This page focuses on dementia, as do most of my daily blogs, so take a look through them if you want more ideas and stories about dementia. The latest figures for people diagnosed with dementia in Australia is more than 413,000 people, and over 26,000 people under the age of 65. The WHO (2015) estimates someone is being diagnosed with dementia every 3.2 seconds worldwide, and there are more than 50 million people living with dementia now (2017). These statistics are sobering, and indicate massive change is needed in terms of funding and provision of care. I see it as imperative we increase funding not just for a cure, but to help us live more positively with the disAbilities imposed on us by dementia, and to remain engaged in lives that continue to be meaningful and active.
What is dementia?
Swaffer, K & Low, LF. (2016). “Diagnosed with Alzheimer’s or another dementia: A practical guide for what’s next for people with dementia, their families and care partners”, New Holland Publishers: Sydney, p 17.
In simple terms, dementia is the gradual deterioration of functioning, such as thinking, concentration, memory, and judgment, which affects a person’s ability to perform normal daily activities. It is a terminal illness. There are approximately 100 types and causes of dementia; Alzheimer’s disease is one type of dementia, and is the most common type making up between 50-70% of diagnoses of dementia. Dementia occurs primarily in people who are over the age of 65, or in those with an injury or disease that affects brain function. While dementia is most commonly seen in the elderly, it is not a normal consequence of the aging process. Dementia over the age of 65 is known as ‘Older onset dementia’, and under the age of 65 as ‘Younger onset dementia’. All age groups go through the stage of early onset dementia. Alzheimer’s is currently not just incurable but untreatable. The available drugs can alleviate some of the symptoms, but they don’t cure the disease. There is currently no treatment for the other types of dementia.
This is what it felt like when I was first diagnosed: Dementia My Story
Dementia Alliance International An international organisation of by and for people with dementia
Dementia: My Story What it felt like not long after diagnosis
Fight Dementia Campaign Rally Speech My first rally ever!
What is that? (Τι είναι αυτό;) A MUST watch short movie
If we could see inside other’s hearts: Life in 4 mins A profound look at life in 4 minutes… a ‘Must watch’!
Commitment to Care Adelaide Central Health video
I am one Beautiful lyrics and message in this song, re-igniting humanity
Richard Taylor An amazing man and personal friend living with dementia, and advocate for people with dementia
I CAN I WILL An ‘Ideas Library’ for PWD, their families, Professionals, Associations and others
Moving your soul, a different way to be with Alzheimer´s A wonderful tribute of loved ones by carers
Dementia Challengers A site for carers
Dementia and Elderly Care News Loads of excellent research articles on this site
Here is the link to a wonderful story written by someone caring for their father with dementia. http://www.bodyandsoul.com.au/health+healing/news+features/my+dads+dementia+changed+my+life,18069
Various interviews about my ride on the dementia train
Radio NZ interview:
Alzheimer’s New Zealand Future Faces of Dementia Conference Interview:
Posted 31 May 2012
A few ideas to think about upon a diagnosis of dementia.
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.
Recently I nicknamed my husband BUB, or Back up Brain and we find this terminology far easier to live with than carer. If you think about how you use a back-up on your computer it works the same way. You don’t ask the back-up to do the tasks that the computer does, you only use it when the computer crashes, freezes or needs a reboot. We think of a back up brain as being the same as the hard drive in a computer. He said recently, it empowers him to be by my side and with me, rather than to ‘care’ for me, a very subtle but significant difference. The Scottish Dementia Working Group have a slogan, nothing about me without me. Speak up for what you as a person with dementia wants; don’t let others make decisions for you.
And so it is with my dear husband, who helps me live more fully with the symptoms of dementia. We have learned together to live with dementia, in ways that don’t inhibit or restrict me as a person, and in ways that help to keep our love alive, way above the daily changes and traumas that can also be the living with dementia. He does not take away my dignity and power to do things for myself, but instead assists me from the sidelines, there when I ask for help, or offering help if he sees me stumbling. Offering is also a key word here, as he does not enforce his opinions or help, but rather acts as my back up brain, my hard drive, the one that is fading, but with effort, and sometimes assistance, can still function well. It also empowers me to feel less of a failure, and less guilty about what is happening (failure, only in the sense of having to accept there are so many things I simply cannot do alone anymore). I am the only one on this [my] train [person with dementia] who knows what is going on in my mind. Your imagination is far worse than anything you can actually tell, and your interpretation of what you think is best for me is simply that – your interpretation.
I read a lot and come across what was happening [to me] through text books and online articles and blogs. It is almost exclusively the words of those with dementia that really ring true for me. I’m sure it is the same for the people who love and live with us.
Most of the time at least for now, I hardly need my back-up brain, but it is supportive to know it is there. Although it requires an enormous amount of effort on my part to function, I am happier doing this rather than relinquishing all of my responsibilities. Of course, many people discount this effort, thinking that there is nothing wrong with me; they don’t see my endless notes and other coping mechanisms that I have developed to maintain my dignity. It would seem to me, if you want people to succumb to dementia quicker than they normally would you should think for us, instead of letting us think for ourselves. If you want our brain to stop working then help us to stop using it. So back to BUB and how it helps us. Peter says he find it stops him trying to take over, to know when to act and how. It sounds easy, it is not, but it does set some guidelines in how to behave and handle situations.
Many talk about denial like it is a bad thing but at times we’ve found that some of the time it is a great place to be… you have to face up to the reality, BUT you can only take so much at a time, and you need somewhere to ‘hide’ for a while, for a break. It is a ‘marathon’, but you do need to rest – especially mentally – but also physically – perhaps the need for respite eventually.
As a couple, we need to plan, without my husband trying to control my life too much – It is our struggle as a couple, but it is also my struggle, and my husband is there to support and advocate when I can’t, not to live my life for me. Dementia has changed the sense of ‘us’, in that he is now probably more important to me, sort of like being my lifeline. We don’t know where we are heading but we are going there together.
We use humour, and try to laugh at the ‘symptoms’ of dementia as they come into our lives. We find our attitude is the one very small thing that can make the biggest difference. If you are not happy, then you need to change something.
Groucho Marx once said; I don’t care to belong to a club that accepts people like me as members.
I feel that way about dementia, but as I have no choice, the best way I can survive and live my life is to laugh as much as possible, to ignore the negatives as much as possible, and try to see the funny side of things.
“Dementia care is caring for people who often do not know they need care, and don’t want to be in care; no wonder they may become angry and upset!” KS, 2008.
The non pharmacological and positive psychosocial interventions I use for managing the symptoms of dementia:
- Studying (any learning would do)
- Transcendental Meditation
- Self Hypnosis (for managing stress and pain)
- Prayer (or your own version of spirituality)
- Creative writing and poetry as therapy
- Blogging or a daily journal that family and friends can read and contribute to
- Belief that I can heal myself/make new pathways in my brain
- Music therapy
- PERMA Principles of living a positive life (read Flourish)
And a few Books worth reading:
- Doidge, N, 2012, The Brain That Changes Itself, Scribe Publications.
- Lipton, B, 2005, The Biology of Belief Unleashing the Power of Consciousness, Matter and Miracles, Hay House Inc.
- Seligman, M, 2011, Flourish: A Visionary New Understanding of Happiness and Well-being, Free Press.
- Walker, R, 2012, The Five Stages of Health, Transworld Publishers (Division of Random House Australia).
My message to anyone who is experiencing the symptoms of dementia, or has been diagnosed with dementia;
- Get diagnosed as soon as possible, especially if you are younger
- Accept the diagnosis
- Accept the symptoms as disAbilities
- Get your wills, power of attorney and guardianship and medical directives done immediately, while you still have legal capacity
- Develop strategies to manage the disabilities, just as you would if you lost your eyesight or legs
- Get a good team around you of doctors, service providers, family and friends
- Contact your local Alzheimer’s office
- Work on living a positive, engaged and meaningful life
- Perhaps even choose a suitable respite and residential facility, just in case you do end up needing it
- Make your own decisions, for your own future, while you still can
We live until we die and so as a person living with a diagnosis of dementia, it is important to focus on the LIVING.
Posted 26 October 2011
Person Centred Dementia Care
There are a number of things I believe we need for quality Person Centred Care. Firstly, always call us by our name, never dearie or love. Always ask our opinion about what we want to do, how we want to do it, or if we need you to assist, and how is best for you to do this. Never assume we’re not capable of thinking! We may not talk, but we will always feel.
Seek to understand what is happening to us – not from a clinical perspective, but from our personal inner experience. Get to the heart of the matter with us. Ask the tough personal questions. Start with this before getting to the ‘fix-it’ topics items on your agendas. My service co-coordinator and social worker from Domiciliary Care was the first service provider who did this for my husband and I, and it was such a relief to finally talk about the personal issues, the loss and grief and the trepidation we were feeling about my and our future.
Please define us by who we still are… mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties, rather than by the symptoms of our disease – forgetful, confused, aggressive, angry, odd behaviour, absconders, mute or refusing to communicate. Focus on what we can do, not on what we can’t.
Don’t diminish our symptoms. For us to have received the diagnosis of dementia, we have had to have a lot of unpleasant tests, of which the results must fulfill a lot of clinical markers. If we don’t yet look or sound like we have dementia, don’t be fooled by our cover. By not believing us, or that it is not as bad as it seems to us, you will diminish us. Dementia represents the end of dreaming, a long and unforgiving one way odyssey into obscurity, clouded in a thick and unforgiving fog.
A diagnosis of dementia brings on a number of issues to be faced, so before you come into our home or our personal space, I encourage you to think about the following things, and how you might feel if you were facing them.
We face an Identity crisis – who am I – who will I become? Dementia brings a fear of the future, of decline and of death in a state of unknowing. Many of us can no longer be defined by our work, therefore we are less valued by society (and ourselves). Exclusion from many activities, brings further isolation. Also affected are our families, especially our parents and children for younger onset dementia sufferers; it brings a new level of responsibility and caring to them; for parents it does not fit the natural order of life, i.e. they are meant to decline before us. It affects our intimate relationships, our sexuality and our connectedness.
Our environment becomes vital to us: We need to know where we are – often best in our own environments with our regular routines or we may withdraw. Don’t do everything for us or we will forget how to function. Listen to us, or we may give up the struggle to speak. Limit external noises when you are working with us as we find it difficult to concentrate. Hallucinations, crowds and large groups may cause us to withdraw. Encourage regular routines.
A daily struggle of coping with both tasks and emotions: Home care is not initially helpful as very confronting. Help us develop strategies to manage the daily functions, e.g. memory cards if we’ve forgotten in what order to get dressed. Speaking, thinking, functioning more difficult – give us the time we need to accomplish things on our own, and to get our words out without interruption. Hallucinations can become our friends – we need to find ways to live with them. Accept our fixations and new behaviours as normal for the who we are becoming. Help us finds ways to manage things like our finances without taking away our dignity. Listen to us so that we feel valued. Speak to us in ways that are positive – it is how you say we remember, not your words.
Added to our daily struggle is the fact that often there is no consistency with our carers – having a new person in our home, a different stranger showering us each day if we need that type of care, is very invasive and distressing. Always ask yourself, how would you feel if a stranger was walking around your home, taking off your clothes, showering or toileting you? If you are honest, you know you would detest and reject it, perhaps even become distressed and angry, so some of the behaviour management that is imposed on people with dementia might not be needed with a regular known carer. This is an important issue for residential, respite and in-home care providers to consider and improve our care.
Fear of further decline: Facing the future; who will we become, what will define us, will we know our children at their weddings – will we even be alive for those occasions? Will we know our grandchildren? Will we see our 20th wedding anniversary?
Fear of further loss of privacy…
Shame, isolation and stigma – people with dementia put up with a lot more than their illness. Stigma contributes another major stress we can well do without. Stigma and prejudice are as distressing as the symptoms of dementia. Most often stigma involves inaccurate and hurtful representations, and usually includes isolation, dehumanising and making us an object of fear or ridicule. We can also develop self-stigma which occurs because we can view ourselves by our symptoms and how others treat us, and therefore it is easy to feel ashamed about whom we are becoming.
Grief and loss – is a normal part of accepting a terminal illness. It is more often associated with death, and this can make the experience of loss in dementia even more difficult, as we don’t accept or validate that what we are going through is a grieving process. Grief after a diagnosis of dementia is not very different to any other loss, and includes: Shock and denial, Fear and guilt, Anger: it is normal to feel anger about what is happening – it is a big part of grief. Help us find ways to overcome the anger and replace it with positive activity and thinking. Bargaining (e.g. if I do this, it won’t happen or I will get better). Depression, reflection, loneliness (we feel very alone when first diagnosed) – depression a normal part of grieving; it needs proper assessment; it may not need medication as it is a ‘normal’ part of the grief process; management through positive activity and counseling may be more productive. Finally most of us find acceptance.
Dementia care is caring for people who often do not know they need care, and don’t want to be in care; no wonder they may become angry and upset!
Posted 24 October 2011
If you missed my story in The Big Issue (Australia) magazine and would still like to read it, here is a link to the International Network of Street Newspapers, where it has been published online;
ABC TV 7.30 Report story covering the Fight Dementia campaign rally;
FIGHT DEMENTIA MARCH on Parliament House 13 October 2011
Posted 16 October 2011
My first every rally and… first ever campaign speech! Attending the Fight Dementia National campaign rally in Canberra on 13 October 2011 was both terrifying and exciting, but if we don’t speak out now, our children and grandchildren will be living with a health system far worse than the one we’ve got now.
Posted 7 September 2011
Making the most of dementia
This disease has given me a renewed and strengthened courage and inner strength, introduced me to dozens of new and truly amazing people, and I feel blessed it is progressing slowly, giving me the chance to speak out about it. It is through my words that I try to make the experience better for others, and it has opened up the window into my creativity to write poems and tell my stories. Do I love it? … no, but the experience is one I am not afraid of, and one I want to make a positive journey.
Posted 5 September 2011
The Big Issue magazine issue 389
Buy a copy from your favourite vendor next week… my updated personal story about living with dementia is in it!
Posted 31 August 2011
Dementia: My New World
Authors note: this story was the first one I wrote having receiving the diagnosis of dementia, and was published in LINK Disability magazine in October 2008.
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.
I regularly do not understand or remember what I read, or what people say to me. I now forget the meaning of words, even simple ones, words I have been using for years; I forget how to spell even simple words like ‘that’. Perhaps not forgotten, but for reasons unknown my brain now mixes things up as if I have dyslexia, so for example ‘that’ gets spelt like ‘atht’, and 89 written as 98. This used to be just occasionally, but now it is most days. Reading has become a pointless exercise, due to the fact that as I read one paragraph, I have already forgotten the last. So taking notes of every single thing I read that I will need to recall has not become an option. Even writing a simple email or card to a friend has become a major task, because if I don’t go very slowly, or take the time to edit it over and over, the words come out wrong. Writing is also difficult, as I forget what I’ve written, and forgotten what the words mean.
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.
Assistance is already required from others to begin and close my days. They begin with disciplined planning, as if for a preschooler, with maps and instructions, including pictures of the people I am going to see. Not so much those I have known for a long time, but definitely the newer faces. I meet the same people at the beginning of a semester over and over again before I have any recollection of having met them before, and then only with a great amount of effort and planning to embed them into my memory.
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.
Kate Swaffer © 2011/12/13/14/15/16/18 | Activist, Author, Speaker | All rights reserved. Subject to the Copyright Act 1968, no part of this online website may be reproduced, stored in a retrieval system, or transmitted in any form, or by any means, electronic, mechanical, photocopying, printed, recording or otherwise, without the prior written permission of the author.