Tag Archives: Dementia Australia

Young onset dementia: identifying the signs and diagnosis must dos

Earlier this year, one of our members, Natalie Ives from Melbourne presented at the Australian Young Onset Dementia Special Interest Group’s first webinar. Unfortunately, due to an IT issue on the day, it was not recorded well enough to upload tp YouTube, but Natalie has kindly agreed to share her full speech notes with us today.

Thank you Natalie.

Hi and welcome to todays webinar!

My name is Natalie ,I am a devoted mother of two daughters and a teacher by profession .

I am also an advocate and member for Dementia Alliance International, Dementia Australia, and the Australian Aphasia Association. Aside from these important roles, I love to travel; when we aren’t in lockdowns, as well as taking on different art projects in my spare time. 

I will now discuss how my loooooooooooooong journey began from raising my teenage  daughters , to now living with young onset dementia.

I first knew something was different with me when I would have trouble finding the right words to say, or think of them, especially when I had to fill out a form but couldn’t think of the right words.

Now this was different for me , as I had higher education and used to talk academically and writing essays relative ease.

The difficulty with my speech continued and I would start to use google or ask my girls for help when  I had word blanks.

Gradually ,I started noticing changes in my spacial awareness.

Crossing the road would sometimes be difficult as I would not be able to judge the right point of when to cross . Which my daughters would help me do. Now its funny how my girls had to tell me when to cross the road, as their mother , it was my job to teach them how, not the other way around!

This is when things started to look serious when we moved into our new home and I would start forgetting basic tasks liken how to use my phone or how to cook meals that I cooked effortlessly.

One day, my girls were out with friends during the summertimes I was home alone keeping out of the heat. I had put some eggs pan to boil to make sandwiches later , and that’s when I went blank. All I remember after that was my family friends hovering over me with the paramedics behind them.

I was told later on by family that I had called my daughters in a panic, unable to speak coherently and was not myself .I didn’t know my name or much else about myself at the time when the paramedics were looking at me.

Then I was taken to sunshine hospital and taken to a ward; the paramedics had suspected that I may have had a stroke, so the doctors looked into that .I was poked and prodded, taken up and down for scans to see what could have happened. All of this I don’t remember much, only what I have been told.

I was kept over night for supervision ,but released the following day.the doctors didn’t know what was wrong with me , and let me go with a referral to see a neurologist shortly after.

They said to come back to the hospital if anything should happen again.

unfortunately it did happen again, and I want back to hospital as instructed ,but they said nothing was wrong with me and that I wasted their time calling the ambulance. I was left in the emergency room for 6 hours and was given a script for epilepsy meds (as I found out from my GP)

My GP was supportive of me throughout the whole journey . I went to her to discuss what had happened at the hospital, and to find out if she could get some results from all the tests.

She called and found out that day I went to the hospital that first timer had brain swelling and was not told about it .

After all this all this, I felt alone. I felt. I wasn’t being Hurd or trusted by all these people who were supposed to help.even they didn’t believe at the time . Some of the doctors needed a course in sympathy  and effective communication with human beings .

Terms such as migraines and anxiety were thrown around by the doctors as an easy way of explaining what was wrong with me , since they didn’t know .the neurologist from before said I had mild cognitive impairment and that I should see a nuropsych .from that nothing was concrete .

I was referred to see a psychologist .

If that wasn’t enough the psychologist told me I shouldn’t be there as I wasn’t dealing with mental health issues.

I was left with no where to go 

I had to search by my self for a solution 

I went back to my GP to discuss all of the things that had happened, which was a wise move as she is a proactive doctor . 

I was now being looked after a medical profession who believed me and wanted to help.

The diagnosis of mild cognitive impairment was a umbrella term for dementia, or young onset in my case. A friend of mine with the same condition suggested I contact Dementia Australia ,which I am here with today. I have now been with them since 2019 and now I’m involved with Dementia Alliance International .

I’ve been able to find support I needed through the friendships I have built with people like me who have had a lived experience with dementia.

Recently on my journey I have been diagnosed with my speech pathologist with primary progressive aphasia ,which she said was quite clear from the initial phone call.

All these diagnoses have helped me understand what is going on with me.i finally feel herd and some of my concerns have been validated .which has  reduced my stress heaps .

This journey has been hard , but with the support of my family and friends; a few special doctors; dementia Australia and dementia alliance international ,I am able to embrace my new life living with dementia and aphasia .

From my lived experience, I have a want for change. I want other people who will go through what I have in the future to be supported by the medical community. Dementia and other related issues aren’t taught to doctors of medicine.i believe there needs to be education on these issues within the medical community, so others like me who had no idea what was wrong with them can feel heard and supported.

Please support more people like Natalie who live with dementia by donating to DAI today.

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Seasons Greetings

We wish everyone a safe and restful festive season, and a very happy and productive 2019. Thanks also for your support.

As we reflect on 2018, it is remarkable to think that at the end of this year, Dementia Alliance International (DAI) will be celebrating its fifth birthday.

From those early days of eight (8) founding members with dementia representing three countries, we have come a long way.  Most of all, we hope that our members gain strength and are empowered to live with a higher quality of life than they are told to expect, from knowing and meeting others also living with dementia.

For some members, DAI becomes a life long commitment and provider of support. For others it could be seen as a launch pad; one that helps them go back to living more positively with dementia. DAI is very proud of what we started, and what we continue to do, and sometimes in spite of varying difficult challenges and hurdles.

One of our mottos has always been, “onwards and upwards, in spite of the every increasing fog”, and we work to keep our vision, mission and values in sight, so that the hurdles of dementia don’t stop us from our work.

DAI was first set up as an advocacy and support group of, by and for people with dementia, to give us an authentic voice, and with the vision of “A world where people with dementia are valued and included.”.  

That is the uniqueness of DAI, as we do not have organisations or people without dementia telling us what to say or what to do. We are an autonomous group, with an autonomous voice, and although it can be difficult some days even to get dressed, together we are stronger. We can and we do achieve a lot, often with the direct support of each other, and by using a lot of low and high tech disability support.

In 2018, we have had a lot of new members join DAI, and there has been much activity locally, regionally, national and globally by members. We work collaboratively with national Alzheimer’s organisations as well as the emerging number of National and Regional Dementia Working Groups as requested. 

DAI is very proud to have recently partnered with Dementia Australia (DA), which you can read more about in our Media Release. They are the first national advocacy organisation in the world to have formally partnered with us. DAI is also pleased to have re partnered with Alzheimer’s Disease International, and are delighted the Taiwan Alzheimer’s Disease Association (TADA) have also given DAI a generous donation.

In 2019, we look forward to publishing our 2018 Annual Report, which will be full of the news about our many activities around the world, a number of reports, and the successes and goals we have reached this year. It will include the details of our recent Annual General Meeting.

We congratulate Dr Jennifer Bute on the recent release of her first book, Dementia from the Inside: A doctor’s personal journey of hope, available now. Wendy Mitchells book, first published in the UK earlier this year Somebody I Used to Know continues to inspire, and has now also been published into Japanese and Spanish. Congratulations Wendy. Many others with dementia have published books about their own experiences of dementia, and many of these authors, and others living with dementia continue to write regular blogs. 

DAI also congratulates Sarah Yeates, our long time and very loyal volunter, who works full time for Caladenia Dementia Care. Sarah has just been made their Chief Executive Officer, a very well deserved recognition of her ongoing committment and excellence.

Peter Berry and Lorayne Burgess from the UK (possibly other DAI members too) have been involved in a BBC documentary, based on proving to the world people with dementia are still employable. We congratulate them on this; as they have strenghened friendships, they have also helped changed attitudes about dementia. We also congratulate Mrs Helen Rochford-Brennan on her appointment as the new Chair of the European Working Group of people With Dementia, and on receiving her Honorary Doctorate from the NUI Galway.

DAI continues to make submissions to governments on our rights, on dementia plans,  on access to the CRPD, and on other matters, as they come up. The LEAD Coalition also makes reggular submissions, which DAI regularly co-signs to help strengthen their voice for change in the USA. The Older Persons Convention is still under review, and we are also working towards ensuring it is aligned to the CRPD, and in which we hope the final draft will reflect this as well as highlight dementia in its own right, as it deserves.

We are very proud to be Founding Members of the newly established Global Rehabilitation Alliance, which was launched in Geneva at the World Health Assembly this year. DAI is now also a formal member of the The Global Alliance for the Rights of Older People, who works with agencies seeking to promote and strengthen the rights of older people. 

The emergence of Dementia Working or Advisory Groups or Committees continues to strengthen; this is a list of the known Groups/Committees:

  • 2000: Dementia Advocacy Support Network International (DASNI)
  • 2002: Scottish Dementia Working Group (SDWG)
  • 2006: Alzheimer’s America Early-Stage Advisory Group (EAG)
  • 2012: Highlands Dementia Working Group (HDWG)
  • 2012: European People with Dementia Working Group (EUPDWG)
  • 2013: Dementia Australia Dementia Advisory Committee (DADAC)
  • 2013: Irish Dementia Working Group (IDWG)
  • 2014: Dementia Alliance International (DAI)
  • 2014: Japan Dementia Working Group (JDWG)
  • 2014: Southern (Kiama) Dementia Advisory Group  (DAG’s)
  • 2014: NZ Dementia Advisory Committee (NZDAC)
  • 2015: Ontario Dementia Advisory Group (ODAG)
  • 2016: Dementia Advocacy Awareness Team (DAAT)
  • 2017: 3 Nations Dementia Working Group (3NDWG)

It is also important to note countries including Taiwan and Singapore are working towards launching their own DWG’s in 2019, and there is a continuing emergence of self-advocates in countries like this primarily due to the work of DAI and also ADI members, now determined to empower and enable the inclusion of people with dementia in their own countries.

Finally, we thank everyone who has sponsored us, or donated to us, as without your generosity, we could not continue to provide the current and new services we provide to our members.

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