gaining momentum, and Dementia Alliance International is proud to be part of the movement, and at our Board meeting this week we were very excited to welcome new Board members. DAI has representation on the Board now from the USA, Canada, Australia, Ireland, Scotland and Germany, and our circle of friends covers even more countries. Please join us in welcoming our new Board members;

  • Agnes Houston (Scotland)
  • Helga Rohr (Munich)
  • Chris Roberts (Wales)
  • Leo White (Australia)
  • Scott Russell (USA)
  • Sid Yudowitch (USA)

These are indeed very exciting times for people with dementia, and the catch cry of ‘nothing about us without us’ is now being realised, rather than being ‘just a catch cry’ often previously used by organisations wanting to ‘tick the bosx’ that they had given us a voice…

The SDWG have recently published the Core principles; ‘Core principles for involving people with dementia in research’  and I urge you to read the publication;  you can download it here Core-Principles_SGWG

One of Australian consumer groups, the Alzheimer’s AustraliaConsumer’s Dementia Research Network (CDRN), of which Leo and I are members meets soon, and we will be presenting this to that group. Members of the Alzheimer’s Australia CDRN have talked about publishing a document about our group and the work we do, and this will support that well.

We also want to work with all countries to set up their own DAI group of people with dementia, working alongside of us, but with a shared vision of ensuring people with dementia live well and have an authentic voice in the things that matter to them.

Once again, please join in welcoming our new Board members; their passion and professional experience, along with their previous advocacy efforts will lead to a significant contribution to the members of Dementia Alliance International.

Editor: Kate Swaffer
Copyright: Dementia Alliance International © 2014

Wise words from the heart of Richard Taylor

OLYMPUS DIGITAL CAMERAAs the editor for DAI, this week I am posting a blog written by Richard Taylor PhD, insightful as always, and full of honesty, bravery and wisdom. I personally have been a subscriber to his newsletter, which has not been written so regularly since he was diagnosed with throat cancer over 18 months ago, and I know I have missed his writings. I suspect he has missed his writings! Thank you for sharing yourself with us again Richard.

Richard speaks:

Hello, within the past couple of weeks I have stumbled across a new pocket of clarity of thought residing somewhere between my ears. I don’t know where it came from, I don’t know how long it will be here, but I do now realize I can’t think things through, I just sit down and start up my old selectric typewriter and I type. Formerly, I mulled over ideas, tested them against what I knew, researched my conclusions. Now I just sort of put a clean sheet of paper into the machine and start thinking out loud.

It feels sooooooooooooo good, to have some of my mojo back. Maybe it’s the new vitamin B-12 shots at work, maybe, maybe, maybe. I am trying to enjoy it, use it while the door remains open. I am now writing lots and lots, responding to other’s writings lots and lots. Most times I am eventually clear in my message/thoughts/position. Sometimes I realize I am not.

Along with a new found spontaneous focus/attention has come an ongoing nagging awareness that everyone does not share my sense of urgency in addressing the absurd/counterproductive/dehumanizing/neglectful manner through which the world is responding to the fact that half the world is now much older than the other half. And with that fact comes a divide in priorities, spending, political conversations, and from my point a view a very troublesome divide in how we treat/respect/appreciate/understand the respective other half of the population. Technology does not seem to have helped pull us together. Governments, mostly still populated by one half of the population, but increasingly elected by the other half, seem to respond to divide by dividing us more, and more and more.

But, as usual I digress/wander/repeat myself/reveal myself.

The sense of urgency inherent in realizing the dehumanizing stigmas that are currently being promoted by the very organizations who goals should be to re-humanize dementia has been refocused on how quickly can we find a cure, not how quickly can we improve the lives of folks living with the symptoms of dementia. Great minds, great government’s, great universities, great NGOs, giant drug companies who all are driven by their own needs to survive and holds lots of conferences in nice places and make speeches about going to war to defeat dementia – each and mostly all of these forces have aligned with each other to raise more money and support to “cure” dementia (actually Alzheimer’s to use their word). This wrong is wrong in oh so many ways, I can’t count them.

But back to yours truly and the reason I write this. I need to take some time away from the chase, away from the darkness, away from the dark forces. I need it for myself to fully enjoy these moments of clarity. I need it to make the semi annual readjustment to the fact that my own sense of urgency is not shared by many, many others. That is not to say we don’t agree of goals, it’s just the objectives/the strategic planning/the time lines/the willingness to invest more/to readjust priorities/to balance between thinking globally and acting locally/the devil that resides in the details of living life to its fullest and its best – these details need to be addressed, now. We need less “think tanks/groups/pieces” and more action plans. We need more evidence and reasoning, and less visioning.

Yes, awareness is spreading even as the darkness is promoted. Self advocacy seems to reside in the hearts, minds, feelings, and utterances of more and more of us living with the symptoms of dementia.

Yes, on the whole the world and some individuals are better off now than they were five years ago (speaking of folks living with dementia).

Yes there are pockets/moments/places/people/and more and more mostly smaller organizations who understand us, get “it.” In the long view of things, in the long run, things are still mostly slowing down in the wrong direction and/or speeding up in the right direction.  It is fitful progress subject to lots of changes and pressures. For myself I am convinced there is not enough progress to make much, if any difference in my life. Perhaps in the lifetimes, the demetia times of my grand children – but it is only a perhaps. The current steps in the right direction are matched almost exactly by stronger (if fewer) steps in the wrong direction.

To say, to feel, to act like there is no need to hurry, no need to keep building pressure, resisting the forces of resistance is ill advised. We can quickly lose our gains with one set of election results, with one distracting international event, with a thousand other distractions and priorities. We shouldn’t have to compete, but we do.

I’m taking a month off/away/observing/writing/hanging on – preparing for what will probably be my last hurrahs come Fall and next Winter.

Thanks for wandering around with me and this posting. Back soon – with more.

Richard.

Copyright: Dementia Alliance International and Richard Taylor PhD
Editor: Kate Swaffer

“Dementia: My New World” by Kate Swaffer

This weeks blog is by me, Kate Swaffer, a co-founder and Board member of Dementia Alliance International , about how I felt when first diagnosed with younger onset dementia a few years ago.

I do not feel that desperate now, and have gone on to find ways to live well with dementia, through self advocacy and empowerment, and connecting with other people living well with dementia. The story below was written and published in LINK Disability magazine in 2008, and highlights the anguish I felt; I have not included it all, but it can be read in full at the bottom of the page here.

The video clip is how I felt about the prospect of going into residential aged care, and is not meant to be ageist at all, but simply how I felt at the age of 49 and 50 about the possibility of living in a dementia unit designed entirely for people over 65. It gives a glimpse of what it was like inside my head and heart.

“Dementia: My New World”

“Dementia is an uninvited visitor to my world, an unwelcome early 50th birthday present, one where the old me seems to be rapidly moving away to a new me. I am being dragged along on this journey with no way to get back home as it races along like an express train without brakes. I read then I forget; I read, I take notes, and then I forget; I read, I highlight and take notes, and I still forget. That photographic memory I once had is gone, dead and fully buried. My high functioning mind has slipped away, sometimes showing itself like a ghost, teasing me into believing it will be okay, but just outside of my reach. Words now have no meaning and whole patches of my memory are disappearing.

The mountain I am climbing is finite, but even if I get to the top there will be no grand planting of my flag nor will I have remembered the climb, and when I come down, I won’t remember having been there. Some of my friends inform me I am not aphasic, that I am not remembering any less well than they do, that their world is the same as mine. They say I am getting old and this is what it is like, so get used to it. I ask myself, ‘What would they know?’ They are wrong. It is different…

It is insidiously depriving me of a normal existence, and is very humiliating and awkward to live with, stealing my soul, and threatening my very existence. It makes me nervous to go out. Every day now feels like a brand new one, except that my body feels very old and tired. I realise that writing about my dementia is not an option and that no matter how long it takes to make it legible and worthwhile to read, it is important to the management of this disease. It is possibly the only form of therapy that will ease my stress and tears.

Most days are now an effort not to just sit in a corner and cry, not to just give up or to give in to it. It requires a great amount of emotional effort to live a ‘normal’ existence and is truly the most demeaning and frightening experience I have had, with a feeling of wretchedness I have not felt before.

This new place is full of hidden and impending madness, full of people already whispering behind closed doors away from my ears, trying to plan for my demise and how I and they will cope. They provide words of comfort and gentle pats on my back, meaning well but never realising it usually makes me feel as like a leper, as if I am to be pitied. They are the ones who will eventually have the challenges of coping, as I will be lost in a world of inhibition and supposed joyfulness, locked out of the reality of the world and its occupants. And so, I keep asking myself am I to be the lucky one in this strange place called dementia. Perhaps so.”

Dr Jennifer Bute writes: “Dementia as a Gift”

We are privileged this week for our weekly blog series to have Dr Jennifer Bute, a member of the Circle of Friends in Dementia Alliance International agree to write and share this story of her own experience of living well with dementia.  Not everyone sees dementia as a gift, but it is wonderful when we can see the positives, and the gifts is can provide, alongside the negatives and difficulties it most definitely presents. Thank you Jennifer.

OLYMPUS DIGITAL CAMERA“When I was working in Africa I was given this pot by a grateful patient and I sent it back to the UK by post…. how daft can you be? And that was before my diagnosis of dementia! When it arrived it was in pieces and it was suggested it should be quietly ‘put away’ in the bin.  However I loved doing jigsaws and so with my obstinate nature I put it together again and I think it is more beautiful now than it was before. A gift that is now far more precious than if it had not been broken.

In the same way I think that living with dementia has enriched my life. I am so grateful for now being able to understand dementia from the ‘inside’ , so different to what I learnt when my father had dementia or when working as a Doctor. I remember the difference it made to patients when suffering a stroke changed from passive waiting to active intervention with amazing results and I think we need to facilitate the same for dementia!

I loved evidence based medicine and was passionate about inspiring others to have ‘Best Practice’. So now I am passionate about ‘Best Practice for Dementia and believe we can improve things and definitely slow down or even reverse some of the deterioration. I love to encourage others to be positive about what we cannot ‘undo’ but
we can certainly rebuild our lives. Even if we have ‘damaged’ brains, we are still of immense worth and value and I have no intention of being ‘put away’ !

I have the privilege of living in a dementia friendly village and have got to know others who also walk this path. I am always learning from them, listening to their stories and finding what helps to enable them to remain as independent as possible rather than just let them give up, thinking nothing can be done. It might take some effort but it is worth it.

I am so grateful to have opportunities to get to know others nationally and also internationally who are living with dementia who also encourage me and enrich my life. As I get to know these people I see how beautiful they are because the ‘damage’ has brought out such potential to change things for the better. Together we seek to repair
societies attitudes to us by showing that we are still real people with something to say. We can also encourage professionals to listen to those of us living with dementia, who assume they know more about it than we do.

Everytime I look at my clay pot I am grateful for what happened to it, in the same way I am grateful that I have dementia and can now use my medical training and my past professional standing for something so worthwhile.”

Image 9Author: Dr K Jennifer Bute FRCGP Copyright 2014

The following Vimeo recording is Jennifer describing “What dementia is to me”.

http://vimeo.com/40513833

How would you feel if you encountered this? by Dena Dotson

This weeks blog was written by Dena Dotson, one of our founders and an inaugural Board member of Dementia Alliance International. It is a deeply personal insight into what it is like for her living with younger onset dementia.  Thank you Dena for sharing this with us.

How would you feel if you encountered this?

By Dena Dotson

How would you feel if slowly but very steadily, you were having more and more trouble communicating? There is a slow persistent panic that is always with you. When people talk, they talk around you. They do this maybe because of the distant look in your eye. I know I’m not going to remember so what’s the point? How about wanting to get out of bed in the morning, but for several reasons you can’t. One of the main reasons being that there is just too much waiting for you. People, things that need to be taken care of, phone calls that should be made. But as I lie there it’s just too much, too overwhelming.

Life was going along… In one doctor visit your whole world as you knew it is over. The unending pressure of planning for the end. That’s what they throw at you. All the while you are on a rollercoaster ride with this disease. One moment you feel sort of like yourself and you think how good that feels. That feeling could last a moment, an hour, half a day or maybe a few days. In the beginning it’s just frustrating and maddening and wears you out. Then it’s a bittersweet enjoyment of that feeling. You don’t know how long it will last so you try to enjoy it while it’s there. And while this is happening you are having to adjust to the new you, and of course all the people around you that are noticing the new you. Most of the people go away, never to return. This is just a little bit of what it’s like. The financial aspect is devastating. And even that is an understatement.

I am posting this for understanding and insight into this disease, NOT for sympathy. I have too many of my friends that are living with this disease and seeing all their struggles. The amount of money spent on research into dementia is nothing in comparison to many others. The numbers are staggering of people getting dementia. It is an epidemic. Please don’t kid yourself. That is a fact. Dementia knows no limits. It can strike anyone. They don’t know the cause, there is no cure and very little to treat it. NOTHING slows the progression. They can’t even say for sure that you even have it until your dead and have an autopsy. Until then it is “probable”.

Copyright: Dena Dotson and Dementia Allpiance International
Editor: Kate Swaffer

Sharing my experience with dementia, by Maggie Weidmark

Maggie Weidmark features this week in our weekly blog series, one of our members  from Canada, who travelled to Puerto Rico to present at the 29th Alzheimer’s Disease International conference in the Living with Dementia session.  It was wonderful to meet her, and have her join forces with Dementia Alliance International. She is eloquent, and very brave in sharing her person story of living with younger onset dementihave it  and agreeing to having it featured here. Thank you Maggie.

Uploaded onto our Youtube channel, here is the recording of Maggie presenting, with her full speech notes, which she has very generously  agreed to share.

Sharing my experience with dementia

Maggie Weidmark, ADI Conference, San Juan, Puerto Rico, May 2014

My experience with dementia started four years ago, in April 2010. I was a Public Health Nursing Manager, supervising a team of about 20 nurses and support staff. I was well-liked and respected, and staff appreciated my open door policy – if you had a problem, I was willing to listen.

Behind the scenes, however, I was struggling. I was making mistakes. I gradually became overwhelmed at work, without knowing why. I was tired and depressed. I was struggling with things that had once come easily. I was forgetting things, though at the time this was less obvious to me than to puzzled co-workers. I was working longer hours than ever before, and yet still couldn’t keep up. In my mind I believed all of this was just the result of job pressures and a heavy workload, made worse by the stress of changing to a major new assignment.

One day everything changed, and my world was turned upside down.

It happened on a Friday afternoon. I was summoned to our head office, where I was called into a meeting with two of my bosses, both of them health professionals, and a rep from HR. I honestly thought “Oh-oh! I’m about to be fired!”

I was wrong. The meeting was about my weak performance, but it didn’t have the outcome I expected. I was told to see a doctor, and put on short term disability leave.

I don’t know who among my colleagues was the first to put two and two together, and put forward the idea that I might have a medical problem. I didn’t see it in myself, and neither did my husband or daughters. I’m sure it took someone with an awareness of the symptoms of dementia to see what was not at all obvious to me.

This is how my journey with dementia began. One day I was a working professional, and the next I was not. I was only 58-years-old. Work was a huge part of my life, something that I was very passionate about. I had not even thought about retirement, or what I would do when my career was over.

It took about six months, and consultations with a number of specialists before there was even a tentative diagnosis. Were my memory problems due to stress? What about my bouts with depression? My husband told the doctors that I was a workaholic, sometimes still at work until 8 or 9 at night, many hours after everyone else had gone home. Was I bi-polar? Or could I have all of these things, and a brain disease too?!

There was no quick diagnosis. The results of a SPECT scan seemed to show some shrinkage in the front of my brain, confirming a tentative diagnosis of frontotemporal dementia. A year ago a researcher at McMaster University in Hamilton, Ontario put me through about 5 hours of memory and cognitive testing, and concluded that I had Alzheimer’s disease. A second SPECT scan, about two years after the first one, appeared to show an improvement in my brain. So I’m not sure what I have, but it looks like all of that Lumosity and Mediterranean food really paid off!

The lack of a clear diagnosis is almost a mixed blessing. On the one hand, it suggests that my symptoms are not advanced enough to put me in this box, or that one. And it’s not like I’m in a race to get to the finish line, is it? On the other hand, it’s difficult not knowing exactly what’s wrong. For a long time, and sometimes even now, I find it hard to believe that I even have dementia.

In the first six months after leaving work I didn’t want anyone to know what I was facing. I didn’t have a farewell party at work, because I could not explain why I had left. I did not tell my friends. I did tell my closest family members, but insisted it had to be kept a secret. I pulled into myself, like a turtle.

My family respected my wishes, but eventually you realize that you cannot go on pretending that nothing is wrong. In an effort to cheer me up my husband Mark took me to see a comedian in a nearby city. He got us front row seats, which was nice. In the theatre lobby we ran into a couple who had both worked with Mark in the past. I found it difficult to make small talk, because I had been stripped of my identity. Who was I? What did I do?   I didn’t have any answers.

It was a big theatre with about 800 seats and a sold-out crowd, and strangely enough we found ourselves sitting right next to the couple from the lobby. I suppose the comedian was funny. He did a good Sean Connery impression. But about half way through the show my mind had wandered, and I began thinking about my problems. Without realizing it, I let out a long sigh. “Did somebody just groan?” the comedian said to the entire theatre – as he looked in my direction with a wounded look on his face. Mark came to my defence by deflecting attention away from me – he smiled and shrugged, and pointed to his left at the other couple.

I learned two things that night. One – it’s hard to keep secrets. And two – never sit in the front row.

I did have lots of practice telling my story to doctors and nurses, and it must have been on one of those visits that I either picked up or was handed a brochure for the Alzheimer Society of Guelph-Wellington. The brochure described the services of the society, which included one-to-one support, and support groups for those in the early stage of dementia, for partners-in-care, and for friends and family.

I called the phone number in the brochure, and a lovely woman named Kit came to my home. We sat at the table in our dining room and talked about my experiences. The brochure had said in big block letters, YOU ARE NOT ALONE. And it was true.

Kit brought with her a letter that was signed by seven people. I’d like to read the letter to you now.

“Hello.”

“We are a group of people living with memory loss. We come together twice a month to talk about what this means in our lives. These meetings are only open to people who are experiencing symptoms caused by diseases such as Alzheimer’s. We invite you to join us.

“Talking about our feelings is helpful. Also, information is available. We learn ways we can make days easier for ourselves and our families.

“Here are some exact quotes from discussions we’ve had about why this group has helped us so much:

  • The group is a source of humour.
  • It is a comfortable place to talk about the memory changes.
  • We can bring out our feelings without embarrassment.
  • It is relaxing.
  • Someone new may feel withdrawn but always ends up laughing and being a part of the group.
  • It is a great release.
  • We share a common predicament and learn from one another.
  • We are grateful that this group exists for us.

The letter went on to say “We hope that you will join us soon. Call our facilitator, Kit Papoff, and she will let you know when and where to meet. Looking forward to seeing you.”

The letter was signed by Gordon, Eric, Beverley, Moe, Wim, Carol and Jennifer, members of a support group nicknamed “The Reminders”. It was for people in the early stages of dementia. People like me.

I joined the group in December of 2010. Our group meets two times per month, every other week, for one and a half hours. The meetings are held in Guelph, which is a city about 100 kilometres west of Toronto.  I live in a small town about 20 minutes from Guelph, but I still have the privilege of having a driver’s license, and so I am able to get myself there and home again.

In the last three years I’ve met dozens of people with different types of dementia, facing a variety of challenges in everyday life. In a sense, my door was now open to a new group of colleagues, peers who were going through the same thing as me.

Sharing our stories through twice monthly meetings has helped me to accept my diagnosis, to gradually gain confidence in myself, to learn, and even be joyful! I made new friends.

I look forward to the support, education, social time and the empowerment that I have gained. We talk about the things that are going on in our lives, the happy moments, and the challenges. Although we are all persons with early onset dementia, we come from different walks of life, are different ages, and are at different places in the journey. Some people have been newly diagnosed, and are still in a state of shock, like I was. Others have been coping with dementia for years. We also benefit greatly from our group facilitator, an employee of the Alzheimer’s Society of Waterloo-Wellington who brings expert knowledge and counselling skills. We talk about research, and discuss recent articles or books about memory loss.

There is some continuity, but no group like this is static. New members are warmly welcomed. Some of our regulars have switched to other programs, but we still see each other at Alzheimer Society social functions. One man, Eric, sadly passed away. Our facilitator, Kit, has retired – I was so sad to see her go! She was wonderful. There is one man, a former geography professor who plays timpani in two orchestras – he’s been attending a dementia support group for 15 years!

My participation in “The Reminders” has transformed my entire way of thinking about dementia. I went from being sad, depressed, angry and embarrassed, and became much more open and optimistic. Partly this is because I realized that an important part of living with dementia, at least for me, is to increase awareness about the disease. When I think back to that fateful day when I lost my job, I am so thankful for the understanding and compassion with which my employer handled the situation – somehow, they got it, before I did.

My participation in the Alzheimer’s Society’s support group changed my attitude, and that got me out into the community. Mark and I joined our local lawn bowling club, which is a short walk from our home. In the winter the activity shifts indoors, and we play carpet bowling at a community centre. My mother-in-law and a friend I met through lawn bowling are my pals, and we regularly take in activities at our community senior’s centre, like walking and day-trips excursions.

As I gained confidence I began to share my diagnosis with others. Many of my new friends are older than me by 10 or 20 years, but that doesn’t matter – they are active, energetic, and like to have fun. I feel that I am accepted.

A year-and-a-half ago my husband Mark and I were invited to participate in a research group developing a curriculum designed for persons with early stage dementia. We belong to what they call a “hub”, one of three across Canada that are run by the participating universities. The purpose is to give persons with dementia, and partners in care, input into what topics and content are to be covered by the project. The hub, which meets monthly, has given me another opportunity to connect with people, learn about dementia, and make a contribution that will hopefully help others. My attendance at this conference was made possible by the Murray Alzheimer Research and Education Program at the University of Waterloo, who invited me here – thank you so much Lisa.

Before I finish, let me return briefly to the subject of support groups. Last fall the meeting place of “The Reminders” was relocated to a new space that added another 10 minutes to my trip. Mindful of that fact that I will not have my driver’s license indefinitely, and also of the hazards of driving in Canadian winters, my husband Mark approached the Alzheimer’s Society and asked if a support group for persons with early onset dementia could be started in our town. They said yes! Our first meeting was two weeks ago. Aside from our facilitator, Lindsay, there was just myself and one other person – a man who was newly diagnosed. I am hoping the group will grow in numbers, as more people become aware of its existence.

For now, I am hoping to keep up with both support groups. The new one will only meet once a month until it gets established. I also want to hang in with “The Reminders” once a month.

For anyone thinking about support groups for persons with early onset dementia, I say take the plunge! Attend the closest one you can get to, or ask your local Alzheimer’s organization to consider bringing services to your community.

Thank you for listening to my story.

Copyright Maggie Weidmark

Editor: Kate Swaffer

 

Sue Stephen talks about living with PCA

Our fourth blog features one of our founding members, Sue Stephen who is also a member of the Board of Dementia Alliance International. Sue attended the recent ADI conference in Puerto Rico, and her presentation was part of a concurrent session called ‘Living with dementia’ where a number of us presented, and then answered questions as a panel. This was one session that those in the audience learned a lot from, and Sue’s presentation, brilliantly done without any notes, was informative and moving. Below is the video recording of her session, now on our YouTube Channel.

Copyright: Dementia Alliance International
Editor: Kate Swaffer