It is September, which in the world of dementia advocacy, is referred to as World Alzheimer’s Month or Dementia Awareness Month (DAM), or even World Dementia Month. This name change has come about, to ensure inclusion of those who do not have a diagnosis of Alzheimer’s disease, but some other kind of dementia.

It is also a month where historically I have posted almost daily blogs here, and this is my first blog for September, as I have almost lost my mojo…

Anyway, for my first DAM blog, I have included a cartoon as it really resonated with me when I saw it a few months ago. I very often feel like I am constantly banging my head against the proverbial brick world in so many areas of my work and campaigning for tangible change, change that actually makes a difference to the real lives of real people living with dementia.

Some people in the world are fixated on finding a cure; many are also fixated on the 20th century view and ‘treatment’ of people living with dementia. I like to be involved in research on topics like the list below, and in thinking outside of the box. I sincerely believe we need to, if we want things to change.

We cannot keep doing what we’ve always done, or, we risk getting what we’ve always got… we really must change our thinking, and our attitudes to improve outcomes, and we must move away from the embedded nihilism, paternalism and reductionism.

Hence, no matter how often I have to bang my head against a brick wall, I will continue to work on research projects, or articles with a focus on:

1. Improving the diagnostic experience
2. Improving post diagnosistc care, including moving from Prescribed Disengagement®
3. Moving away from the harmful term known as BPSD
4. Human Rights in dementia and aged care
5. Dementia viewed and supported as a disability for ALL people with dementia, not just those with young onset dementia
6. Rehabilitation for ALL people with dementia, not just those with young onset dementia
7. Equal access to the CRPD and other Conventions

The research that is very focused on a cure, or on finding disease modifying drugs, as we have for health conditions such as heart disease or diabetes, is of course, a noble pursuit.

Of course a cure would be great, but I believe thinking we will ever have a world without dementia is a totally daft idea.

Hence, I really dislike the strapline “A world without dementia” used by some fo the big dementia charities.

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A few articles and submissons of interest on human right in residential aged and dementia care (sorry I havenot got all the links):

Ending Confinement and Segregation: Barriers to Realising Human rights in the Everyday Lives of People Living with Dementia in Residential Aged Care, Steele L, Carr R, Swaffer K, Phillipson L, Fleming R (2020)

Human Rights and Confinement of People Living with Dementia in Care Homes, Steele L, Carr R, Swaffer K, Phillipson L, Fleming R (2020)

Submission on Human Rights of People Living with Dementia in Residential Aged Care Facilities to the Royal Commission into Aged Care Quality and Safety (2020)

Submission on People Living with Dementia in Residential Aged Care Facilities to the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2020)

Human Rights forPeople Living with Dementia: An Australian Anthology, Edited by Linda Steele, Kate Swaffer, Lyn Phillipson and Richard Fleming (2019)

Submission / Witness Statement to the Royal Commission into Aged Care Quality and Safety, Kate Swaffer (2019)