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Find out more about news and upcoming events below.

Did you know that there are currently 15,000 people with dementia in the greater Auckland region – and that this number is expected to double over the next 15 to 20 years?

Get Together For Dementia is an easy way for people across Auckland throughout the month of September to support people living with dementia in our community. Why not hold a morning tea at your work place, rest home or club where everyone brings a plate and makes a donation? Or have a dress-up day in the office, have everyone make a $10 donation and give out prizes for best (or worst) dressed.



Create a fundraising event to suit you!

1) REGISTER – Sign up and we'll send you a free fundraising pack with tea, coffee and other goodies to help you make the most of your event. 

2) PLAN – Whether it is a shared lunch or morning tea, mufti-day, trivia night or simply a cuppa with some friends, get planning and start inviting!

3) FUNDRAISE – Set a fundraising goal for your event – whether your fundraising goal is $50 or $5,000, every bit helps! Send the link to your friends and colleagues.

4) HAVE FUN – Know that you are helping provide specialised services FREE of charge to people with dementia right across Auckland.

It's an easy way to make a difference in your community – thanks for your helping us to support people living with dementia by holding a Get Together For Dementia event.

Register now.

My wife Amrita and I were living in Qatar with our son Sanesh when the first warning signs started appearing in Amrita’s behaviour. She began demonstrating some eccentric ways of thinking, and would do things like wear her clothes inside out.
 
Amrita is a music teacher by trade, and taught at international schools in a range of different countries. After Qatar, we moved on to Shanghai, where the realisation set in that something was wrong… but blood tests and x-rays all came back fine.
 
But the sense that maybe it was something that perhaps wouldn’t be found in those sorts of tests came to us after an evening out for drinks with friends. Amrita asked the same person the same question five or six times. Our friend thought she was just tipsy – but we realised something else was amiss since she hadn’t had more than two drinks, so we booked in to see a neurologist.
 
The initial perspective from medical staff in Shanghai was that she couldn’t have Alzheimer’s because of her age and the fact that she was still able to play complex music on the piano. We returned to New Zealand and visited a GP; within minutes they performed a test and confirmed our worst fear – Amrita had Alzheimer’s.
 
It was 2015. We returned to Shanghai, and Amrita attempted to go back to her classroom role, but ultimately had to resign, which was a huge blow for her – she had been teaching for 33 years! Coming back to New Zealand, she was still keen to continue teaching if possible, but again, the deck was stacked against her and she wasn’t able to start the role she was initially offered.
 
Our battle began. With support from WINZ and Dementia Auckland, however, we started to make progress. The CST (Cognitive Stimulation Therapy) programme was a major breakthrough, and I was thrilled to see some real change in Amrita and the
others in her group. Harnessing her love of music has also been important, with plenty of opportunities provided for her to play the piano – whether at home, at retirement centres or at the Papakura Salvation Army, where she volunteers, or a Toastmasters meeting that she attends every second Thursday. It’s just amazing to see her remember her old favourites, and see how her music touches other people too. Sharing music is a way of helping her and helping others too.
 
Sanesh, our son, was 15 when Amrita’s symptoms started really developing. He’s now at university and has continued to be amazingly strong and supportive throughout this journey. Before we did this years Walk for Dementia, he even shared a short piece about Amrita’s battle on Facebook, the first time that we had shared anything about it with anyone other than close friends and family. There was an outpouring of support and love; ultimately we had about 30 people walking with us on the day, and donations came in from friends and family around the world. 
 
Being open about Amrita’s dementia has helped a great deal – and has allowed us to see that you can live with dementia and still live your life. It has been a huge learning curve for us all, but by sharing our story, we know we can help others, and one another.
 
Register to take part in Get Together For Dementia so we can help more people living with dementia in our community like Amrita.

Dementia is something that affects so many of us – in fact, research shows that two out of three Kiwis will be affected by dementia in their lifetimes.

And yet, so often, we’re afraid to talk about it. People in the early stages of dementia don’t want to tell others that they have it, and people whose partners or parents are showing signs of dementia may remain in denial about it for some time. Dementia can be so isolating – not least because it’s rare to hear much about it!

The 2018 Dementia Auckland Symposium is being held on Sunday 19 August at Waipuna Hotel & Conference Centre, and with a theme of 'Let's Talk About Dementia', it's sure to be a good one, helping us lift the shame and stigma of dementia so that people can talk more freely about this common condition and the ways it can be managed.

Every year the Symposium is a must for anyone who is affected by dementia in any way, and this year is no exception, with fantastic speakers sharing their expertise and research around dementia. 

Don't miss out – register now by emailing Courtney on . Entry is via koha.

We would like to say a huge thank you to all of our volunteers and generous members of the public who contributed to our Annual Countdown Appeal from 28th June - 1st July. Hundreds of volunteers hit the streets (well, hit the supermarket...) in order to collect money on our behalf, and did an amazing job at engaging with the community. This year also saw our first year using 'Tap & Go' machines to collect PayWave donations, which we received fantastic feedback on. No more 'no cash' excuses!

We are delighted to announce that we raised $23,704 – an incredible result.

This money will help us to continue to deliver free services to people living with dementia and their families across the wider Auckland region.

As someone who has always been a hard worker, the last thing Ken Sims wanted to do when he retired was sit at home and “become a cucumber or a couch potato.”

To try and stay active, Ken had a browse online for volunteer jobs available and found a listing seeking a part-time driver for someone with Alzheimer’s. Although he’d had limited exposure to dementia previously, a friend of his with dementia had recently passed away. Ken also suspects that his grandfather may have had dementia, but this was during an era where symptoms of what we now know to be dementia were simply chalked up to someone “being senile.”

With these prior experiences with dementia in mind, the driver job appealed to Ken and he thought it would be a worthy cause to be involved with. It wasn’t long after putting his name forward that Ken found himself volunteering three days a week, signing up for a range of activities to support people with dementia, including volunteering with walking groups in Blockhouse Bay, One Tree Hill (now disbanded) and now Henderson.

Whilst very satisfying, Ken has found that helping out with people who have dementia can be emotionally challenging. “The sad fact with dementia is that there’s decline all the time,” Ken laments. “It can be quite emotionally draining seeing it happen to someone you’ve known for two or three years.”

However, Ken’s happy that his contributions have helped people with dementia to live well with dementia and maintain a healthy lifestyle. He’s noticed that some people with dementia can become quite withdrawn, so the walking groups he’s involved with finish with a chat over a cup of coffee – giving everyone the chance to socialise.

Though many have benefited from Ken’s volunteering, he has also found his contributions very rewarding on a personal level. “It gets me out and about, I get to see things through other people’s eyes. We talk about all sorts of situations, things we see on the news – even politics occasionally!” Ken takes immense pride in hearing feedback from partners of some of the people with dementia for whom he volunteers, telling him about how they value the friendship he’s made with them. 

It’s obvious that volunteering is a rewarding experience for Ken; one can only imagine how grateful the people Ken has supported are for his service!

 

Our Countdown Annual Appeal is just around the corner, taking place over the final weekend in June. Each year, this appeal helps raise thousands of dollars for Dementia Auckland – donations which allow us to continue helping people with dementia across New Zealand’s largest city.

A fundraiser as large as this one can only be successful with the support of volunteers from all over Auckland. You don’t need superpowers to be our hero; just a couple of hours of your time and a cheerful smile can help raise the funds we need to keep supporting Aucklanders. We have had a lot of assistance in the past from people who have benefited from our work in the community. 

Richard says “Having watched Gran suffer with dementia and the stresses put on Mum looking after her, I wanted to do something to help others with in the same situation. Not only for those with the disease but also the families and carers affected. What if that $5 collected in that extra 10 minutes helps train someone to better look after their elderly parent? It's all worthwhile, always.”

Last year our amazing volunteers raised thousands of dollars that provide much-needed keyworker support. With that money we were able to help out people like Richard and their families. This year, hundreds of volunteers will be out collecting on our behalf from Thursday June 28 – Sunday July 1.

Make sure you say hi to our amazing volunteers while they’re out and about next weekend – and if you haven’t signed up to volunteer yet, we may still have a few spots that need filling! Contact if you can help.

     

 

 

At Dementia Auckland, we’re lucky to have the support of some fantastic and knowledgeable people – among them, Angela Caughey. Having been supported by Dementia Auckland during her husband’s long time living with Lewy body dementia (LBD), Angela now gives back to the organisation with not just her time, but also the proceeds from her books about dealing with dementia.

Her first book, Dealing Daily with Dementia, was extremely popular among carers looking for practical, real-life advice. Her follow-up book, which launched on Thursday May 10th, dives into how to communicate with someone living with dementia.

“I had worked in marriage guidance for many years and we’d studied communication,” shares Angela. “It is immensely complicated – an enormous amount of it isn’t even talking, it’s body language so that communicating with someone who has dementia can be extremely challenging.”

Her publisher asked her to put together a book focusing on communication, thinking the book might take two months to put together. 22 months later, after much work by the two of them, it was finally finished!

“The challenge was knowing what to put first – how to speak effectively, how to listen sensitively, how to interpret body language.

“The book covers all stages – for family members, spouses, and professional carers. A point made early on is that sometimes you end up having to care for someone you don’t always like. They can be difficult and can turn you off. As a carer, you have to take on the role of a hospital nurse – loving, cheerful, and kind. You roleplay every day when taking care of someone with dementia.”

Angela’s top tips for communication include:

  • Keep questions to a minimum
  • Use positive language, not negative language
  • Respect the person who has dementia
  • Avoid correcting them, and avoid using figures of speech (saying ‘hop in the car and we’ll hit the road’ can be very confusing to someone who has forgotten what those colloquialisms mean)
  • Allow for pauses in conversation – sometimes they just need a little time to get their brain into action
  • Be aware of the person you’re communicating with. Watch them: their body language, posture, facial expression, and especially their eyes.

‘How to communicate with someone who has dementia: A guide for carers’ is a hugely valuable book with an immense amount of practical guidance for carers of people with dementia. Not only will it help you significantly improve the way you communicate with people who have dementia, but royalties from sales of the book will come directly to Dementia Auckland.

 

Please order your copy directly from Calico Publishing
RRP $35 + $5 delivery in New Zealand
Email: 
Phone: 09 624 5674
Website: http://calicopublishing.co.nz/book/communicate-someone-dementia/

 

Prior to 2007, Paul Cassidy knew very little about dementia. His experience was limited to the sort of things you pick up watching TV and reading magazine articles – knowledge you absorb without really intending to. This all changed when, in the space of a few years, both Paul’s mum and dad developed dementia.

The varying onsets of dementia

Paul, originally from the UK, was living in Amsterdam when his mother, Orita, suffered an unexpected stroke in 2007. Orita had always been a mentally very sharp woman and although Paul recalls that she initially had still seemed quite “with it” after the stroke, he and his family noticed that she had started to say odd things from time to time. A second stroke and a dementia diagnosis followed soon after, at which point she started to age rapidly in Paul’s eyes. Orita sadly passed away in 2010.

Though Paul’s mum’s dementia came along suddenly, the opposite was true for his dad, Colm. It was during his mother’s final years that Paul ,and his sister Sharon, began to understand dementia more and recognised some signs of it in their father. Colm worked as a taxi driver in Kent, England, and prided himself on his knowledge of the local roads. It came as a surprise to Paul when Colm requested a voice recorder – so that he could record instructions from the dispatcher, and a Sat Nav GPS. It was small things like these that, although seemingly innocuous, were all signs of things to come.

Though it was evident to Paul and his family that something was happening to Colm, most outside observers would rarely notice any changes. Like his wife, Colm started to say things that were out of place and his memory would sometimes lapse, but otherwise he was absolutely fine most of the time. Unfortunately these small disruptions were enough to make life tricky for Colm.

A change in independence

From a young age, Colm had been fiercely independent, leaving his home in Ireland at 11 to start earning a living. Understandably, he wasn’t comfortable with any sort of dementia diagnosis – he didn’t want to lose the independence he’d valued for so long, which made things difficult for Paul and the rest of the family. Even something as simple as going for a walk around the block could be a challenge for Colm. 9 times out of 10 he would have no issues, but on that tenth occasion Colm could completely forget how to get home – even though he’d walked the streets many times before. As Colm baulked at the idea that his memory was failing him, it was tough for Paul and his sister to prevent this problem. Going through directions a number of times didn’t ease the issue, so they had to settle on an alternative: “We hid a card with dad’s address in his wallet, in case someone found him looking lost”.

Though Colm has somewhat come to terms with his diagnosis now, life still has just as many challenges: “Dad can sometimes run into someone in the street who recognises him, but he has no clue who they are.” It’s events like these that have put a dent in Colm’s confidence – things he used to find trivial can now be exceptionally challenging. Paul has found that people are very understanding of Colm’s condition, but that doesn’t mean Colm likes to share it with other people; he still finds it somewhat embarrassing. This embarrassment has caused Colm to withdraw from a variety of social events. Although Colm has been willing to go out with Paul, his family, and some of his closest friends, he finds it tough to socialise with others who he isn’t quite as close with – though that doesn’t stop him from popping down to the pub at lunch to have a meal with some of his mates.

Helping people with dementia to live well

Paul and his wife, Dorothy, were on the cusp of moving to New Zealand from Amsterdam in 2007 but put off their move due to Orita’s stroke. They remained in the Netherlands and visited home as often as they could, but also did little things to help raise money for dementia organisations. Dorothy would make a lot of craft objects, and sell them at craft markets to raise money, and they even used the Queen’s Day holiday in Amsterdam, to set up a stall outside their apartment. The money would go to various dementia and Alzheimer charities in the UK.

A few years later, after Orita had passed away, a new job opportunity meant that Paul and Dorothy once again had the chance to relocate to New Zealand. With Dad's condition, they were unsure whether they could go, but since he had moved closer to Paul's sister, with her support they were able to make the move and departed the Northern Hemisphere and set up in Auckland.

Paul and Dorothy have continued to make a difference to others with dementia since moving to New Zealand. Recently Paul set up a Give A Little page to raise money for Dementia Auckland, completing a five kilometre fun run in Orewa in exchange for donations. “I’ve never been the most active person in the office”, laughs Paul, which probably contributed to how he was able to raise almost $300.

New challenges from afar

Living on the other side of the world and trying to communicate with your relatives can be hard enough for the average person, but the difficulties of the situation are magnified when one of those relatives has dementia.

Like many, Paul and his dad communicate frequently via Skype. Whilst talking your parents through logging into their account and setting up a call can be a struggle for everyone, these issues crop up more regularly for Paul. Operating a computer or tablet can be challenging at the best of times, and sometimes Paul needs to ask his sister to pop over to his dad’s place to fix up the tablet – luckily she lives just around the corner from Colm. For a long period of time, Paul’s dad was able to use a customised tablet which only had Skype installed, which was very easy for him to navigate: “Dad just had to turn the tablet on and click on my picture to call me.” Sadly, the company that produced these stripped-back tablets has ceased trading, but Paul and Colm still manage. 

Since the onset of dementia, Paul and his sister’s relationship with his dad has flipped completely. Whilst Colm was once the guardian in the relationship, now they have to make the decisions concerning what’s best for their dad. The only difference, as Paul wryly amends, is that “children will automatically accept their parent’s authority” – something Colm isn’t quite yet ready for!

It’s time for our Countdown Annual Appeal once again, which is coming up at the end of June. Each year, this appeal helps raise thousands of dollars for Dementia Auckland – donations which allow us to continue helping people with dementia across New Zealand’s largest city. 

A fundraiser as large as this one relies on the power of volunteers from all over Auckland. You don’t need superpowers to be our hero; just a couple of spare hours and a friendly smile can help raise the funds we need to keep going. Are you in Auckland and interested in being a volunteer for people with dementia and Alzheimer's?

Janet – Volunteer for the Dementia Auckland Countdown Appeal

 

“My husband had vascular dementia and Dementia Auckland was wonderful. I so much appreciate and valued all the support and encouragement and information and understanding that we received while Charles was coping with the dementia. I’m more than happy to collect – it’s one way I can support the ongoing work that supports other people who find themselves in the same place we did.”

Being part of our valued volunteer collector family enables Dementia Auckland to help people like Janet and Charles get the support they need. Last year our amazing volunteers raised thousands of dollars that provide much-needed keyworker support. That's why Janet's collecting – why will you?

Can you offer 2 hours of your time at your local Countdown across Auckland between June 28-July 1st? If you or anyone you know can collect, please get in touch with Courtney on or 09 551 2100.

 

Volunteers across Auckland give up two hours of their time during the Dementia Auckland Countdown Appeal