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How to understand and help prevent dementia

by Amanda Collins

Ita Buttrose is an Australian icon. A journalist, businesswoman, TV personality and author, she was the Founding Editor of Cleo and the youngest person to ever be appointed Editor of the Australian Woman’s Weekly.

An impressive combination of focus, intelligence and determination, Buttrose is also a passionate campaigner for dementia awareness, and as an ambassador for Alzheimer’s Australia, she speaks to us about Dementia Awareness Month, her personal connection with the disease and her hope for the future.

A committed champion for dementia research, treatment and patient care, Ita explains that her fervor for the cause began when her father, Charles Buttrose – himself a journalist, editor and author, was diagnosed with vascular dementia. “I understand what the journey is like for a person with dementia, and their families,” she said.

Dementia is on the rise, and Buttrose is determined to see that its research and treatment, as well as the care for sufferers, becomes a national priority.

“Dementia is so prevalent now, so many of us know someone or have a family member with the disease,” she said

Indeed the figures are staggering. Dementia is the second leading cause of death in Australia. Currently there are 342,800 people in the country living with the disease, and each week sees another 1,800 new cases added to this number – that’s roughly one diagnosis every six minutes. Shockingly, this figure is set to jump up to 7,400 new cases each week in the next 35 years.

Removing stigma to create a dementia-friendly Australia

Chronic, relentless and indiscriminate, dementia is one of the biggest worldwide disease crisis’ of the 21st century. In fact, even the word dementia alone is enough to strike fear into most people. The fear of the loss of self, the loss of control, the loss of life.

It is this fear, coupled with misconceptions about the disease, which are the driving forces behind the stigma and social isolation that all too often accompany the disease.

“Often people don’t quite know how they should behave around someone with the disease. They sometimes cut themselves off from that person,” Buttrose said.

And it’s this isolation, this stigma, which Dementia Awareness Month is hoping to address with the theme Creating a Dementia-Friendly Nation.

“When we talk about a dementia-friendly Australia, we’re talking about an Australia in which the person with dementia still feels like a valued member of the community,” Buttrose said.

Understanding dementia

Dementia is a collection of symptoms caused by brain disorders. It is a disease, not a normal part of ageing. It is not contagious, and it can happen to anybody, regardless of age.

There are numerous different types of dementia, and symptoms can affect memory, behaviour and a person’s ability to do everyday tasks.

There are three stages of dementia: early dementia, moderate dementia and advanced dementia, and whilst some people’s abilities will deteriorate quickly- over a few months, for others, this process will happen over many years.

Importantly, a diagnosis of dementia does not mean that a person will lose everything, that they will become catatonic.

People with dementia retain skills, memories and can contribute to society. While they might be a bit slower, or get confused, they still want human connection.

Sadly, 50% of Australians think a person with dementia can’t have a meaningful conversation, and 11.7% would actively avoid spending time with a person with dementia. As such, people with the disease often lose a lot of friends and family who simply don’t know how to approach them.

Speaking passionately about this issue Buttrose said  “How would you want to be treated if you were the person with dementia?”

“You’d want people to talk to you. You might forget a word or two, you might forget a memory, but there’s lots of other memories that people with dementia do remember and want to talk about”.

Dementia-friendly communities

Determined to see a cultural change in Australia regarding the treatment of people with the disease, Buttrose said that a dementia-friendly Australia is a place where sufferers are allowed to “still take part in things that happen in the community”.

“You might have a dementia friendly choir, you might have a walking group where people with dementia can go with carers or other people and go walking,” she said.

“You might have an art class, you might have a special day of activities outside, and there might be some physical activity: a picnic in the park – things like that, things that we all do.

“And people with dementia, many of them, can still hold down a job. Maybe not the job they once did, but they are still able to do some light work and they would like to be a part of the community.

“And they like people to say hello and good morning,” she added.

Supporting a life with purpose

Creating a dementia-friendly Australia also means supporting sufferers to live a purposeful life.

“Most people with dementia are quite happy,” said Buttrose, adding “if they can just keep their routine”.

“My Dad, we managed to keep him at home, my Dad used to love his garden. He was a great gardener in his day. But when he got the dementia he was very happy if he could just rake the leaves up. Very happy. And it’s as simple as that,” she added.

Advice for aged care workers

Moving a person with dementia into an aged care facility is stressful, not only for the person themselves, but also for their family. Speaking about the importance of person-centred care for people with dementia, Buttrose encouraged aged care workers dealing with dementia patients to remember that the move is often accompanied by an emotional upheaval.

“The family feels guilty when they put somebody with dementia into aged care. They feel relief and they feel guilty. So there’s all these emotions going on, and often when a person with dementia does move into an aged care facility it’s a very disorienting time for them,” she said.

“The thing to remember about dementia is that they like to have their routine. And when the routine gets interrupted it makes them feel anxious, it makes them feel disoriented, and they can feel very confused, so you need to know that about them.

“Remember, they’re still a person,” she added.

Passions remain

In the community, and in aged care facilities, there often aren’t enough activities for people with dementia. As such, Buttrose champions the inclusion of activities into the daily routine of dementia sufferers.

“Music is a wonderful therapy,” Buttrose said.

“We know that somebody who might have played, say, the violin in their youth, they don’t necessarily forget that. And so if you give them a violin you’ll find them happily playing it. And that’s really wonderful therapy for them. A trumpet player still plays the trumpet. Someone can still play piano. They might forget all sorts of things, but somehow, for a lot of people with dementia, these skills are still there. They just have to be awakened,” she added.

Working toward a kinder community

With the aim of creating a more inclusive, kinder community, Alzheimer’s Australia has developed a range of hugely helpful training kits for people and businesses keen to understand how to connect with sufferers.

The kits can help with more complex situations, as well as simple ones, like helping someone out if they get confused at a supermarket check-out.

“So instead of thinking ‘oh what is that person doing’ we want people to stop and think, ‘oh gosh, could it be dementia?’” Buttrose said.

“And then you might be able to say ‘come look, we’ll just sort this out’. Because that’s often all it takes. Just one little simple gesture. And you say ‘now that’s the credit card you want to use’. And they say ‘ah yes that’s right’ and everything’s back on track again.”

“It’s being thoughtful and considerate,” she added.

The resources can be found at www.fightdementia.org.au.

Dementia prevention

At present there is no cure for dementia. Researchers in Australia and overseas are however hard at work, with many saying a breakthrough could be here in as little as just a few years.

The good news is that there are things people can do everyday to lessen their chances of developing the disease.

“You’ve got to look after your brain from the beginning,” said Buttrose.

“It’s not something you get to 50 and you think, ‘Oh gosh, maybe I better do something about my brain I might get Alzheimer’s or dementia’. No. No, No, No! You’ve got to protect your brain from the beginning. As soon as you’re able. Your brain is your brain, you’ve got to look after it,” she added.

A five step program from Alzheimer’s Australia called Your Brain Matters is designed to address the health and lifestyle factors that may lower the risk of developing dementia.

These steps include: looking after your heart, being physically active, mentally challenging your brain, following a healthy diet and enjoying social activity.

Ita’s tips to keep the brain healthy

  • “You need to keep your blood pressure under control, your blood sugar, your cholesterol levels, you need to eat healthily, and watch your weight.”
  • “Do some physical exercise – and I don’t mean run a marathon, but the brain needs physical activity just as much as it needs mental activity.”
  • “Mentally challenge your brain. Do things your brain’s not familiar with. You might read a book, learn a new language or learn a new sport.”
  • “Be socially active within the community. If you live by yourself or you don’t have a lot of friends, consider becoming a volunteer, or the libraries in the area in which you live always have events and happenings going on. They’re a great place to meet people.”
  • Enjoy your life!

To find out more visit: www.yourbrainmatters.org.au.

Get involved!

From 01 – 30 September, Dementia Awareness Month, Alzheimer’s Australia is running a number of activities and talks. To get involved, visit fightdementia.org.au.

Do you have a passion for community care?

Why not turn your interest into a career. Study a Certificate IV in Aged Care, online, in your own time, and make a real difference in people’s lives!

30 Responses

  1. Sonia Doorgasingh says:

    Thank you Ita for making me think again. For putting this across so warmly, succinctly and yet easy to take on board. You have reminded us to think more compassionately about the many people around us who may be dealing with dementia but most importantly to “Remember, they’re still a person,”

  2. Christopher Reid says:

    Caring for an ageing population presents great challenges. My experience is that dementia is a label used whenever an elderly persons shows up with challenging behaviours. Generally speaking a brain autopsy is the only clinically reliable way of diagnosing most variations of dementia. There is inadequate attention given to mental health issues in the elderly that have remained unreported and untreated and become more evident as cognitive function deteriorates with ageing processes including non specific white matter disruption, poor nutrition etc.

  3. dee says:

    My grandmother had dementia and it was the first time that I saw how it affects the person overall.
    My mother, I suspect has it too but denies it and I am worried that soon I too may develop dementia at some point of time in my life and this is very frightening.
    Very little is known about dementia. Why some gets it and others don’t. We need more research on dementia.

  4. Heidi Lane says:

    Thank you Ita for relaying this huge problem in such an easy read but very understandable. Compassionately arranged for all to be able to take steps in the fight for our fellow person.

  5. Lionel says:

    My wife, now 78 has Parkinson and she seems to have a lot in common with your aims. How do you feel about Parkinson? And the way sufferers are treated.

  6. Elizabeth says:

    Ita’s a nice lady, but she has no medical qualifications whatsoever, to be spouting on about dementia.

    Why not get Prof Kerryn Philps to comment instead. At least she’s a highly qualified female medico, who knows what she’s talking about.

    • Sarah MacDiarmid says:

      Hi Elizabeth,

      Thanks for your comment. We spoke to Ita because she is an ambassador for Alzheimer’s Australia – the organisers of Dementia Awareness Month – and is particularly passionate about championing dementia research, treatment and patient care.

      All the best,
      Sarah, Open Colleges team

  7. Kirsten Chisholm says:

    This article has some really useful information and some interesting links.
    I think that the use of music as a therapy is worth pursuing. Listening to music has been shown to fire up the brain and scans of those who actually play music, show fireworks going off in their brains. Simple methods of playing music should be a routine part of dementia care as should encouragement for those who play more complicated instruments, woodwind, strings, and keyboard. Respect for the patient should always be present , these people are our friends and have usually made great unseen contributions during their lifetimes

  8. Sue Weber says:

    Alzheimer’s disease and dementia will “continue to rise unless dietary patterns change to those with less reliance on animal products.” This is consistent with data showing those who eat vegetarian appear two to three times less likely to become demented, and the longer one eats meat-free, the lower the associated risk of dementia.
    http://nutritionfacts.org/…/where-are-the-lowest-rates-of-…/

  9. Ann says:

    The comment on vegetarian diet being an indicator for dementia is not an experience i have found. My aunt in-law that has now developed dementia (quite rapidly) was a vegetarian all her life. Three of the ten siblings have developed it so far as we know. Her sister (my mother in-law) has had dementia for about 15 years and now advanced but still cared for in the home by family has always been a meat eater. Their brother who also has dementia was a priest and ate some meat too. I think the familial factor has a lot more weight than the dietary factor in terms of predisposition to the disease.

  10. Ruth Templer says:

    I am struggling with the rapid onset Alzheimer’s which has taken over my mum. I long for her to question my sense of style or ask me what have I done to my hair !!!
    As a very good friend of mine said recently, aging is not for sissies !!

  11. Doug Snow says:

    My Mother in Law had Dementia and I’ve always wondered what causes it. From being with her for many of her last years and observing her living habits, I realised that she did not drink much water throughout the day. Dehydration may be a cause of dementia as with dehydration, it is the brain that is affected, not the arms or legs as we see in severe cases of athletes. Over a long term it could have a detrimental effect like dementia.

  12. Jane Tuckwell says:

    It certainly seems lifestyle-related, if you check out the incidence per country on http://www.worldlifeexpectancy.com/cause-of-death/alzheimers-dementia/by-country/ . All the western countries have a high incidence.
    One of the countries with a very low rate is India, and it has since been discovered that turmeric is one of the reasons. It can even reduce dementia in people who are already suffering from it. The hard part is getting your relative to swallow the big yellow tablets, though it can of course be taken as food, especially if they like curry.

  13. bernard morris says:

    My wife is in her late seventies and has dementia. She is in a nursing home because I was unable to care for by myself. She was a regular church goer and had worshipped at the same church for over 30 years (This to indicate the fear that perfectly rational people have) She attended services at church even when in the nursing home until one day I called to collect her and I noticed that all to congregation chose to walk in front of her as she sat in a chair and even as we were leaving they pretended not to see her. Even the vicar didn’t acknowledge her presence. This was purely fear on their part as they are all good kind people. The vicar would not let anyone of us address them to explain about dementia. The 4 or five who have visited her are amazed the she recognises them and “Seems Normal”. My lovely wife took a long time to try and understand their fears, I told them I was going to write a novella about the excuses they give for not visiting (1 regular every week)

  14. melissa says:

    Doug Snow;
    Each person with dementia travels their own path, develops their own patterns & behaviours.
    Some may lose interest in food, whilst others will ravenously eat everything and anything they can find (including non-edible products like the paper napkin next to their plate).
    Some will ask for 40 cups of tea a day because they’ve forgotten that they just finished a cup 5 minutes, or even one minute ago.
    And some will develop an extreme resistance to drinking fluids, which leads to dehydration, ongoing constipation and persistant Urinary tract infections.
    The problems of dementia are not just ‘memory’ affected; The disease eventually affects the whole physical body (muscles seize up, bladder & bowel function shuts down, mobility and speech are lost…the list goes on..).
    You can give or encourage a drink to a person affected by dementia, but it doesn’t mean they’ll drink it.
    Many times they will refuse it and push it away, or just stare blankly at it.
    There’s a reason we have those drinking beakers with lids, spouts and / or straws in our dementia units.. we can ‘pour it in’ when they are refusing (or have forgotten how to ‘sip it in’).
    Some will recall & automatically replicate the ‘sucking’ motion from babyhood, by drinking from a straw.
    There is never usually any objection to this, they drink it, often ‘guzzle’ it, so thirsty are they.
    Sometimes it needs to be ‘given’ to them, rather than ‘offering’ it to them.
    A bowl of Jelly (solidified flavoured water) works well when a person with dementia refuses to drink; a bowl of jelly is about equal to a bowl of fluids.
    ‘Icy poles’ work well too. Several of my high-care dementia clients who won’t drink fluids, suck at their icy poles or tuck into their jelly, thinking they have just been given a treat.
    But no… It’s just me, making sure they’re getting their fluids!
    I hope this clears up ‘dehydration and dementia’ for you, Doug.
    P.S: I hold a Cert. IV certificate in Dementia Care & have 35 years experience in this area.

    Regards,
    melissa.

  15. Stephen B says:

    A great article, well written and with some good tips on continuing care and ‘normalness’. My mother has vascular dementia so I am all too aware of the condition.

  16. Emilia Randell says:

    Thank you so much Ita for your support and time you give to dementia research! I lost my beloved Nana to Dementia only a few months ago . Despite my Nana getting dementia I would still visit her and take her out on a regular basis for lunch etc. It pains me to see how many dementia sufferers are isolated simply because their family does not want to deal with it. Yes, it was hard every time seeing her the way she was however I wouldn’t of had it any other way.

  17. Alf Russo says:

    We all seem to be concerned about the lack of knowledge about Alzheimers/Dementia and all those terms used to label a person who is unable to use the short term memory any longer.
    But, I just wonder how many of us are actually contributing to Alzheimers/Dementia research. Probably not many.
    The fact of this matter is that just like cancers, lymphomas, alzheimers/dementia are more evident now because due to better health we are all living longer and so all those issues that probably were prevalent in the past, we never knew they existed because human beings were dying at earlier age and the common cause was just old age

  18. bill griffith says:

    One does not have to be medically qualified to talk about dementia when one has lived through with a loved one such as Ita did with her father. What is it with Australia’s obsession with quaifications rather than practical experience ? I am certainly not qualified in medicine but am well qualified to talk about meningitis as I have had it three times. I dare say that my family members are “qualified” to talk about this as well. What un medically unqualified Ita Buttrose learnt witnessing her father suffer from dementia is what the medically qualified learnt from reading the books.

  19. Jo says:

    Excellent, Ita is a great spokesperson for Alzheimers Australia. However I would like to add dementia is not just about memory loss. If that was all it is it would not be too difficult to deal with. The behavioural issues can be far more of a problem even with mild dementia, depending on frontal lobe involvement. It would be great if Alzhemers Australia could be upfront about the behavioural issues and provide strategies for carers. Also the Montessori method of dementia care is very good – I wish that I could have used that with my mother.

  20. Mamamia says:

    I guess I hope I don’t get it, though sometimes I’m wondering if I haven’t already got it. Has anyone thought of the fact of the amount of knowledge we have stored? At 70 say, One has been around for a long time. The young people of today, don’t have all the knowledge of 50 years ago. If there’s something I can’t think of, or a name I can’t recall, I find if I relax my brain, it comes to me. High Tension often confuses the brain. Be active physically, talk to your friends, keep up you communication skills, we all reach a limit to doing things, we are all different. I’m an owl, and still get up early in the morning. I don’t seem to need much sleep, my D-I-L needs twice as much at 40yrs.

  21. Sam Marshall says:

    Ita you made me cry. M y wife had dementia and I watched as she slowly got worse.
    I felt hopeless and helpless and when she left me and the family,
    She was taken into hospital at about 2am and left me broken hearted at 6/30am.
    Not only me but all the family and like you I’ve done a lot of soul searching.
    Could I have done more . could I have done better. I don’t know. the only thing that me and my daughter in law was very upset about when the so called doctor came and asked if it was worth saving her. Considering her life style.
    To me that was cruel. I said there’s 59 years of love and caring that my wife as gave to me. please try and save her. His words still haunt me.
    Thank you for this great service you are doing for everybody.
    May God bless you

  22. Sam Marshall says:

    I wish to thank all who try to help other people
    in need

  23. Camellia says:

    Bill Griffith,

    I couldn’t agree more – Society is obsessed with “Qualifications” and we are forgetting that a life full of experience is a Qualification in itself.

    Go Ita!

  24. Theresa says:

    My mother has dementia and is in a nursing home. She has minimal movement, is bowel and bladder incontinent, her hands are now “clawing”, she is frightened and acts out if staff don’t talk to her and explain in very simple terms and slowly what they are doing/what will happen next, she often stares blankly, she mumbles incoherently and is unable to communicate, she plays with food and drink and can rub it through her hair and over her clothes if no one is there to help feed her, she can soil herself and spread it everywhere if unattended, a number of staffmembers do not clean her properly after such an event leading to potential infections, she can be entirely non-cooperative and refuse to have her teeth brushed or her face wiped if a staff member is rushing and pushy. I could go on.
    Being immobile, my mother is not in a dementia-specific section of the nursing home, but rather with other high-care patients. The reality is that unless she was perhaps in a 5 star nursing home, staff to resident ratios are unregulated and in her case, are at best two staff to every fourteen very high care residents. Most are not dementia trained, are not allowed to spend any more than ten minutes feeding a resident (it takes an hour to feed my mother), either aren’t educated about rohos to help prevent pressure sores or can’t be bothered using them, can leave residents in their own excrement for hours sometimes because of time constraints and inadequate staffing levels, don’t have the time to try to coax residents to take medication, often leave residents dehydrated or underfed again due to time constraints, can leave residents in very uncomfortable positions in beds and wheelchairs with residents unable to voice their discomfort and sometimes pain, have little time and sometimes little interest in smiling at/being personable with residents, don’t bother to put on or clean residents glasses who can see little without them, etc.
    I appreciate Ita’s commitment and passion, but with continual and worsening govt funding of nursing homes, and the challenge of attracting and retaining quality care workers and nursing staff to the area, it is hard to envisage how many of Ita’s well-intentioned suggestions on enhancing the quality of the “existence” of those with advanced dementia, can actually be enacted.
    My mother is lucky to have family who together with paid additional carers, ensure a more comfortable and humane existence her in the nursing home.

  25. Rhonda says:

    Hi, I have read this article with great interest,my husband was diagnosed with frontal Lobal Dementia, he was 55 yrs old and had been undiagnosed for 6 years. He is now 61. We had been told many different reasons and that we needed to prepare ourselves for his passing, this was 4 years ago. He is in a Nursing home and I agree with Theresa [4/1/16] some of the staff do not know how to treat residents in nursing homes, they are not properly trained and in fact they couldn’t believe that someone so young could suffer from this condition. Unfortunately my husband had the worst type of symptoms , he did become aggressive toward me in the beginning and during the years before he was diagnosed, and because I shared this with the Director of Nursing of the home she has labelled him as a aggressive resident. Mind you all he does now is sit in his own room by himself and doesn’t hurt anyone, or talk to anyone and none of the staff go near him except to shower him, change him or take in his meals. He is incontinent all the time and they often leave him sitting in his soiled or wet nappy. He is now eating puree food as he couldn’t swallow food and for four days no-one checked on this they just took his food away from him thinking he didn’t want to eat.When I visited him I tried to feed him and he was gagging on his food, before anyone would believe me they said they had to get him assessed. I would love to have answers, and support, but none of these are forthcoming, especially Alzheimer Australia , there is no support or follow up for families, we are all left to fend for ourselves and learn to cope. My sons and I have been a great support to each, and the Nursing home certainly doesn’t support you. It might sound awful however I have prayed for my husband to close his eyes and have peace. The worst thing is yes there is a stigma for Dementia people and friends do desert you, and they don’t support you it is a lonely journey.

  26. Adelaide ◆ says:

    In August 2015 my partner’s Dad died …..he had Dementia for some time prior to his death.
    Finding out as much as possible about Dementia , tapping into as many services as possible and the emotional support from the Dementia Support Group run from the Springwood Neighbourhood Centre ( Springwood is in the Blue Mountains NSW ) meant that my partner and her Mum were able to provide good quality care at home for this person who developed Vascular Dementia. Only in the last 3 months of his life was my partners Dad in a high care Dementia specific unit at an Aged Care Facility . After some more research this fantastic facility was found and provided excellent care by some high quality staff.
    Morale of the story …..get as much information as you can , use as many services as you can access, dont be reluctant to ask for support, be open about the situation with others and look after yourself so you can look after the person in your life with Dementia .

  27. in Brisbane says:

    The medical establishment does not know the cause of dementia.
    It’s a neurological disease.
    Many consumables contain ingredients that are known neurological attacking substances.
    Women are warned against eating high-ocean-feeding fish while pregnant.
    Many cosmetics contain ingredients where metal elements are included.
    Even vaccines are associated with dementia because of ingredients.
    Lead was removed from fuel long ago.
    Dementia Australia should be looking at all these things.
    Support and caring for those with dementia is paramount to all, and so is limiting our exposure to known associated toxins.

  28. Bridgette Pace says:

    Both my parents had dementia but each at different levels. One was quite bad and the other fairly mild. I have had over 10 years of experience looking after them. They have only recently passed away. Both of them however needed and responded to the love and care provided by myself and my brother. I am so grateful that I had an opportunity to care for them in my home and even though it was very difficult at times, there was so much love from them that I would never have given up that role for anything in the world.

    What I have learned, with great sadness, is that most people including doctors, nurses, allied
    personnel etc. treat the elderly with very little humanity or compassion. If the elderly happen to have dementia, the attitude is even worse, i.e. waste of resources and time. Sufferers of dementia are very much human and they respond to kindness and other pleasing stimuli. They know when someone is treating them badly or ignoring them. My parents knew who we were and even if the scenario was different and they did not recognize us I would say to those people who usually complain that “what is the point visiting them because they don’t know who we are”, I respond “but you do – and that should be enough”.

    Especially in nursing homes, whether the person has mild dementia or not, they are treated as if they are imbeciles, spoken to in an infantile manner and not even called by their own name – but “mumma” and “pappa”.

    A person would have to be dead not to be aware of the many horror stories of people being poorly treated in nursing home than vice versa – and they are all true.

    The commentator “Elizabeth” obviously has no clue about dementia because what a dementia sufferer needs is a kind compassionate and caring person to take care of them – not a qualified doctor as she suggested, particularly as there is no cure for dementia. I have seen medical personnel act so off hand and cruelly towards dementia sufferers because of their ignorance of the disease and poor attitude towards the elderly that when I see one that does treat them with dignity and respect, it almost brings me to tears .

    Looking after a dementia sufferer really only requires common sense, intelligence and a caring and compassionate attitude. From what I have experienced and observed in nursing homes and the medical personnel in hospitals those attributes are very few and far between. Other physical ailments can and should be attended to by an appropriate medical practitioner.

    I could not agree more with the previous commentators, Bill Griffith and Camilla. Carers are usually family members who diligently observe their loved one and are far more “qualified” to understand their needs, not a stranger – who may be medically or certificate qualified. In addition, carers should have a political platform where their views and recommendations are included in any policy making decisions regarding dementia care.

    A good doctor will listen and say “you know them best” and usually take the cue from the family’s information. Some do this but many others do not. The “do gooders” of the world think they know it all and just tick the boxes and believe all is well – that not only lacks insight but places all the dementia suffers into a box labeled “dementia”. Their view generally is that all dementia sufferers belong in a nursing home as if they are aliens that need to be locked up and away from society and left to die.

    Anyone who has any in depth experience of dementia knows and understands that it is fluid disease and every day is different. Some days there is clarity and other days less. In any case, they are human beings and deserve to be treated with dignity and respect.

    I have seen the Guardianship Tribunal, NCAT, Public Trustee, hospital personnel, nurses etc. all
    treat the elderly as if they are invisable. They have no human rights, no voice, no legal rights and nowhere to turn unless they have family to fight for them. They are removed from their homes, their estates are depleted and they are pushed into nursing homes against their will.

    I hope the day comes, before I get old, that Australia follows Denmark where nursing homes are closed down and new construction banned. These “institutions” are replaced by a more humane and compassionate model of care. It also incorporates a system where care workers who really want to work within the aged care industry are paid well and respected.

    Whilst there are a few genuinely good care workers and some nursing homes that are trying to do their best, in the main, we have personnel who work in aged care facilities because they are unqualified or skilled to do anything else. Dementia care requires special care and yet these nursing home and attract and employ the wrong sort of people.

    Nursing Homes are big business and many have listed on the stock exchange yet have the temerity to say that they are financially struggling. Aged Care in Australia could provide very well for the aged and dementia sufferers if its current model was thrown out the window and a new culture of respect and compassion replace the current one of “lock them up and throw away the key”.

    Bridgette Pace

  29. Leanne says:

    I have always thought of Ita as a lovely Aussie lady and thank her for the time taken for her to write on this very common medical condition and also to share her own Dementia experience relating to
    her father. My father also had it amongst other things (heart problems etc.) and I lost Dad October
    last year at 81. It breaks one heart to witness them just sitting there alone in their chair just staring
    into space – I used to feel awkward and useless sometimes running out of things to talk about or
    say to him. But just holding his hand and stroking his head when I look back, was all that was needed sometimes as I suppose I was providing comfort and closeness to him even if I was not saying anything. I miss him so much but know he is still here in spirit so that helps.

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