A Dog’s Breakfast – Plenary Address to 31st ADI Conference.

The following represents my short plenary I address I have privileged to give on Day 2 of the 31st Annual Alzheimer’s Disease International Conference in Budapest. The accompanying PowerPoint Slides  references and slides have been omitted.

A Dogs Breakfast

Plenary Address on 23 April 2016, for the second day of the 31st International Conference of Alzheimer’s Disease International at Budapest Congress Centre, Hungary.

Note: Accompanying PowerPoint Slide references have been removed.

Acknowledgement of Country

I would like to show my respect and acknowledge the traditional custodians of this land, of elders past and present, and ask for their understanding if it transgress their lore’s and traditions. For if I do so it is out of ignorance, not intent.

I would also like to thank ADI for this opportunity and the work that is done globally, and also Dementia Alliance International (DAI) for their global voice in advocating for all of us with a dementia.


I would like to dedicate this presentation to my Mother and all the countless others who have died as a result of dementia, and to the other 47 million of us who probable will also die as a result of our dementia.

A Dogs Breakfast

This morning I would like to cover the following points:

  • My experience of living with Dementia
  • My Observations of how we are treated
  • The importance of Language
  • Spending The Dementia Dollar
  • Kiama – Becoming a Dementia Inclusive Community.

The Importance of Language and Place

I would expect that if you have more than 2 functioning neurones, you may be a little taken back by what I have said thus far. I really wish to emphasis several points throughout this brief presentation. The first is the importance of language and the continuity of language for a person with dementia or any cognitive impairment. Language is evolving at a fast pace, the meaning of words change with time, with context, and with culture. As our neural networks unravel much of a forgotten past is released.

As two distinctly different examples of what I mean, who understands what I mean by a “Dogs Breakfast”? It may be a uniquely Australian term referring to a group of things that would not normally be together, grouped together seemingly randomly – much like a dogs breakfast made up of leftovers. Secondly If I called you a “rhombustuous psudosubduberating sprognosticating conundrum” would you take offence? I simple (and less eloquently) mean, you’re an interesting friend.

I now do not necessarily understand all of the current “social” language of my peers. As an example catching up recently with a group of people I have worked with for over 10 years, I could not easily understand the detail of the conversation. It literally didn’t make sense, and as a result I felt very much as an outsider.

Technology is similar. Because it’s new, it doesn’t mean it’s better. We should not adopt new technology because it is new, but because it meets a need, significantly better than the alternatives. Not because it bigger or smaller or shinier or just because it has an “I” in its name. As a person with dementia, adapting to new technology is very difficult and often involves the use of a hammer.

Place is important. Home is more than were the heart is. As a species we have a need to belong somewhere. As a person with dementia our “home” becomes more import. It should be a place of stability, of familiarity, of family and friends, and a nexus of our personal history. Australian Aborigines have a concept we call “Country”. A person’s country is not defined by artificial political constructs, but by shared cultural identities, shared spiritual beliefs and a shared sense of belonging. A European heritage analogy would be shared roots, though ones country is much more than ones roots. Country has a real and deep sense of belonging. We do not own “country” but are part of country, its custodians.

I do not claim Aboriginal ancestry, but I share their concept of country. As a person with dementia this connection to country is a stabilising influence and helps make sense of a changing personal environment. To have that link broken, by say being moved into an alien environment such as a residential care facility could be very traumatising.

Finally, before I begin let me add “we need humour”. For too long only the dark side of dementia has been displayed, it is “politically incorrect” to find humour in dementia. Indeed, I find nothing funny in dementia, but I do see the humorous side of life. Indeed “Life’s a Joke – Then you’re dead”. Humour can be a tool for acceptance and change, and as a person with dementia, I have given myself permission to take a “walk on the dark side” (Apologies to Lou Reed).

My Experience

“I COME NOT to FIGHT dementia, but to Embrace it!”

Some Background

Nine years ago my Mother was diagnosed with Dementia, shortly after her 90th Birthday. Her diagnosis was the result of one or more minor strokes, and as she lived alone we were advised that she be placed in residential care, pending a more “appropriate” dementia care place becoming available.  With heavy hearts, this we did, much to mums protests. We believed and were advised, that we were doing the best thing for her. She seemed to adjust well to care, after living alone and taking care of herself for forty years (with a little help from family and friends) it was a holiday. But after a few weeks of care she had a fall and broke her hip. She died as a result of inevitable complications.

Three years ago, after a year of pursuing a diagnoses I was diagnosed with semantic FrontoTemperal Dementia. This was a happy day, as I had a diagnosis – an explanation for the symptoms I have been experiencing. This was my chance to “retire early” and enjoy what was left of my life.

I began to find small challenges in everyday tasks, literally things just don’t feel the same. I no longer experience the world the way I used to.  It became easier to withdraw from much of the normal social activity I would normally participate in, than face the confrontation of “normal” social interactions.

Then, eighteen months ago I was invited to participate in a Dementia Friendly Kiama pilot project and had a chance to meet Kate Swaffer, a person with Dementia who encouraged my participation. I was elected as chair of the Dementia Advisory Group – DAG, and have been advocating locally for people with dementia since.

Last year, my oldest sister was diagnosed with a dementia at age 80. She too has moved into residential care, at a facility that is closer to her children and family that her home was. It appears to be one of the more enlightened facilities and she is enjoying life there. Earlier this month, one of the residents there found a shovel and attempted to dig an escape tunnel. He didn’t get very far in that his excavation was discovered very early. Sadly he attempted suicide two weeks later.

What this means – I don’t know. We are all individuals and are a product of our life experiences.

I am not un-intelligent and have been self-monitoring the changes I have experienced. I have found many of the clinical psychological/neurological tests to be mediocre and heavily culturally biased, and have spent much time in correcting the “examiners” thinking.

As an example the last quick test I did as part of an assessment for fitness to drive involves a sequence of numbers 1, 2, 3, 4, etc. and a sequence of letters A, B, C, D, etc. with the objective of joining the dots 1 to A to 2 to B etc. What it is attempting to assess is strait forward but it is biased against left handed people, as the sequence of joins is a clockwise spiral where if you a left handed you obscure the densest starting area of the spiral. I would imagine right handed people would statistically score better than left handed people.

I believe I have a 2 digit IQ è FF hexadecimal, and most of a “betters” and policy makers have a 3 digit IQ (Binary) è 111 and would be proud of it.

Dealing with the impact my symptoms have on me and my family is a challenge, but a minor challenge compared to dealing with the “social symptoms” and stigmas.

My Symptoms and Some Observations ( V – Voila! – Victim and Villain)

(NOTE: at this point I present from behind a mask of V -often associated with anonymous.)

I don’t normally recognise faces as I have a form of Prosopagnosia (face blindness). This is the “problem” that lead me to being diagnosed. I identify people by characteristics apart from their face. It’s their hair style, hair colour, their voice, their smell, clothing etc. and by the context of their location that I use to identify them. This “symptom” has led to a fortunate side effect. I believe I can recognise a genuine emotion in people, but false social platitudes all convey negative overtones. A genuine smile is welcoming, but a false “greeting” smile is threatening.

My sense of touch is “muffled”. By this I mean that it is almost impossible to feel fine detail on an object and I have challenges in holding many normal objects. Pain is sometimes masked or delayed, many times I have cut myself, not realising till an object slips from my fingers because of the blood.

My hearing is good in a controlled environment, but background noise – what most people consider as white noise – to me is Black Noise. As such I miss much of normal conversations because I can’t easily identify normal clues as to who is talking.

My sight is good. I can still identify a Kangaroo that is feeding on the side of the road and anticipate his intention to bounce out across my path. Put me in a room with inconsistent lighting- bright lights– deep shadows and large reflective surface and I am disoriented. I lose my balance.

My apparent sense of smell and taste have changed. Most vegetables taste bitter (indicating their poisonous intent). Red wine has lost is body, but more distressingly many perfumed environments make me nauseous.

On the good side, that bit of my brain that monitors the social appropriateness of my actions has been downgraded. This has freed up some of my thinking and allows me to interact with the world in ways I may not have before.

Indeed, combining this part of my neural degeneration with the freedom and clarity of thought that one develops after one has been given a terminal diagnosis does allow for insights into the world that lesser mortals fear.

What I Have Seen and Heard

When I refer to myself, my observations are personal, but resonate with everyone I know with a dementia.

The biggest hurdle I have had to overcome with my Dementia, (and I say this not just from personal experience, but from conversation with all my friends with a dementia) is not my symptoms but social attitudes to my symptoms. People with Dementia are actively socially isolated, and social stigmas continue to be enforced.  I have come to terms with my mortality and my attitude to my death has changed (my days are numbered and that number is 666). I am planning my funeral – a cremation. When I’m dropped on the final barbeque I would like to go out to the William Tell overture, and have ashes scattered from the Grand High Tops in the Warrumbungle Mountains, to Wagner’s “Ride of the Valkyrie”.

Our immortality is though our genes and the chain of memories we leave. One of my biggest fears, is that I will forget my parents and their stories of my grandparents, and the lives of those friends I have known over the years who are now dead. Breaking this chain of memory. Failing those who have gone before.

When my symptoms progress, if I find myself entrapped in a “care” unit I will consider it my duty to escape. Give me liberty or Give me death.

I am a child of the 60’s and the Protest Era. I hold the ideals of this time dearly and hold little reserve in pursing them.

What I face as a person with a dementia and what I become is as result of the interactions of the following:

  • My individual symptoms as they increase in impact and number;
  • How these symptoms affect me physically – i.e. altered sensory perceptions;
  • How a combination of some of these changes and the nature of having a terminal diagnosis breaks down a lot of the barriers to clear thought; and most significantly
  • How people choose to treat me and react to my symptoms.

What I Need

I would love to see a “magic bullet” cure, but I don’t expect that in my lifetime. What I experience from my degrading neural network is made worse by the stigma – the often culturally entrenched stereotyping and ill-considered negative reactions I receive. Today, nothing can be done to permanently arrest my symptoms. There is much than I do, do (a wonderful example of the impact of language) to slow the progress of my condition. The most significant of which is to maintain social engagement. A task that is very difficult because of the associated stigmas.

I have found significant change in people’s attitudes and willingness to accept and interact with me as our Dementia Friendly Community project advances in Kiama.  These changes are overwhelmingly positive and are making Kiama a more all-round inclusive community.

Where to Act or Do We “Care”

It is generally agreed that the longer a person with dementia can be support to remain “at home”, the better the outcomes for that person and their family, and the lower the financial cost to the community. Unfortunately, the traditional approach to people with dementia appears to be one of marginalisation, isolation, and incarceration then incineration. Indeed, it is easier to escape from a High Security Prison that it is to engage with the outside world from a “secure dementia unit”.

Fortunately, to quote Bob Dylan “The Times They Are A-Changing”. “Respite Care” and in home support are becoming real options, though my experience in Australia, shows these services difficult to negotiate, limited by mysterious quotas and then allocated by a lottery. The services may be good, but the process of access is often to traumatic to negotiate.

Governments need to act in a more proactive way. Unfortunately, the nature of the political beast is spend large amounts of money on “big shinny” projects that they can brand within their 3 to 4 year political life cycle. My belief is that if a relatively small amount of money can be spent at the local community level, great advancements in the wellbeing of people with dementia, other disabilities and marginalised groups can be made. This advancement is slow but grows widely on a day by day basis. It relies on some simple things often missing from the political thought process – long term commitment, compassion and mutual respect.

Kiama A Triumph

Approximately two years ago Kiama Council in collaboration with Alzheimer’s Australia and the University of Wollongong, began a pilot community based project to develop a Dementia Friendly Community. This project is succeeding, and is building a model that could be adapted in almost any community.

Its success and value lies in the inclusion of people with dementia in all aspects of the project. Its continued success and strength can be attributed largely to the following influence.

  • The size and nature of the Kiama Community.
    • The existing Age Friendly space that was implemented there
    • The geographic distribution of the population into 3 regional centres with a small outlying rural community, all up numbering about 20,000 people.
    • Proximity to the University of Wollongong (~30km)
  • The initial mentorship of Kate Swaffer a fellow person with dementia
  • The establishment of two groups The Dementia Alliance and the Dementia Advisory Group
  • The personal commitment and dedication of all the active members of the Alliance and Advisory groups.

The Dementia Advisory Group (DAGs)

This group is a major key to the project’s success. It is made up of people with dementia and their care partners, and the project co-ordinator. It meets monthly to review the progress of the project and to provide a conduit for input into the activities and direction of the alliance.  It ensures that the voice of those with dementia is heard and valued.

The Dementia Alliance

This group is an alliance of all interested bodies. It comprises representatives of the Council, The University of Wollongong, The DAGs, care bodies, Dementia Care workers, transport groups, local community and service groups and anyone who is interested.  The Alliance is informal and fluid. It re-organised itself to working groups as require to address tasks and objectives as they are defined.

One of the strong tenants that was adopted from its first meeting was the active involvement of people with dementia. Every promotional activity that they have undertaken has had a person with dementia involved. This has had a great impact on the community. It has presented the project as belonging to the community – people have seen recognisable faces that they know and commit to the project though a sense of joint ownership.


Representing the DAGs our shared experiences have identified the following:

  • an increase in our community involvement,
  • evidence of generational change, we are seeing young people actively engaging with us,
  • a lessoning of the social stigma,
  • a willingness for more business and community groups to engage with and assist us,
  • a decrease in social isolation
  • a greater understanding the community of what dementia is and its effects on us all,
  • a more inclusive and cohesive community
  • a feeling that these changes are not tokenistic and are becoming part of the fabric of the community, and
  • a sense of pride that we are doing something positive and a leading the way.

The Cost

To date the real monetary cost has been small. The project has employed one person working three days a week to co-ordinate activities. Venues for meetings (2 per month) have been provided by the council. Thus far costs have been covered by University research funds and Community Grants.

The other significant cost has been the time and commitment of all the project volunteers. Indeed it is the nature of the volunteer role that is a key to its success.

The Future

This project is aiming for long term change, and we are seeing that change occurring incrementally every day. Its success is the continued, progressive realisation of these changes.   We all believe that we are more likely to remain active in the community for far longer than we may have prior to this project.


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