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.

http://www.youtube.com/watch?v=ogA8XqkfLrA

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