Dicing with Dementia…My Personal Story

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2017 Dementia Dignity Quiz – Pick The Odd One Out

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I googled the word ‘Princess Chair’ and the below images are the result .

The upcoming dementia conference is themed ‘Be the Change’. Well I am going to get the ball rolling by highlighting the term ‘Princess Chair’ as item #1.

How undignified and degrading for both men and women to be placed in a ‘Princess Chair’. To me this conjures up an outdated and disrespectful term that is simply undignified.

How about we call it a ‘ Comfort Chair’ until someone comes up with a better term?

#bantheprincesschair

Meet & Greet – National Dementia Conference (Melb)

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Are you attending the Dementia Conference? ….Please join us Tuesday in the Lobby Bar at The Crowne Plaza Hotel (Near Reception).

Sarah Ashton and I thought it would be a nice idea to catch up with ‘DD’ Members for a quick chat the night before. Feel free to pop in and say ‘hello’ or stay longer and have a coffee or drink. (It is always good to know someone at the conferences).

 

Dementia in Prison

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Dementia is really difficult… full stop. Imagine you were in prison and not only trying to survive amongst a very tough culture, but having to deal with the symptoms of dementia as well?

A Valuable Lesson in Humanity

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I was at a breakfast function recently and I had the difficult decision to make about where to seat myself in the room of 50 people. I knew many people at the function, but something inside me said to sit with someone I normally wouldn’t. I saw an older lady with no eyebrows, wearing a headscarf sitting by herself. I was drawn to her and I had a feeling I would learn something from her.

The lady obviously had cancer and I would normally baulk at this situation as I know very little about cancer, I also thought she may want to be by herself, or the conversation could be ‘heavy’. I was feeling brave so I went up to her and asked if she would mind if I sat with her. She warmly said “of course, please do…I am Merri”.

We had some small talk for a few minutes and then I asked the following question “So tell me about your background Merri?”. Without hesitation Merri started to rattle off about her ovarian cancer and how long she has had it etc. I said to Merri “I am not asking about your cancer, I want to know WHO YOU ARE?”. She gave me this stunned look and she appeared to be lost for words. I had no idea what was about to happen next…..

Merri’s eyes began to fill up with tears and she said the following “This is the first time I have cried since my diagnosis”. The reason why she was crying was because she has been conditioned to have her cancer define her as a person. The first thing people ask her about is her illness because the scarf is a talking point. Merri had lost who she was as a person and was used to people feeling sorry for her, so she would always offer a positive spin on her condition to make them feel comfortable. I felt incredibly sorry for her, but I thought it was more important to not state the obvious and just ‘have a chat’.

Merri is very well educated, and a passionate former environmental lobbyist. Merri taught me all about what a lobbyist does and the best ways to influence the people in power (politicians). I told her that I hate politics and I don’t like people who only do things for popularity or votes. Merri said to me “If you want to change a culture you need to get in this space. Politicians are just normal people behind closed doors, you just need to find the best way to influence them, and have a determination to not give up”. Wise words indeed that certainly made me ponder.

Merri has given up her job as she has only one more round of chemo before she dies next month. I was so honoured to spend a small moment in time with someone who is about to leave this world. What do you say to someone who knows they are dying and even the actual time frame they are to depart?

I decided to ask her how she intends to spend her last month? Merri told me (almost apologetically) that she doesn’t have time for the crusade to advocate to help others. She has chosen to spend as much time as she can with her family just talking about good times and reminiscing. Merri encouraged me to keep fighting for people with dementia and she has a good feeling that things with dementia care will improve.

My time with Merri was almost over as she had to leave. I was compelled to ask Merri for a hug as there was something magical about our conversation. She reached out to me and gave me her ‘positive energy’ and I sincerely thank her for the valuable lesson and amazing chat.

“Thank you Merri… It was a pleasure to meet you”…..

Dementia Conference 2017- Here We Come

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For those of you that know me well, will know that this has been a really challenging year for me on multiple fronts. But what has happened today has simply taken my breath away.

I need to share what happened…. as per usual it is a ‘rollercoaster’ of events for me. I recently submitted two abstracts to present at the Dementia Conference in Melbourne in October. Unfortunately I was not successful as there was not enough room in the program to accommodate me.

I was then kindly offered the opportunity to create a digital poster of my submission.

Then late today I was advised that Alzheimer’s Australia have kindly offered to provide me with flights, accommodation and conference registration to attend the Conference in Melbourne……WOW!

I want to sincerely thank Alzheimer’s Australia for investing their funds in me to allow me to learn and share some of the new findings about dementia care from Australia and Overseas.

Thank you also to everyone on ‘Dementia Downunder’ for your support and kindness.

The Conference will be fantastic and I would love to see as many of you attend as possible. For those of you on Twitter stay in touch with the conference via#bethechange2017.

PS – September is Dementia Awareness Month so stay in touch with all things dementia via the hashtag
#dementia2017
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Community Achievement Award 2017…This one is for Dad

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OMG!….Am blown away today…..I have just found out that I am a semi finalist in the SA Community Achievement Awards 2017 – ‘Carers SA Carer Achievement Award’.

I am really humbled and proud to be nominated and be amongst the finalists for the last round of judging happening real soon. This award is dedicated to my dad who inspired me for a lifetime.

Whilst ‘Dementia Downunder’ is not about awards and accolades, the real reward for me is sharing your stories, removing the stigma about dementia and creating culture change.

Awards dinners are fantastic opportunities to spread the good word about ‘DD’ and get dementia care back on the agenda!

Time to get the best available care for our most vulnerable members of our community.

Bring it on!

#SACAA

Consumer Guidelines Video ….Out Now!

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Very proud of Louise Heuzenroeder and her work with the consumer guidelines. Louise has created a video and a valuable document that makes things easier for consumers to navigate the care of a person with dementia.

The consumer companion guide entitled – ‘Diagnosis, treatment and care for people with dementia: A consumer companion guide’ has been developed for members of the public to complement the Clinical Practice Guidelines and Principles of Care for People with Dementia.

The pic above features Dementia Champion Louise Heuzenroeder and Dementia Advocate Ian Gladstone.

Click the link below to view the video (it may be slow to load). ‘Dementia Downunder’ is represented at the end of the video.

http://sydney.edu.au/…/cd…/resources/dementia-guidelines.php

Dementia Care 2017 & Beyond…..My Blueprint for Positive Change

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*Warning – The following post contains my own personal opinions on dementia care in 2017 and beyond. It is not intended to be disrespectful to anyone but more so spark ideas and some action in the community. Is this post emotional and created without complete knowledge of the politics and every single aspect?…Absolutely!…. Dementia is important…Dementia is different….and with me….. “It’s Personal!”.

The Blueprint:

• Government to acknowledge and address the growing tsunami of people with dementia and allocate adequate funding and resources to match.

• All hospitals to consider new pathways into the ED (Emergency Dept in Hospital) for older persons and especially those with dementia. Lighting, sound, environment, staff training all to be considered.

• Set up a Dementia Taskforce in each state to plan for the future, and have strategies and initiatives being discussed NOW.

• Have strategies to reduce ‘Code Blacks’ and have restraint as a last option, not a first option.

• Create purpose built dementia related facilities to cater for people with BPSD and other difficult conditions that cannot be handled by aged care facilities. (similar to Ward 18 and GEM units)

• Research for a cure is really important but so is managing the 400,000+ people already with dementia in Australia. Maybe the funding allocation for caring versus research should be reviewed? (I am not across the %’s here)

• Acknowledge and start genuinely caring for people under 65 of years age with dementia (younger onset dementia) and have age appropriate facilities for them in a central location (in four directions may be a bit unrealistic at this stage). The facility environment should be conducive to younger people and the person with dementia be considered with every single decision. No more people under 65 with dementia being placed in nursing homes.

• Aged care facilities to allocate their most passionate and best qualified carers to the people with dementia requiring the most care. Eg BPSD, Stage 5,6,7, and those in Memory Support Units. These people are so vulnerable and need the best care we can provide from those who want to be caring in that space.

• Media is to be encouraged to no longer promote false hope for families and stop writing about snake oil cures and listing off things that ‘may’ help with dementia. If there is no actual proof that something works, then it is not news.
• Encourage real life stories and personal accounts to be published in the media to create awareness. The ‘lived experience’ is really powerful and cuts through as it is genuine and sincere and demonstrates the hardship on a grass roots level.

• Our security teams in hospitals and dementia related facilities to have extensive ‘dementia specific’ training and formulate a different protocol for handling people with dementia.

• Stricter rules on ‘driving with dementia’ – The declines can happen rapidly and someone who is driving ok this week can end up driving through a shop window the next. This could save lives.

• Disabled toilets and bathrooms to cater for ‘people with dementia’ (and their caregivers) equally to other disabilities. Eg. space & equipment for carers within bathroom, appropriate and dignified signage etc

• Public spaces eg parks/playgrounds could all become ‘Care Parks/Playgrounds’ (or something similar) and facilitate everyone with a disability or cognitive impairment. One standard policy that covers everyone. We should all be considered and treated equally.

• Dementia will eventually be the no.1 leading cause of death in Australia (currently 2nd)….We need to prepare NOW.

Outdated Disability Signage….A Sign of The Times?

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I have been thinking about current signage for people with disabilities and I believe it’s about time for a review or better still an overhaul. Our airports, shopping centres and the like use ‘the wheelchair’ as a generic symbol to represent disability.

My point is that ‘not all disabilities are visible’ and is the wheelchair symbol relevant in our complex and diverse modern world? What about people with cancer, down syndrome, diabetes, dementia and the list goes on. I certainly am not downplaying or discriminating against people in wheelchairs but moreso calling for a positive and unified NATIONAL SYMBOL that encompasses anyone requiring ‘extra assistance’.

While we are at it….. the word ‘disability’ is so condescending and immediately puts people on a lower rung. We must treat everyone with respect and dignity, and here would be a great place to start.

I remember in the 80’s when businesses were rapidly installing the long overdue wheelchair access ramps and rails etc, but times have changed and so have the requirements. The amount of people with dementia is rapidly rising and with no cure and constantly diminishing funding something is going to give.

Wouldn’t it be great if our councils, charities and service providers could work together towards common goals such as parks and playgrounds that combine relevant equipment, signage, fencing, pathways and most importantly bathroom facilities. Perhaps we should call them ‘Care Playgrounds’ and ‘Care Parks’ and have an ‘all inclusive’ mindset where all people are considered in the planning? Combine funding to build better quality facilities and get better results may be a better option also?

I have heard about some airports calling their disabled toilets ‘Accessible Toilets’ which is a positive step forward in the interim…but can we do better than this?

Our airports now offer ‘prayer rooms’, wouldn’t it be great to have several accessible ‘quiet rooms’ for whoever needs them? Knowing the requirements of people with dementia this would certainly be a better use of resources amongst a busy and confusing environment, and once again be ‘all inclusive’.

Brisbane airport is leading the charge with training programs, signage changes, and more overall awareness. Let’s hope we can extend the push into other areas and start looking after everyone equally. The Hills Councils, Community and Dementia Workgroup are working on a Dementia Friendly Park in Mt Barker as well.

Something to certainly ponder….

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