Tag Archives: Editor: Kate Swaffer

Dementia friendly… or not?

puzzle pieceMany countries are focused on becoming dementia friendly. It should be exciting times for people with dementia.

There are large numbers of people in the Associations and Organisations advocating for people with dementia and their family carers, sitting around tables, inviting guest speakers to present at events and teach others how to make their organisations and communities’ dementia friendly, and seemingly taking the notion of communities being dementia friendly very seriously.

The UK have been working on being dementia friendly via projects such as the Dementia Engagement and Empowerment Project (DEEP) for over 10 years. Australia has been actively promoting the ideal for a few years now, with the theme last month for Dementia Awareness Month being Dementia Friendly Communities, a theme they will focus on again next year.

In 2014, we even saw the World Dementia Council set up, not specifically talking about dementia friendly communties, but focused on dementia now and into the future, but without a person with dementia in the committee.

As suggested, it should be exciting times for people with dementia, but without including people with dementia, it simply continues to stigmatize and isolate us. It is incredible that everyone would be outraged if this was done to Indigenous, gay or disabled groups, yet very few see it as wrong that people with dementia continue to be excluded.

In the work being done towards dementia friendly communities, there are two pieces of the puzzle that are often still missing;

  1. The internal Dementia-friendly Audit that needs to be done, inside the very organisations advocating for dementia friendly, and
  2. The full inclusion of people with dementia.

To date, there are few if any truly dementia friendly Alzheimer’s Associations or Organisations. They generally are not fully inclusive of people with dementia, rarely have them on their Boards, and the consumer committees that have been set up to provide a consumer voice, are predominantly made up of carers, not people with dementia.

It is however, thrilling to announce that Alzheimer’s Australia has listened, and more importantly, taken action, and is now employing a person with dementia [Kate Swaffer] to work with them on their dementia friendly initiatives. No longer about us, without us. Let us hope this sets the trend for other countries.

Things are changing, as the Scottish, EuropeanAustralian, Irish and now the Japan Dementia Working Groups, made up entirely of people with dementia have set the trend. The Scottish group was ground breaking, and set the example of what could, and should be done. But not having people with dementia, at the table, at every single meeting about them, about what their needs are, and being part of all of the conversations, cannot be dementia friendly.

There is no way any country or community would be holding meetings or running events, about what an Indigenous, gay or disabled friendly community is, without a lot of those people being involved and present.

Of course people with dementia rely on the support and services these organisations can provide, but not to their detriment. Often we are ‘used’ in a patronising and tokenistic way, in order to say we have been included.

One person giving a 10 minute presentation, cannot possibly represent the 44,000,000 peoiple living with dementia around the world.

We are used to help with fund-raising, reported as ‘sufferers’ and ‘victims’ in order to elicit sympathy and support through fundraising for research. Research still mostly goes into finding a cure; even though some researchers openly and publicly admit they are further away from a cure than they were 10 years ago!

Change is in the air and as the voices of people with dementia become stronger and louder, and more unified, through the work of these consumer Dementia WorkingGroups and Dementia Alliance International we will spread our wings and use our voices to ensure our basic human rights are being met. Dementia friendly must include us, and the organisations supporting us, must weed their own back yards through internal audits (not self audits, but audits done by people with dementia) before they start advocating and preaching to others what dementia friendly means.

Without including people with dementia in the projects and discussions about dementia friendly communities, no organisation or communioty can make the claim to being dementia friendly.

Editor: Kate Swaffer
Copyright: Dementia Alliance International & Kate Swaffer  © 2014

The World Dementia Council

This week the Executive members of our Board have held an Extraordinary meeting in order to respond to the World Dementia Council regarding their lack of inclusion of people with dementia.

They met this week, and I sincerely hope Dr Acosta who offered to represent our views was able to present our statement, and that we receive a response from them.

It is only mid week, but this is so important, I decided to publish a DAI blog about it today. It was also blogged about yesterday here.

Disappointingly, “About us without us” continues to be the norm, rather than the exception.

Dr Gillings

 

 

 

 

Furthermore, this statement by Dr Gillings is seriously misinformed; people with dementia all over the world, as Dementia Alliance International and other groups of ppeople with dementia are highlightin, are and can speak up and advocate and activate for themselves.

Editors note: Until we receive a response, I am now witholding the statement we wrote to the World Dementia Council, originally published in this blog.

 

 

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

Master Class 2: My Conversation with My Doctor

It has been an extraordinarily busy time so far during Dementia Awareness Month 2014, and the second Master Class is now available to view here and on YouTube. Congratulations to DAI members, John Sandblom, Jennifer Bute and Dave Kramer for sharing your experience and wisdom with our members and in fact, the world! Eventually!

Published on our YouTube channel September 11, 2014

In this webinar, our panel shared their experiences of sitting on both sides of the table – physician and patient — and talked about how to make the most of your visit to your doctor, how to get the information you need, how to understand what the physician is telling you, and how to advocate for yourself.

You can register here for Master Class 3 on September 17: Advocacy and Speaking Out. Click here for class times, class description, and to register.

MEDICAL DISCLAIMER: Information and other content included on this Site or in this video (Master Class 2: My Conversation with My Doctor) is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a professional health care provider. This site and video does not provide medical advice. You may not use or rely on any information contained on the Site or in the Video for diagnosing a health or medical problem or disease. You should always consult a professional health care provider regarding any health or medical condition, prevention, or treatment. Do not delay or disregard seeking professional medical advice on account of something you have read on www.dementiaallianceinternational.org or viewed or heard in a video on this Dementia Alliance International YouTube channel.

 

DAI in Dementia Awareness Month 2014

DAI Master Class logoSeptember is World Dementia Awareness Month and because we know our members have a lot to contribute to the learning of dementia, during September DAI is holding a number of Master Classes and other events.

Master Classes: learning to live well with dementia

During September 2014, DAI is offering the following Master Classes for people living with dementia, taught by people with dementia. The focus of the Master Classes is on learning to live well with dementia.

Master Classes are offered over the Internet using video conferencing, and can be attended from your home, office, or can be set up and shown to groups. They are free to attend (ticket purchases by donations are welcome):

The classes and dates are as follows. For class times, descriptions and to register, click on the link provided after the class title. Australians, add a day to the following dates.

Café le Brain

  • September 16: Guest host is Teresa Zawicki

Webinar:

TOPIC: Dispelling the Myths of Dementia

Everyone knows about dementia, but few understand it. In this webinar we will talk about the popular myths of dementia, the research into dementia as it stands now regarding causes and prevention, the different types of dementia, and about the positive things that are happening regarding living well with dementia. Participants will be able to ask questions of the panel, which will be comprised entirely of people with dementia.

TWO TIMES FOR THIS WEBINAR:

  •  Northern Hemisphere: Tuesday, September 23 – 10 am, PT, 12 noon CT, 1 pm ET, 6 pm UK
  • Southern Hemisphere: Friday, 26 September – 11am (Adelaide time) – to be confirmed.

Here is a summary of the programs and events being offered during Dementia Awareness Mnth 2014 by DAI:

  • Master Classes: Four weekly classes on living well with dementia – for people with dementia, taught by people with dementia
  • A Meeting of the Minds webinar: Tuesday, September 23 – Dispelling the Myths of Dementia – times to be announced
  • Café Le Brain Memory Café: Tuesday, September 16 – Guest host is Teresa Zawicki

To learn more about these events and to register for the Master Classes, which start on Wednesday, September 3, please go to: http://www.dementiaallianceinternational.org/events/

 

Dementia in the media

Source: Google Images
Source: Google Images

As the editor of an international advocacy and support group, of by and for people with dementia, I read or am referred to many articles in the media about dementia. Most of them require a comment from people living with dementia, in order to either re-claim our human rights, to request the same respect offered to everyone else in the community, or to complain about either the misconceptions and myths the articles portray, due to the ignorance of those without dementia, or the biases and prejudices of a few.

The media feels like a an ugly place to be these days, as we are regularly being referred to as sufferers, victims, demented, not all there, fading away, or in this disgraceful instance, we have dementia as a form of punishment for our sins. Read this article, by a radical and obviously extremely prejudiced woman named Suzanne Atanus, a Republican candidate for U.S. House of Representatives in Illinois, who claims autism and dementia are God’s punishment for abortion and LGBT rights; GOP candidate claims autism and dementia are God’s punishment. It is outrageous!

A few months ago a journalist called Rose George balked at being told I found the use of the term sufferer offensive; she used it in the title of an article she wrote for The Guardian, also partly about her personal story of supporting her own mother who had dementia. After a number of tweets about being offended by the public use of this term, she ultimately tweeted back that I had no right to ask for it to not be used. Once I referred her to the International Dementia Language Guidelines, she would not engage with me.  Some people with dementia do not mind being referred to as sufferers, but many of us find it not only offensive, but de-meaning, de-valuing and disrespectful, and we do have a right to for it not to be used publicly.

We believe that if it is in the public domain, and a group of people find a word, words or terms offensive, then we do have the right to ask others to stop using it, in the same way we – and they – would NEVER refer to someone with an intellectual or physical disability as a retard or retarded any more. Not because they are not retarded, as technically they are, but because this group find its offensive. I often call myself retarded to make a point, and people are horrified I would refer to myself that way, and often, these same people are often aggressive in their right to offend me and other people living with dementia by calling us demented or sufferers.

Joseph Curl wrote on Sunday, July 20, 2014, CURL: The politics of death and dying, for The Washington Times. It is obvious he is sharing his personal story and very raw emotions of his mother’s dementia, but it portrayed people living with dementia as ALL deficient, all ‘suffering’, all incapable of living any sort of a good life, and all completely unable to make decisions for themselves. In no way did it allude to the millions of people living well with dementia, who are still positive and leadinging meaningful and engaged lives, many of them in the community, still achieveing remarkable things.

This author’s personal perspectives and wording were then carried over to another article in the examiner.com Dementia: Drudge Report editor foresees death politics on the horizon that compounded the negatives, the errors, the stereotype that then increased the potential for prolonged stigma. Of course, if a journalist is expressing personal opinions, they or the editor may not think it relevant to consider the international dementia language guidelines. I still say, if they would not use the word retarded, they should also not use the word sufferer, in the public domain.

I have written extensively a number of times about language and dementia, including saying this; “Does ‘I am suffering from… dementia, arthritis, cancer, MS etc’ sound more negative and less empowering than ‘I am diagnosed with…’? Whilst the term suffering may technically be ‘correct’, I cannot see how anyone could not see it is not negative and disempowering.”

In  article The cheating language of equality, he wrote when referring to me, “Like so many others she [Kate] believes that you can change the world by changing language, a fallacy that is everywhere hobbling radical movements. If accuracy is sacrificed, they say, if basic descriptions such as “mentally ill” and “sufferer” are forbidden, if readers and listeners get lost and woolliness is held up as a model to writers and speakers, so be it. Waffle will lead us to a better future.”  Waffle may not lead us to a better future, but I and we have the right to say if something offends us.

In another blog on Language, dementia and respect I referred to an MP in Adelaide, Kelly Vincent, who campains extensively in the disAbility sector, and is the political leader of Dignity4Disability. She says; “The way we ‘label’ or talk about clients can say a lot about what we think about them” . The C-word campaign is about person centred care and respectful communication, and about the rights of people in a specific sectors – e.g. disAbility, aged care, or dementia, and for them to have a say about what is appropriate language. Dignity4Disability’s C-Word Campaign has these principles as a philosophy. These principles apply equally to people with dementia.

We [people with dementia] are not, “not all there”, we are still here, and we still have feelings and opinions and rights. Some of us may suffer from dementia or other diseases some of the time, but that does not necessarily make us sufferers.

Sadly, I could have referred to literally hundreds of articles that devalue and disrespect us; this is where continued advocacy and communications from people with dementia becomes really important. We must keep sending out our messages, subtle or not so subtle, depending on the receptiveness of the people, person or organisation we are trying to educate.  We must be alert for the opportunities to correct, to educate, and to change perspectives.  This may not be done overnight, but we must keep trying to improve the awareness and reality of dementia, including the good, not just the bad, and to stand up for our basic rights.

The media spoon feeds the public, and has a responsibility to feed it the truth, with respect for all of those it portrays.

This includes people with dementia.

If people are publishing anything, or speaking in a public forum, it is imperative they refer to the international dementia language guidelines, which will be added to our site in the near future.

For now, I have added Alzheimer’s Disease International’s guidelines for the preferred terms for their conference speakers, next to the terms they advise submitters not to use when referring to a person with dementia or their family/friend support person:

Dementia/a form or type of dementia/symptoms of dementia – NOT – Dementing illness, Demented, Affliction, Senile dementia, Senility

Younger onset dementia – NOT – Early onset dementia when referring to someone under the age of 65

Person living with dementia, diagnosed with dementia – NOT – Sufferer, Suffering, Sufferers, Demented sufferers, Vacant dement, Victim, Demented person, Patient, Subject, Case

Family member/s or person supporting someone living with dementia, Wife/husband, child, friend – SUGGESTED – Care partner

Disabling, challenging, life changing, stressful – NOT – Hopeless, Unbearable, Impossible, Tragic, Devastating, Painful, Distressing, Fading away, Empty shell, Not all there, Disappearing, Stealing them away (they are always still there), The longest goodbye

Impact/effect of supporting someone with dementia – NOT – Carer burden, Burden of caring

BPSD, changed behaviour, challenging or difficult communication – NOT – aggressive, wanderer, poor feeder, wetter or incontinent, obstructive, non–communicator, attention-seekers, non-communicators, obstructive, etc.

Editor: Kate Swaffer
Copyright: Dementia Alliance International 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

Setting up Dementia Alliance International: A roller-coaster-ride!

see the personIt is time once again for the DAI weekly blog, and as I haven’t received any stories from members, old or new, to share with you, I thought as the Editor I’d better come up with something! Needless to say, my own blog was very short today, and I am also still far behind in my personal writing and overdue uni work, but as I made this committment to DAI, I wanted to follow through.

So onwards and upwards through the fog towards the stars and clouds…

We must all rise above dementia in our own ways, and doing this is one thing that helps me. My goal and passion to give an authentic voice to people with dementia, and to support and advocate not only for them, but to teach that it is possible, keeps me focused and reasonably positive most of the time too.

The challenges of setting up a global, online support and advocacy group, of by and for people with dementia have been extraordinarily rewarding, and also very stressful at times. Personally the last seven months – yes we have been going seven months as of the end of July – have brought me personal joy, but also tears and frustration.

Setting up DAI has been what I can only describe as one heck of a “roller-coaster-ride”.

We are a group of people living with this or that type of dementia. Due to our dementia, each of us have varying types and levels of disabilities caused by the symptoms of dementia. They are not always compatible with being productive, nor with being focused, and on some days, prevent us from doing anything at all.

On top of that, our disabilities are always changing, or getting worse, and so we can feel like we are constantly at sea on a small raft, being thrust into whatever the weather decides to send us.

Sometimes, a diagnosis is changed, or taken away, and the emotional roller coaster that sends the person on is tumultous. It is hard enough being told you have this or that type of dementia, but for those people where it keeps changing, or is ‘taken away’, it takes its toll.

Mr Dementia has a way of getting in the way of living well and in  being productive, and without a lot of focus and support, it is challenging to achieve the activites we embark on or dream of, and DAI wants to break that mould, and teach others with dementia that with support and enablement, and the breaking down of stigma and discrimination we can all live better lives.

Importantly, we do not have to act as if we are in the end stage upon diagnosis, nor accept the Prescribed Disngagement dished out to us by our health care professionals. We can and should continue to live our pre-diagnosis lives for as long as possible, in the same way we would if diagnosed with another terminal illness.

DAI has had to cope with resignations of Board members for health or personal reasons, and this is always sad, but also very unsettling as it makes us question what we are doing. We also know that DASNI was the first group in the world of by and for people with dementia, but as it has not remained exclusive to people with dementia, the reason why a number of us felt DAI was still needed. In no way did we mean to offend any of the people who set up DASNI, but rather to complement what they had done, and build on that work.

We have also had to contend with the angst of a few others feeling as if DAI was their original idea, and feeling upset they were not one of the original co-founders.  I’m not sure whose idea it was first, but know I have talked about a group like it with other people with dementia for over four years, and the original DASNI members obviously thought about it long before then. In some ways, this has been a stumbling block as it may have held back our membership.

There is always competition for whose idea it was first, and now with the internet being so accessable, it is easy for other groups to emerge; and other groups have emerged since we started, causing us to have to rethink our position, and wonder if they are in competition with us, or simply providing another service.  But question it we do, and it brings with it various negative and positive emotions, and takes time away from more productive activites. Life is like that, so it stands to reason setting up a new group is going to have its challenges!

Since 1 January 2014, and without any funding, Dementia Alliance International has achieved a lot, and I thought it was a good time to remind ourselves and our members (people with dementia), as well as our supporters, on what we have already achieved.

Firstly, I would like to achkowledge we have a very committed volunteer and friend, without dementia, Laura Bowley, who has worked hard to support our efforts, and enable us; she helps to run meetings, often writes up the minutes, co-hosts the Webinars, is involved in the Memory Cafe and a number of other things as required. Thank you Laura. There is no way we could have done it without your support and hard work.

  1. We have a website, although it is still in progress with updates and work to improve it, run by members.
  2. We set up our Vision, Values, Missions and Core Beliefs for DAI; of course this may change over time, but we worked hard on these things, and feel they represent what other people with dementia woud also want.
  3. Virtual support groups.
  4. Facebook page.
  5. Twitter account.
  6. YouTube channel.
  7. We are building on the Webinars at A Meeting of The Minds.
  8. We now have a blog, this one being the 12th of our weekly series.
  9. We have a quarterly newsletter:The Advocate.
  10. Membership is in many countries now, and is increasing steadily, and will remain FREE. We need to build on membership in other countries, so they can set up and support new local Alliances for people with dementia in their own countries or regions.
  11. An active Board, including a few new members who have just joined.
  12. A “Circle of Friends” – members (just a reminder, they are all people with dementia) who have started meeting to work on projects, e.g. educational resources and material.
  13. We raised over $6000 in less than five months to sponsor five people to attend ADI2014 in Puerto Rico.
  14. These funds also allowed us to purchase a banner and purchase t-shirts for members and supportes, to assist with marketing and fund raising.
  15. We set up and ran a professional stand promoting Dementia Alliance International at ADI2014; this took a huge commitment in time and energy to set up, and to run each day of the conference, but allowed us to highlight not only the abilities of people with dementia, but to network into other countries and organisations.
  16. Our By Laws are almost complete.
  17. Our Strategic Plan is in progress.
  18. Our 501c status as a not for profit organisation based in the USA is in the final stages, which will allow us to focus on fundraising. This is mostly thanks to Richard Taylor PhD one of our co-founders and an original Board member.
  19. A small group of “DAI Associates” – people without dementia, who have committed to volunteering some of their time and professional expertise to help develop the activities of the group, or to support and enable people with dementia who feel they need assistance for their disabilities. This is not so that they can promote themselves or highlight commitment to people with dementia, but instead to provide support for, and enable us; we need to build on this group in other countries, so they can support new local Alliances of by and for people with dementia.

Looking ahead, we are currently collaborating with others to set upsome very exciting projects, and as we develop our skill sets, commitment to the fact we can still function, albeit differently to the way we did before being diagnosed with dementia. We will be adding resources and finding  funding, and will achieve our current goals and beyond.

I for one don’t want to go it alone any more. Living with dementia is already a desperately lonely experience, and trying to achieve change on my own is nowhere as much fun.  Perhaps it is not as productive either. Even though some days I feel frustrated, as if we are not achieving very much, or not quickly enough, writing this over the last few days has made me realise just how much we have achieved, and what we have in the pipeline for the future.

It is very exciting, and I ask you continue supporting us, either through membership, referrals, or finding people who can offer us professional support or funding.

It is no longer, “If it is to be it is up to me (or you)” but rather “what we can’t do alone, we can do together”.

 

Editor: Kate Swaffer
Copyright: Dementia Alliance International 2014

 

Alzheimer’s from the inside out, by Richard Taylor PhD

This is third of our weekly blog series. This week we are highlighting another of the presentations made at the 29th Alzheimer’s Disease International conference in Puerto Rico, this time by Richard Taylor, one of our Board members and a co-founder of DAI. It was sheer brilliance, and was the only oral presentation to receive a standing ovation at the whole conference. One highly respected researcher who has attended 27 of the 29 conferences had never heard Richard speak, even though he has usually presented at least three times for the last five years, and was not only surprised, but shocked by how good it was. I too was shocked, by the fact this person had never bothered to come and listen to one of the sessions by people with dementia before, especially someone as noteable as Richard, and who has been involved with ADI in a very positive way. I suspect they have much more to learn than we do, in their work towards making the lives of people with dementia better…

Here is the video recording of Richard’s presentation, now on our YouTube channel.

Below is the basic script from Richards presentation.

“What I’ve learned.

Hello

Thanks

Less about what I’ve learned and more about out what I have experienced.

We all experience life differently………..We all interpret our experiences differently

But we are similar in both our experiences and interpretations. Where we are different is in what we do with these.

Translating life and integrating it into living

I am at a transitional tipping point.

1. There is such a feeling as kindred spirits among people living with dementia

2. There is such things as universal stigmas engrained in our thoughts and feelings/ but not necessarily in our experiences.

3. These stigmas defy evidence, reasoning and even experience

4. They become the bookends, the dark glasses, the perceptual filters of our living, of our caregivers, of other professionals who interact with us.

5. These stigmas limit, prescribe, and describe how we think, feel and act with and towards each other.

6. Stigmas should be addressed head on.

7. We all must stop perpetuating them, reminding others of them, using them to meet our own needs.

8. The language, the symbols, the words we use are contaminated, intentionally and unintentionally redefined to meet our own needs.

Cure/Alzheimer’s vs. dementia and all the other forms/sufferer/patient/person

9. This must stop.

10. We shouldn’t/can’t justify the means used by the well-intended means (which knowingly harm others, make their lives more difficult, and yes I’m talking about people living with dementia who are victimized/used/abused by these means to meet good/I would say any ends.

11. The use of focus group results to design fund raising appeals must stop, and must stop now.

12. Where are the focus group results which come from groups of people living with dementia, rather those in authority, those most likely to donate, and those…?

13. If you meet/know one person with dementia you only know one person worth of dementia.

14. The only real experts concerning what is like to live with dementia of this or that sort are those who are actually living with the symptoms of dementia of this or that sort.

15 The strategy of we will cross those bridges when we come to them is a counterproductive strategy.

16. Like many of the meds we now take, its side effects can be worse than the symptoms, it masks the real problems, it solves nothing (just delays and complicate it). And generally increases anxiety, not reduces it.

17. Now (a month after diagnosis) is a time to have a meeting of the family minds and hearts.

18. The burden of change is more on others than on persons living with dementia.

19. Our needs do not lessen, nor are they reduced in number as the number and severity of our symptoms increase.

20. We were, are, and will be up to about two minutes after we draw our last breath whole human beings.

21. We need enablers, not disablers. Sometimes we need reablers.

22. We need support to stay into today.

23. Stay in the past is not the highest priority for any human being

24. Reminiscence is over rater, over used, and over depended upon by carers to assure themselves that we are still here.

25. Becoming engaged, staying involved in a purpose, in purposeful activities is a key to fullfilling living out our lives as happy, fulfilled individuals.”

Thank you Richard.

Editor: Kate Swaffer

Copyright Dementia Alliance International