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,
“There is a gross underestimation of all people with dementia, even in the later stages of the disease.”
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?
