Two weeks ago, while visiting my mother in her aged care home, I spoke with a lovely older woman whose husband is also a resident in the dementia ward with my mum. After a few minutes of talking, she gestured to a poster on the wall featuring a cheerful young woman walking arm in arm with an older man, presumably her father, advertising mental health support for carers.
“You see this? I hate this,” she said. She then pointed at a mass of residents in the memory support unit and bluntly remarked, “there’s no joy in this.” The more I looked at the poster, the more I realised that her words echoed my own frustrations.
As the primary care of my own mother who has now lost her ability to meaningfully communicate or walk, I bristle when I hear someone correct another person for the use of the word “suffering” to describe a dementia experience. To me, that word captures the brutal truth of this condition for many. Enforcing positivity feels like an attempt to sanitise a condition that is anything but gentle and also undermine the grief someone is potentially feeling.
In recent years, I have grown increasingly frustrated with the relentless push for positive framing around this devastating condition.
Obviously, I can understand the intent behind dementia organisations’ efforts to avoid negative stereotypes and promote dignity for those living with dementia. But for many carers like me, the glossy upbeat imagery and carefully curated language feel like disingenuous masking of a grim reality.
Dementia advocates aks for language that is “accurate, respectful, inclusive, empowering, and non stigmatising.” Terms like “sufferer” or “victim” are discouraged, replaced with phrases like “person living with dementia” to emphasise dignity and individuality. I get it, language matters, and for those in the early stages of dementia who can still engage meaningfully, this positivity can foster hope and reduce stigma.
However, The problem with relentless optimism is that it shapes public perception in ways that undermine carers and those with advanced dementia.
The general public, with limited exposure to the condition beyond these polished campaigns, often sees dementia as mere forgetfulness, an elderly person misplacing their keys or struggling to recall names.
In reality, dementia can manifest as violent aggression, inability to swallow, or complete loss of self. My mother’s condition has left us guessing her needs, grappling with her unrecognisable behaviour, and mourning her incremental losses.
Yet, the public’s rose tinted view diminishes the burnout carers experience, undervalues the tireless work of aged care staff, and can even foster intolerance for behaviours that don’t fit the “forgetful but happy” stereotype. I’ve also heard comments like, “he must have other issues if he’s lashing out, that’s not just dementia.”
This misunderstanding stems directly from the lack of realistic portrayals.
Late last year, I wrote about The Alzheimer’s Society (UK)’s “Long Goodbye” campaign, which sparked controversy for its stark depiction of dementia as a series of emotional “deaths” as loved ones lose cognitive abilities. Critics argued it was too negative, amplifying stigma and ignoring the potential for joy and connection.
I found it painfully accurate, it mirrored my own experience of losing my mother piece by piece. I acknowledge that dementia is a spectrum. For some, especially in the early stages, life can remain fulfilling, with moments of joy and purpose. The challenge is balancing these truths in public messaging.
The insistence on positivity risks alienating those of us grappling with dementia’s harshest realities. It’s not about wallowing in despair but about honesty. Campaigns should reflect the diversity of dementia experiences, celebrating resilience where it exists but not shying away from the pain, exhaustion, and loss that many endure.
Realistic depictions could foster greater public empathy, better support for carers, and more respect for aged care workers. They could also prepare families for the challenges ahead, rather than leaving us blindsided by a reality that no amount of positive language can soften.
Hi Jakob,
Your words resonate with me deeply. This disease is relentless in its cruelty, wreaking havoc on everyone involved.
After a career in UK social housing, I moved to Australia and retrained as a health worker. I seized the opportunity to study dementia care and neuroscience, gaining a deeper understanding of life for those living with dementia. My subsequent experiences were confronting, painful to witness, and often desperate.
Caring for individuals with dementia presents unique challenges that are difficult to fully anticipate. Despite our best efforts to sugarcoat the reality, the day-to-day can often be a nightmare for those struggling to break free from the grip of dementia.
I’ve always tried to approach my work with empathy, but I can never fully understand the trauma my patients endure. If there were even a glimmer of hope for a cure, it would bring a more positive outlook to the situation.
But what else can we do but continue to try and support, empathise, and walk the journey with the ones we care for and the ones we love, firmer understanding and awareness will help, but will never be the answer until there is a real cure.
Kindest regards, and always here to talk if you need to.
I couldn’t agree more, we can not or shouldn’t sugar-coat the harsh reality. The journey of the family members are often hidden from the public eyes.
Thank you for being brave enough to publish this article. I agree with it wholeheartedly. Dementia is truly hideous for the patient, their carers and families. Even in aged care homes they are often hidden away from other residents. Nobody wants to know they even exist. Every day I wish my mother was no longer with us.
Dementia of all types is often a devastating disease that strips the person of dignity and choice. It is progressive and the persons loved ones suffer for years in an ongoing hope they are being recognised, heard and understood by the sufferer.
If I have interpreted your article correctly then I agree, Jakob.
No sugarcoating the reality as it serves little positive purpose!
I agree with every word in this article. My husband after living through the last 8 years with this cruel disease is also in a nursing home suffering the same disability unable to speak in a princess chair unable to stand or walk liquid type foods etc. This is’nt living it’s barely existing but he still smiles when he sees me after 65 years of marriage
Finally someone that speaks out truthfully without sugar coating it.
I’ve worked in aged care for over 25yrs & mainly work with residents with dementia. Watching a resident with early dementia going through each stage it is absolutely heartbreaking. They have their ‘sane moments ‘ where they realise they are doing things that are totally inappropriate & cry telling you that this is not them. This is when you wish that they go into that next stage where they are no longer aware of what they do.
Not all people with dementia are sweet gentle old souls. I have been caught off guard & have been punched, bitten, slagged on, hair pulled out , things thrown at me & verbally abused by a lot of residents with different forms of dementia.
But I will continue to work in aged care looking after families loved ones because I know these residents with dementia didn’t choose to have this disease & don’t understand what they are doing is wrong.
Dementia is such a cruel disease & is so hard on families watching it rob their loved ones of all their cognition & abilities. My mother had dementia & I know how it ravaged her. I will ALWAYS treat my residents with the love, respect & dignity they deserve as my mum did.
I agree 100% eith what you are saying.
I worked for many years in aged care and dealt with residents and families going through the everyday life of living with or living with someone with dementia.
It is one of the hardest diagnosis to try and come to terms with as it progresses.
Thank you for this honest take on dementia.
Wow! I hear you. I so often say to my colleagues that I wish someone could come up with a cure for this insidious disease. It is so unfair. I wish I could come into the Demenia Wing and suddenly everyone there wakes up from this nightmare and look around to say. “Where am I? What is going on”. They all.had a life and personality and things to do and memories. All gone! And yes I am sick to death of being told the “agitated” resident probably has a UTI because they lashed out at someone. They get frustrated. They hardly do anything that would truly make a difference to their long boring days trapped in a ward or highrise with hardly any outdoor walking space or views. Once a month they get to go for a bus drive but only for the lucky few mostly due ue in main to lack of carers to keep an eye on them. No large open spaces on the premises with lots of grass, no animals to see, nothing to look at but the four walls!! The elderly are hidden away from society. Not engaging with nature or the wide society except for a few visits from family if ever or school children. Is it any wonder some will die earlier. 😭
Here, here!! Aged care homes too need stop sugarcoating; stop making memory support units glamourous and tranquil, styling them with tables of puzzles and art activities when they are not touched and the residents not engaged, and putting residents to bed when there is a ‘tour’ of the unit, when the reality is it can be noisy, messy, residents wandering and the room filled with walkers, wheelchairs. Families who care for their loved ones know how chaotic it can be and the reality needs to be evident in the care homes because that is the environment that is endured, that is lived. Memory units are not showcases and should not be presented like display homes but indeed need to be homely, warm and a comforting environment. The wider community and public need to learn and understand all about the Dementia. Like anything, you don’t know it until you experience it or, in this case, walk in the shoes of someone who is a carer. Dementia is confronting, overwhelming and sometimes one can experience some positive and touching moments in the journey. Awareness and education, involvement and engagement needs to be accelerated. The public, educators, medical and health workers and care homes should not keep people in the dark about Dementia and brush it off as part of ageing. A presentation given by a Masters student in Dementia Care gave the statistic that 60% of health professionals still think that Dementia is part of ageing. Dementia is the THE leading cause of death for women and the second leading cause of death overall. With the projected statistics of those who will be diagnosed by 2058, people need to plan and prepare. Failure to do so will result in great despair, fatigue, breakdown and loss. The system is already broken, carer fatigue is fierce and understated. Ignorance and denial, thinking you can deal with it at the time or if it happens will contribute to the demise of those who underestimate and continue to sugarcoat. Sadly, like any warning (e.g. climate change, fires, floods) people don’t act until it’s too late and they become the victim and will then be crying for help and support for some of things they could have prepared for. I planned, educated myself and prepared for a disease that is the most unpredictable, where no two people are affected in exactly the same way, and now find that the greatest challenges are the obstacles being those that purport to offer frameworks, support and funding.
Excellent perspective Jakob. I’m on a similar journey with my dad and your words resonated with me. It takes courage to speak so honestly about dementia when all around there seems to be polished optimism. Thanks for bringing balance and first hand experience to the subject.
This is absolutely spot on .
Thank goodness reality has come to the forefront.
Every other condition is introduced as suffering from but this idea to remove it from the most horrendous disease just baffled me.
Why are they trying to make Dementia a disease that one does not suffer from it destroys the person & their families.
They can change the language all they want but I will & many others will use whatever language they choose to describe the toll this devastating disease does .
It’s a F—-king thief of life
It’s taken away who I once was as a functioning person, a mother , I cannot be the grandmother I want , it’s destroyed my family .
It doesn’t have to be end stages either depending on what brain disease you have & how it affects you & what it steals from you .
All these people promoting “living well with dementia “ can mostly still drive , still participate in activities, have choices , speak at conferences, some write books ect . Their dementia does not compare to others they do not understand & think everyone is the same or others are being negative.
Stick your living well where the sun don’t shine
Oh my god, how this resonates with me. It was my 58th wedding anniversary on Tuesday. I took morning tea down to the MSU where my husband lives. He doesn’t know me now, or the rest of the family. He enjoyed the cake I chose for him but made no sign of recognition. Then the unit manager asked me into her office. She said she had spoken with the Dr and they wanted my permission to put my husband on comfort care and also to fill out a 7-step, pathway. I’d been expecting it but how I wish it wasn’t on that day. I watched him deteriorate and lost a little more of the man I loved piece by piece.. It wasn’t pretty and so many times I cried as I left the premises. All the plans we had made were never fulfilled. There has to be a better way to care for people with dementia. All dignity and quality of life is lost. He can no longer walk, and doesn’t communicate at all. He keeps falling out of bed at night so, I suggested bed sides. That isn’t allowed as it’s a restriction. So it’s ok to risk him breaking a bone, but not to keep him safe in bed. Now they are putting him into a floor level bed. How the hell he’s going to get in and out of it remains to be seen. So yes, dementia is not a gentle, slow slide into death. It’s heartbreaking and messy and demeaning. And our loved ones turn into someone we no longer know.
Lyn, It bothers me that your husband is being put in a floor level bed and you question how he can get out of it. If it is a correct extra low electric bed then the bed can be raised up to normal levels as needed, but if they have improvised a fix low bed then this is horific. I object to the term floor bed as it seems to imply a mattress on the floor. I really hope not. The extra low beds are safer than using bed sides, but it has to be a correct electric low bed design and used appropriately.
As a retired RN who specialised in Aged care, I am alway appalled at the diagnose of Dementia without further investingation. I believe all “dementia” persons should at the very least have a brain scan and full blood infestigations. There are many different types of Dementia and knowing the cause is paramount to giving the correct care and management. All other types of dementia must be ruled out before Alzheimers is given as diagnosis. Then carers and family need training in how to care for the type of dementia that your loved ones have. With correct approach and management there would not be so much burn-out for carers. Relatives would benifit from appropriate visits. There is so much that could be done and is not even being considered .
Figure of eight gardens, memory books (if appropriate), entering their world, physical exercise including hydrotherapy., appropiate films and Television programs. Music, singing, playing instruments, craft. The list could go on and would be different for each person depending what they did in their younger life.
Correct diagnosis and education of carers both paid and unpaid would be a good place to start.
Sorry you have the challenge of your Mum’s condition.
Well said, the entire article is a thoughtful and genuine recognition of the tragedy of alzheimers and dementia.
What a good article, so true, but I will always be positive with my wife who is a long term Dementia sufferer. I am guilty of sugar coating it with friends who have not been through it, but only a little bit of sugar not too much, keeps them smiling and involved
I’m a recently retired RN and have worked in the Ageing and Disability sectors for several decades and in different States. Funding and politics underline the language used to describe the aspects of dementia diagnosis and care. Politicians and bureaucrats tend to create divisions between the administration and funding of Mental Health, General Health, Disability Aged Care and Aged Care Support. The language used reflects this. Direct Care staff tend to promote a holistic health approach that needs some or all services at different times or together. The stopping and starting of required supports leads to unrealistic perceptions and contributes to the grief experienced by families and direct care staff.
thanks for writing your article, your bravery and time. I am sorry to hear that you (and many people in the comments, and who I have met over the years) have had or are currently having such a traumatic time. As a dementia advocate, educator, carer both personally and professionally, I agree, dementia can be traumatic and extremely challenging, heartbreaking and exhausting. The role of a carer is incredibly hard and tiring.
We need to remember that every person’s journey and time with dementia if different to the next person, not just for the PLWD but also the carer. Some days are harder than others. Everyone’s pain is justified and I would hate to think that caers have felt unheard and unsupported. Sometimes people just want to be heard and listened to, and validated.
To anyone currently living with or supporting a person with dementia, we hear you and see you. You are not alone in this time. Please know that there are lots of people that care and can support you including Dementia Australia, Dementia Support Australia, local councils, GPs, and don’t forget about family and friends. Sometimes speaking to somone that is not emotionally involved is helpful such as the organisation above and their 24/7 helpline, a counsellor, chaplian or using the EAP service through your workplace.
I am not trying to discount your valid feelings and heartbreak. Please take on board the little wins that you may see. The PLWD is still a person with heart, feelings and emotions. They can still feel love and happiness. A smile, a gentle touch, the sparkle in their eyes, sharing favourite memories, looking at photos together, putting on their favourite type of music, going outside in the sunshine… it all helps. A person with dementia may not remember who you are or what you’ve done, but they will always remember how you made them feel.
Until there is a cure we are learning so much about risk reductions and preventions. For the people that already have a diagnosis – what can we do to help enable, empower and help them to feel supported in their environment.
People who choose to work in the dementia care industry do it becuase they want to make a difference in your loved ones lives. Knowing that there are many people out there that care for PLWD gives us hope and promise. Thank you.
Hello Natalie
This is a good ship Lilly pop reply
We don’t need this education this article wasn’t about this.
As much as you say people aren’t alone They are
Of course others are in the same situation but it’s
individual & only theirs to live .
Don’t not give us everyone’s journey is different of course it is we know this once again your missing the point of this article .
This looking at photos listening to music , isn’t for everyone & can’t be done everyday .
Your excluding what dementia type one has & their personal likes .
I have frontotemporal dementia I’m a realest.
You have to know me know who I am what I like dislike wgat I can & can’t do
My behaviour fluctuates , I have apathy
I can’t stand being around people at times
I have no idea what I want most days
But I couldn’t stand someone giving me Positive Toxicity , but I do have a great sense of humour
Anyway you’ve totally missed the point of this article
You’ve come to sprinkle fairy dust & this is what we are sick of
I hope you understand . I do know you’ve come to somehow help but not in this case .
Much respect to you
Very true commentary of dementia. It is not an easy path to be travelling on. I applaud the care staff
Your article has hit a note of authenticity with quite a few people. I’m going to bookmark it so I can quote it in future. What is this movement in society where some people get to tell other people how to conceptualise reality? It’s not just in dementia care, it seems to cover a whole range of social constructs. Well done you for ‘deconstructing’ moral imperatives underlying our approach to dementia. The best article I have seen on living with dementia. Enough with the academic pontificating. What you have written is powerful.
It’s frustrating that people who have been in your life for years but don’t live with you or visit often, just lack insight into your day. As a carer, a retired nurse, I am always looking for ways to better support my husband diagnosed with Alzheimer’s. Be it U3A, music, road trips…next on my list the mens shed with his carer. But it can be in your face hard, the apathy, the frustration we both feel as he changes and is more dependent. The disease is slow and changes who we both are. It’s cruel, on good days my husband says he feels like a fraud, on the other days we face the challenge of his apathy, forgetfulness, fatigue and frustrations of not being able to do what he has always done. Thankyou for sharing Jakob. It is a hard road to travel.
Very understanding. The loss of a person’s ability, their history, and their behaviour is agonising, not only for the person with dementia but for the family of the person. It can’t be sugar coated. As a nurse many years ago, before dementia even had a name, I saw families who just stopped caring because all of it was too hard.
Nowadays, you can still be respectful but understanding that the disease itself comes in many forms and violence, anger and sometimes behaviour so unexpected can take away the love.
When it starts, it can be confusing for the carers, then it becomes trying to hold on to the person as they were. The truth is they will never be that person again, so reality has to be accepted and commonsense brought into play.
These are Not new thoughts Not new experiences Not feelings that should be dismissed Unfortunately it may be new to the person who’s family is going through Dementia As a family member to witness the decline in a loved one is devastating People do Not always grow old gracefully Education Awareness is imperative for acceptance ‘Dementia Doesn’t Discriminate’
Thank goodness someone is looking at the shocking sadness & reality associated with having a loved one with Dementia..
So sad to hear about your mum Jakob
Thank you for your honesty Jakob and to everyone else that has shared some of their experiences. I consider myself fortunate in that my father passed before he got to the stage of your mother and many others. As a farmer who hated white walls, hospitals and being confined it would have been the most heartbreaking thing to watch. Also the challenge as a carer, when your role changes from daughter to carer, it stripped away his dignity and wishes. We do need more honesty, support for carers and education that is not sitting and watching a staff compulsory training video. The living and lived experience shared is one of the most valuable learning tools we have. We must always be mindful that everyone’s journey is individual and different.
Thanks again for sharing and “caring”.
I agree totally with your points. I feel like yelling at the TV when the advertisements about Dementia show happy couples together and lots of smiles. This is far from reality and is painting a false picture of the trauma and sadness that is part of dementia suffering for all that love the victims. And yes I use victim because they are that. They are trapped; lost; changed personalities. Let’s give dementia respect and call it out for what it does to someone. I am yet to see anyone excited with the diagnoses and what life ahead will look like. I watched my mother change from a loving kind person to someone that we could not recognise or relate to any more. It was only medication that restored her dignity to some extent but we never really had our real mother ever again