The Chief Executive Officer at Women’s Community Shelters, Annabelle Daniel OAM, wrote an interesting post on LinkedIn recently, which began with Albert Einstein’s quote:

‘The definition of insanity is doing the same thing over and over and expecting different results.’

With the greatest of respect and with very much love for the fierce and wonderful advocates involved here – another report won’t actually change much on older women’s homelessness. The reason? Reports on this subject have been coming out since a ground-breaking report by Mission Australia in 2007, fully 15 years ago and crossing both sides of Government in power. And every Census has revealed this as a growing problem.

Read the full article here…

Einstein may not have been referring to the medical definition of insanity, but it was however, interesting to look up the word. Sadly, the synonyms of insanity still include dementia.

insanity

/ɪnˈsanəti/

the state of being seriously mentally ill; madness; lunacy; extreme foolishness or irrationality

Shelter’s LinkedIn post resonated, as it is very relevant to my work, because I have been saying for many years, dementia advocacy is not working. This is based on observing that very little, perhaps even nothing has changed in terms of getting a timely diagnosis, or of being provided with tangible care and support following a diagnosis. This is also supported by multiple reports and reseach projects and publications.

It is the same for our families and care partners, who receive little, if any support or training in their unpaid caring roles. Jump onto social media, or read other blogs written by unpaid family carers, and you will see them struggling, sometimes desperately, with isolation, and fom a lack of support, inadequate respite choices, lost or faltering careers, and some even living in poverty. They also receive insufficient grief counselling; for example, support for their anticipatory grief, or the grief of watching someone you love change and lose capacity, and especially a lack of grief support after the person they loved or cared for has died. Many past carers have told me they felt completely abandoned by the dementia charities and service providers, after the death of their parent, partner or child with dementia.

The system, the research, the conferences, and the advocacy is failing them too.

If we all keep doing the same things, even with our fingers and toes crossed, hoping that one day things will change, we are as Einstein suggests, a little irrational.

More expensive research, more expensive reports, for example, dedicated to stigma and discrimination experienced by people with dementia and which continue to report the same findings as 10, 20, perhaps even 30 years ago, or another dementia conference, are not working either. Some days, I’m not even sure enough positive ripples have been created, although they have provided very healthy and highly paid careers for a great many people without dementia.

Many others diagnosed with dementia agree with me, although are not always willing to say it publicly. For example, on Tuesday of this week, an online friend sent me a private message, part of which said:

I watched a 30 minute interview you gave recently, and I loved everything you said. It’s a real shame that you keep on needing to repeat the same message over and over again

(Anonymous, person diagnosed with dementia, living in Australia, 11 October 2022)

Dementia does not equate to instant insanity, but constantly doing the same thing over, and over, and over, and over, again and again and again, for decades, and getting the same lousy results, definitely is.

If you are wondering if I am insane for believing there has been no, too little tangible change for people with dementia, and our care partners and families, please answer the following questions honestly. Please note, this list is just a start, as there are many other questions I could have listed, which would also suggest (and prove) there has been insufficient change, despite all of the expensive conferences, expensive research and expensive reports sitting on digital shelves being produced.

• Is it easy to get a timely diagnosis of dementia?
• The World health Organisation recognises dementia as a major cause of disability, but are people diagnosed with dementia routinely advised either at the time of, or soon after their diagnosis, that the symptons of dementia are acquired disabilities? Not to, denies us all equal access to the CRPD and other human rights treaties and conventions, as other persons living with disabilities.
• Are people newly diagnosed with dementia still being prescribed disengagement, instead of being suported to live positively? The ADI 2022 World Alzheimers Report suggests they are.
• Is the stigma reported by people with dementia and their families still prevalent?
• Do people with dementia still experience discrimination?
• Do people with dementia receive adequate post diagnosistic support?
• Do family members and care partners receive adequate support in their unpaid, 24/7 roles?
• Are people with dementia referred to proactive rehabilitation services for their acquired disabilities, soon after diagnosis?
• Do people with dementia get paid equally, if at all, for their time and expertise?
• Are the health care professionals and other staff working in community or residential care adequately educated in dementia? Indeed, it is hard to believe they are not… Just imagine the outrage if untrained staff were employed in the accounting or department of any organisation, or in the stroke or orthopaedic ward of a hospital!!!
• Do people with dementia still experience violence, abuse and neglect in community or residential care? The Final Report from the Royal Commission into Aged Care Quality and Safety proved they do. Multiple, regular media outlets continue to report it is still happening.
• When living in residential care, are the majority of people there being institutionalised and segregated?
• Are people living in residential care too often, chemically restrained?
• Have any of the dementia friendly initiatives (DFI’s) made any positive, evidence based, positive changes to people with dementia or their families and care partners?
• Have the DFI’s reduced the stigma, isolation, exclusion, accessibility, or discrimination?
• Is just another National Dementia Plan target going to fix these things? Maybe in the 22nd century, but I canot see it happening in my lifetime, or that of my children.

I’ve no doubt, doing nothing would also fail us, but surely, we need to review and revise how we are searching for answers to very real problems, that will actually ensure tangible change?

Thank goodness, I was born an optimist…

Ps. If anyone can send me proof that things have changed, with evidence based research, please send it to me, as I’d truly love to be able to write about something positive for a change.

Curious…