My inner rage, sometimes quiet, sometimes more obvious and loud – against the persistent status quo, particularly in the field of dementia ‘care’ is not meant to be personal, not to any individual, or to any organisation. I am well aware and often say in presentations that almost everyone I know goes to work (paid or as a volunteer work), wanting to do a good job. Frequently, I hear many declare they work in the field of dementia to ‘make a diffference’.
Seriously, it’s not personal…
But we do need a long honest look in the mirror, to ask ourselves, what is the point of the annual World Alzheimer’s Month – Dementia Awareness Month, or the many Dementia Action Week campaigns, when there is still almost no change.
Yes, people with dementia continue to be denied their most basic human rights, and also their disability rights.
It is important we call them out the ‘awareness’ campaigns for what they are – that is, they are ‘marketing campaigns’ – as they are primarily fundraisers for the charities. To date, they have made no difference to our lives.
If they had, we would not see the revolving door of the same research or report topics on issues such as attitudes towards people with dementia and stigma.
More importantly, people with dementia would not still be experiencing Prescribed Disengagement® after their diagnosis.
They would not be faced with the experiences of ageism, ableism, discrimination, stigma, therapeutic nihilism, othering, benevolent othering, or a lack of access to post diagnostic support that includes disability assessment and support beyond ‘Activities of Daily Living’ (ADL’s). We are not even equitably included in the issues , in research, and in the very campaigns that are meant to impact us, such as the dementia-friendly initiatives.
It is not easy though, to look in the mirror, especially when the much promoted ‘change’ which is so cleverly and strategically marketed to garner funds, never shows its face. This is what mostly fuels my discontent.
Looking in the mirror is often painful, but also very liberating. Honesty can also be very painful. I prefer discomfort and truth, to comfort and lies.
People employed to run dementia charities, paid dementia researchers and other academics, clinicians, doctors, allied health care professionals, nurses, aged and dementia care workers, all have significant power over people diagnosed with dementia, due to a multitude of factors.
They are ‘privileged’, and frequently deny us a truly authentic voice. I say this, as even though many feel ‘heard’, outcomes provide strong evidence for the lack of tangible, positive action and change.
The ignorance, paternalism, attitudinal and other biases continue to strip people with dementia of their agency and their autonomy.
The ‘revolving doors of the same research topcis being funded, regardless of many decades of failed research on so many issues still negatively impacting people with dementia and older people needing care, deprives us of our rights.
‘Others’ almost always think they know what is best for people with dementia…
As I said in 2009,
Most days, I feel like my global campaigning has failed the majority of people with dementia. And knowing that my words and work is often plagiarised is annoying although I’m often told to take it as a compliment… Ironically, this theft has helped me accept there has been some positive ripples to my work.
Maybe it is time to stop spending vast amounts of money on World Alzheimer’s Month, Dementia Awareness Month or Dementia Action Week campaigns, and re-invest it in providing real care, not just keeping people without dementia in paid employment?
This blog and other thought-provoking dementia-related insights from Kate can can be found at www.kateswaffer.com
To truly be able to support a person living with dementia at home with at least one informal carer, I need to be able to fund at least four hours per day in the home including weekends. Currently I am forced to book (much less than that) that into blocks of two hours at a time. I can’t access additional CHSP as there are either ‘no service providers with vacancies’ or greedy CHSP service providers who flatly refuse to support my clients with CHSP because they can pick and choose who they give their CHSP funds too so they use it as a anti-competitive tool and say unless my client moves to them as a provider they ‘won’t provide services’. The CAPS funding is not enough for a person living with advanced dementia. $700 a year in continence products it’s more like $300 plus per month. I need to be able to provide escorted transport. Taxi’s have a point where they are no longer suitable. The current funding arrangements for people living in the community with dementia are not enough for me to do anything more than the basics. I do use social support programs heavily but even these don’t continue if a person’s psychological symptoms or physical care needs can no longer be managed. I did the dementia degree some years ago via Wicking and I thank heaven every day that I did, because at least I have a true workers understanding of what we’re up against. I too am fed up, really fed up with hearing how ‘everyone’ is a dementia-care specialist. Hogwash. Trying to support the person to maintain their agency, their voice, their choices and support the family who are living through their own substantial losses, griefs, frustrations, guilt with a protracted disease that is unpredictable, cruel and confusing and grossly underfunded is truly pushing the proverbial kaka up hill with a toothpick. To get SWEP and GEAT funding I have to go through an onerous process which also comes with a waitlist. As someone with 20 years aged care and case management experience its brutal for me. Without me? Without my knowledge, it must be nigh on impossible. And now we have a government who are devaluing and saying people under support at home will only need 10% case management. For sure, if you are fit, mobile, full facultied and still look after yourself with no need for cognitive and clinical support maybe. But for the person with a progressive terminal disease and their loved ones Again I say KAKA! Kate you are 100% right, the help is needed at the coal-face and we need it now. Less feel good hugs, more hands on care.
Too true I so often meet people living with dementia who have been hospitalised with an additional illness who because of the confused reactions caused by delirium or hospital environment are denied the right to return home and against their family and their will place in aged care facilities. Everyone has the right to return to their own home after a hospital stay. Keep up the fight Kate
Congratulations on being the CEO of Dementia Alliance International, Kate Swaffer! For many years, I had been following your amazing career and vital contribution to thinking about dementia, and I wrote about some of your achievements in my 2022 book “Engaging with Ageing: What matters as we grow older”. So I was thrilled to read your article just now, and see that you are continuing with your important work on changing views about dementia.
With best wishes,
Anne Ring (annering.au)
I worked with dementia residents for 20yrs and yet I don’t see much change in attitude or understanding of dementia. I retired 15yrs ago and it breaks my heart to see no change. Training should be updated 6monthly so attitude and care for dementia improves