FIGHTING ALZHEIMER’S FOR AUSTRALIA LIVING WITH DEMENTIA NEWSLETTER OF ALZHEIMER’S AUSTRALIA ACT DECEMBER 2014
ALZHEIMER’S AUSTRALIA ACT WORKING TO CREATE A DEMENTIA-FRIENDLY COMMUNITY
Dementia Awareness Month 2014 is over and Alzheimer’s ACT had a very successful month with education and awareness events, the Memory Walk&Jog and guest speaker, Steve Milton from the UK. Each September it is great to see community participation and support increasing for Alzheimer’s ACT and the work we do.
Alzheimer’s ACT always holds a Month with an exhibition of work by Insurance Scheme. Holding range of activities during Dementia the Alzheimer’s ACT Art Group at The events at Carers ACT enables us to Awareness Month to reach as wide Hellenic Club from 1 - 5 September. accommodate a larger audience than an audience as possible. (More on page 2). is possible at our Kaleen premises.
During September Alzheimer’s ACT An education session for the general Also at Carers ACT was a brain had information stands maintained by public on What is dementia? was health information day on 19 volunteers and staff at both Canberra held at Kaleen on 9 September and September which included a Your Hospital and Calvary Hospital. an information session was held at Brain Matters™ (YBM) presentation Carers ACT on 16 September with and demonstration on healthy We opened Dementia Awareness Ken Baker on the National Disability cooking by Nutrition Australia and an Story continued next page
Photos Above, Left to Right: Les Makai and his artwork at the Hellenic Club exhibition, YBM presenter Charise Buckley, Memory Walk&Jog, Member of the Alakara Group enjoying a Questacon demonstration.
Page DEMENTIA AWARENESS MONTH ACTIVITIES 2 - 4 NEWS 5 - 7 STAFF NEWS 8 AN EVENING WITH ITA 9 PHOTO ALBUM 10
NEWS
DEMENTIA AWARENESS MONTH ACTIVITIES (CONTINUED FROM PAGE 1) exercise session by Judy Croston. Ainslie Football Club by Steve Milton To finish off Dementia Awareness from the UK. The subject of the Month Alzheimer’s ACT held a Sunday 21 September was the date special Dementia Awareness Month multi-cultural information and open for our Memory Walk&Jog which talk was Dementia Friendly Concepts day at Villaggio Sant’ Antonio on 23 was a huge success with over 450 and Communities. The afternoon September. registrations. Thankfully Canberra also included a presentation by Ted turned on a sunny day for us to and Colleen Duff who are building celebrate World Alzheimer’s Day a dementia-friendly home as well 2014. (For more see page 3). as a short talk by Kate Swaffer from South Australia and Breda Jones, Guests were treated to a wonderful a member of Alzheimer’s ACT. (For presentation on 22 September at the more see page 4)
ACT ART GROUP EXHIBITION HELLENIC CLUB 1 - 5 SEPTEMBER 2014
Photos Below Left to Right: Warren Cameron, Jane Allen thanking Jim Power for his work in framing the paintings, Klaus Van Kampen and Lorraine Wadley.
Disclaimer About Us Board Directors
Articles in this publication provide a Alzheimer’s Australia ACT provides Greg Fraser - President general summary only of the subject information, advice, support, advocacy Gayle Sweeney - Vice President matter covered. Any person with and education for the thousands of dementia should seek professional Canberrans, their families and carers Trevor Wheeler - Treasurer advice about their specific case. living with dementia. John Fely - Director Alzheimer’s Australia ACT is not Michael Pedler - Director liable for any error or omission in Our vision is for a society committed this publication. Permission should to the prevention of dementia, while Geoff Hine - Director be sought from the Editor before valuing and supporting people living Camilla Rowland - Director reproducing articles. Once permission is with dementia. Sharon Winks - Director given the source must be acknowledged. Jane Allen - CEO Alzheimer’s Australia ACT does not To find out more about us and endorse any products, opinions or the services we provide, visit services of any description. www.fightdementia.org.au or call the National Dementia Helpline on 1800 100 500.
2 2 DECEMBER 2014 LIVING WITH DEMENTIA 3
NEWS
WHAT A WALK!
World Alzheimer’s Day 2014 was again the date for Alzheimer’s ACT’s Memory Walk&Jog and this year our route took us from Lennox Gardens, Lake Burley Griffin, under the two bridges to Bowen Park and return. Registrations for the walk were nearly of his grandmother, Reba. Nicole double that of our first walk in 2013. Riding, the first placed female runner This year we were amazed at the was also running in memory of her fundraising efforts of our participants Nan, 2nd place female was Melanie which were triple that of the previous Callaghan from Team Bobby’s Girls year. Alzheimer’s ACT raised $20,000 and 3rd was Carolyn Barker running in from the event through individual memory of her Ama. Second placed registrations and fundraising on the male runner was Lachlan Hogg, Everyday Hero website. closely followed by David Clarke; both good friends of Alzheimer’s ACT. The lead-up to the event was a busy time with staff hard at work publicising This year there were quite a few and preparing for the day. Al the teams registered for the Walk&Jog Elephant worked tirelessly promoting and it was great to see the teams from the event and on the big day Al had RACFs which included teams from a wonderful morning greeting people Kankinya, Goodwin, Adria Village and and having photos taken. Villaggio Sant’ Antonio.
Gai Brodtmann, Federal MP started Alzheimer’s ACT would like to thank both the Run and Walk, commenting Goodwin Aged Care Services for their that it was the first time she had ever sponsorship, The Tradies Community used a starting horn. Crew for their valuable assistance as Top: Warm up with the Southern Cross marshalls on the day, Wiffens for the Health Club; Gai Brodtmann starts off Board Directors The competitive group of runners delicious fruit and the Southern Cross the walkers; participants coming over the were led to the finish line by Peter Health Club for their sponsorship and finish line. Hosking who finished the 6km course warming up participants before the Below Left: Al with Zanda, Al and friend; Greg Fraser - President in just over 19min 30sec - a fantastic event. Team Kankinya; 1st ladies runner, Nicole Gayle Sweeney - Vice President time. Peter was running in memory Riding; 1st Male runner, Peter Hosking Trevor Wheeler - Treasurer John Fely - Director Michael Pedler - Director Geoff Hine - Director Camilla Rowland - Director Sharon Winks - Director Jane Allen - CEO
2 2 DECEMBER 2014 LIVING WITH DEMENTIA 3
NEWS
DEMENTIA FRIENDLY CONCEPTS AND COMMUNITIES STEVE MILTON PRESENTATION
On Tuesday 23 September 2014 Alzheimer’s ACT hosted a presentation by Steve Milton from the UK. Steve was the guest speaker touring Australia for Alzheimer’s Australia during Dementia Awareness Month 2014.
Steve also spoke on the same day at the Parliamentary Friends of Dementia at Parliament House and we were fortunate that his engaging personality convinced two extra speakers to come back to the Ainslie Football Club and speak to our audience. Our extra speakers were Breda Jones, a person living with dementia and member of Alzheimer’s ACT and Kate Swaffer from South Australia, newly employed spokesperson of Alzheimer’s Australia and person living with Younger Onset Dementia.
Steve Milton’s presentation spoke of his work with Innovations in Dementia, a non-for-profit community interest company in the UK that works with people with dementia, partner organisations and professionals to develop and test projects that enhance the lives of people with dementia. The entertaining and inspirational talk discussed how social action could be a way to reduce stigma and change community attitudes about dementia. He also described some case studies from the UK highlighting ways in which a dementia-friendly community can be achieved.
Kate Swaffer talked about her new role as Top Left: Steve Milton Right: Breda Jones and Steve Milton spokesperson for Alzheimer’s Australia and how her Below Left: Kate Swaffer Right: Ted and Colleen Duff life has changed since her diagnosis. Breda Jones spoke of her diagnosis experience which included losing her employment and later joining Alzheimer’s The afternoon was made even more valuable to those who ACT. attended by the willingness of the speakers to take questions from the audience. The feedback received paid testament to Colleen and her husband Ted gave a wonderful the success of the event and Steve Milton commented that presentation of their plans to build a dementia- it was the best event he had attended so far in Australia with friendly house in Googong. Since Ted’s diagnosis the warmth and engagement of the audience and the way in they have sold their property outside Canberra which people living with dementia and their carers were given and with determination and resourcefulness have a voice. created plans for a house which will enable them to live as comfortably and easily as possible while A big thank you to Kate, Breda, Colleen and Ted for their managing the challenges of the future. Also high on valuable contributions to Alzheimer’s Australia ACT and the priority for their plan is to create a house which helping create a dementia-friendly community. is environmentally sustainable and a home that is dementia friendly.
2 4 DECEMBER 2014 LIVING WITH DEMENTIA 5 NEWS
A new resource has been developed by the Alzheimer’s Australia Dementia Advisory Committee which contains principles of communication that people living with dementia have said would make a difference to their lives.
The Dementia Advisory Committee PLEASE SPEAK CLEARLY TO DON’T QUESTION MY is made up entirely of people living ME DIAGNOSIS with dementia. The Committee’s Make eye contact and speak clearly. The symptoms of dementia are not role is to advise and determine the Use short sentences, with one idea always obvious. Listen to me and priorities of people with dementia in at a time. Avoid jargon, as I might don’t minimise my feelings. regard to consumer advocacy, new misunderstand. policy, service delivery and program DISTRACTIONS CAUSE development. The Committee is PLEASE KEEP QUESTIONS DISRUPTIONS supported by Alzheimer’s Australia. SIMPLE Less noise and fewer distractions, Make sure I am listening and use such as bright lights, will help me to The Committee hopes the brochure simple questions and/or repetition, focus. will be used to help family, friends, offered with sensitivity. It’s easier for carers, service providers, health me to answer direct questions, rather BREAK IT DOWN professionals and the general than open-ended questions, such as Providing information in smaller community alike. saying ‘Wasn’t it lovely when we went chunks will really help me. out to the park yesterday?’ not just You can view the brochure at https:// ‘Wasn’t it lovely yesterday’. SIGNAGE fightdementia.org.au/sites/default/ Please use clear and simple signage. files/TalkToMe Order copies of TREAT ME WITH DIGNITY AND TalkToMe by emailing Nat.Admin@ RESPECT alzheimers.org.au I am still a person, so don’t patronise me. Respect and empathy are The main points in the brochure are: important to everyone. If I act differently it may be because I am TALK TO ME having difficulty communicating or Please talk to me, not my carer, because of my disease. family member or friend. Don’t prejudge my level of understanding.
2 4 DECEMBER 2014 LIVING WITH DEMENTIA 5 NEWS
TURMERIC’S ROLE IN BRAIN CELL REGENERATION
New research suggests that aromatic-turmerone (a So while the study has achieved interesting results, compound found in the turmeric plant) can induce and further studies are required to understand the molecular promote regeneration of brain cells in rats. processes behind how this compound might enhance cell production. The researchers would also need to explore The study was published in the journal Stem Cell alternative methods of drug administration which could be Research and Therapy by researchers at the Institute of more appropriate for human clinical trials. Neuroscience and Medicine in Germany. The study had two phases, in vitro (assessing the effects on rats’ brain So, while it might be tempting to overload on curry, or cells in tests tubes) and in vivo (assessing effects on live add a bit of extra turmeric spice into your meals each rats). night, this study not does not currently suggest that regular consumption of turmeric would be beneficial for In phase one of the trial, the researchers found that when brain health. However, it does add to a growing body the turmeric compound was added directly to rat brain of literature which suggests that curcumin, another stem cell cultures in test tubes, the numbers of brain compound found in the turmeric plant, may play a role cells nearly doubled compared to cultures of brain stems in reducing the risk of Alzheimer’s disease through cells that didn’t have any turmeric compound added. its antioxidant, anti-inflammatory and anti-amyloid Just as importantly, the trial established that the turmeric properties. compound didn’t cause cell death.
The next phase of the trial was to assess the effects of the turmeric compound on the rat brain itself. In this phase, the researchers found that the subventricular zone (a part of the brain where cell production is prominent) was wider, and the hippocampus (the brain’s memory centre) was expanded in the brains of rats injected with the compound compared to control rats that underwent the same surgical procedure but without the injection of aromatic-turmerone.
This article is taken from an article by Ian McDonald, Dementia News#20, October 2014
GET IN FOR A BURGER IN NOVEMBER
Alzheimer’s ACT has again been accepted into the Local Matters program at Grill’d Belconnen for the month of November.
Grill’d has created Local Matters with the aim of supporting unsung heroes in the community rather than the big groups who always get the limelight.
Every month $500 will be split amongst 3 local groups. When you buy a burger at Grill’d you will be given a token to vote for your favourite community group.
We hope as many people as possible get down to Grill’d Belconnen to support Alzheimer’s Australia ACT.
2 6 DECEMBER 2014 LIVING WITH DEMENTIA 7 NEWS
COPING WITH THE HOT WEATHER
Summer 2014 is predicted to be a hot one. It is important People living for carers and those with dementia to be aware of heat with dementia stress and plan ahead. Here are a few tips to help with are susceptable to the warm weather: dehydration so it is important to keep up Advice for Carers fluid intake. Avoid This advice is just as important if you care for an older alcoholic, hot or sugary family member, friend or neighbour. Remember that as a drinks (including tea and coffee) because they can make carer, if you don’t take care of yourself in hot weather you dehydration worse. Make ice cubes from water or cordial are putting your own health at risk as well as that of those and suck on them. you care for. Keep cool by using your air conditioner or put a bowl of Plan Ahead ice cubes in front of a fan to create a cool breeze. Put Ask a friend or family member to check on you twice a your feet in a bowl of cool water. day if possible during hot weather, especially if you live alone. It is better for your friend or family member to Keep food safe when handling and storing to avoid the come and see you as this will help them check for any risk of food poisoning. Defrost food in the fridge rather changes to your physical condition. Make sure you have than on the kitchen bench. a phone that will work if there is a power failure. If you have a safety alarm pendant, make sure this will also Eat smaller meals more often. Cold meals such as work if the power is off. Know who to call if you need salads and fruit, help keep your water levels up and as help. If you think your symptoms are serious call for an you are not using your stove or oven your home will be ambulance immediately on triple zero (000). cooler.
MAJOR RESEARCH STUDY ‘SOLANEZUMAB VERSUS PLACEBO’
St Vincent’s Hospital in Melbourne is acting as the central coordinating centre for the global study: ‘Effect of Passive Immunization on the Progression of Mild Alzheimer’s Disease: Solanezumab (LY2062430) versus Placebo’. This is a major research study that will investigate whether an investigational medication called Solanezumab is safe for long term use and if it will slow the progression of symptoms of Alzheimer’s Disease as compared to a placebo.
Solanezumab has been developed in a new class of St Vincent’s Hospital is currently looking for participants drugs which has shown in previous human trials that aged between 55 and 90 years who have been it can slow down progression in people with a mild diagnosed with Alzheimer’s disease and the study has form of Alzheimer’s. Principal investigator, Associate some strict criteria for participants and more can be found Professor Steven Collins, from St Vincent’s Centre for out by visiting their website https://alzheimerstrials. Clinical Neurosciences and Neurological Research, said svhm.org.au or by phoning their contact number (03) Solanezumab had the potential to be the first drug to alter 9231 2333. the course of the currently untreatable disease. The study is expected to take up to two years to enrol Associate Professor Collins said the drug worked by patients and several years to complete. Recruitment in attaching to the beta-amyloid plaques that accumulated Australia will end in December. in the brain and removed them from the body through normal clearing mechanisms, like it would do to clear bacteria or viruses.
2 6 DECEMBER 2014 LIVING WITH DEMENTIA 7 STAFF NEWS
MEET MICHEAL ALZHEIMER’S ACT NEW OFFICE MANAGER
Hello I am the new office manager. I am responsible for leading the adminstration team to ensure we provide quality services to all our consumers.
I am a new father with a six month old little girl called Charlotte who my life revolves around.
I came from Mercy Home and Community Care where I was the Team Leader for the office. We provided a wide range of care and nursing services to assist people to live a safe and independent life in their home and community.
I also currently work with the Australian Army Cadets as the Battalion Quartermaster. Before starting with Alzheimer’s Australia ACT I was away for 2 weeks with the Australian Army Cadets for a 2 week camp where I managed all of the logistical processes for one thousand teenagers.
I am really enjoying working with everyone and looking forward to many years of service with you all.
MOSES CREATING FRIENDSHIPS AT ALZHEIMER’S ACT
Hi I am Moses. Here at Alzheimer’s ACT I work in the Dementia Projects Area co- ordinating groups such as the Tuesday Men’s Social Support, Friday Alakara Group, Greening Australia and help out with other carer groups as needed.
I come from a background in community work in Africa where I worked specifically with clients with HIV. Before Alzheimer’s ACT I worked at Carers ACT where I was a Respite Links Co-ordinator.
I have been with Alzheimer’s ACT for 6 months now and have found the job extremely satisfying with each day being different. I have really enjoyed working with the team here with their professional and family-oriented approach of management.
In my spare time I play soccer and am still learning how to swim.
BUNNINGS BBQ
Our Fundraising Committee is holding a BBQ outside the Belconnen Bunnings store on Sunday, 14 December 2014. So come on down to pick up some plants or tools for all those jobs over Christmas and have a sausage sizzle.
2 8 DECEMBER 2014 FUNDRAISING
AN EVENING WITH ITA BUTTROSE
An Evening with Ita was held on Saturday, 18 October at The Ainslie Football Club. This was the first large fundraising event of this type held by Alzheimer’s ACT and what a successful and enjoyable evening it was.
The aim of the event was to raise vital funds for The guests enjoyed a delicious three course gourmet Alzheimer’s ACT to enable us to continue providing dinner and wine donated by Lambert Vineyards, a highly education and support for the growing number of recommended local label. Canberrans needing our assistance. The event was also an opportunity to spread awareness to people in Many people and organisations contributed to the the community, many of whom had not previously been success of the evening including: aware of the work of Alzheimer’s ACT. Ita Buttrose, guest speaker After months of preparation all the efforts of organisers Alex Sloan, interviewer resulted in a stunning evening which raised a record Sir David Smith, Alzheimer’s Australia ACT Patron $37,000 for Alzheimer’s ACT. The sold-out event was attended by an interested and enthusiastic audience. The Alzheimer’s ACT Organising Committee: Greg Fraser, Trevor Wheeler, Jane Allen, Eileen McEntee, The event organisers were very fortunate in getting Sing Judy Woolstencroft, Nikki Brown and Tegan McGrath Australia to perform at the beginning of the evening. It Corporate Tables: Canberra Southern Cross Club, CBRE, was also a nice opportunity for the choir to catch up with RSM Bird Cameron, Vincents Chartered Accountants, their Patron, Ita Buttrose. Mezzanine Financial, Griffin Legal ABC 666AM presenter, Alex Sloan conducted the Donors and Sponsors: Ainslie Football Club, B Natural interview with Ita which covered many aspects of Ita’s Productions, Lambert Vineyards, RMC Duntroon, life and career. Ita also spoke of her involvement with Gary Humphries, Australian War Memorial, Maria Alzheimer’s Australia through her term as National Selleck Properties, Jet Flight Simulator, Club Lime, President and now as National Ambassador, she ACT Brumbies, Independent Property Group, Charcoal continues to speak on issues around those living with Restaurant, National Museum of Australia, The dementia and their carers with great passion. Wallabies, Biztech, Helping Hand Group, Parlour Wine Room, Courgette, Wild Duck Restaurant, Koula Notaras, After the interview it was time to get down to the business Jeff & Meg Colwell, Allen Associates, Hang Ups Picture side of the evening with the live and silent auction of Framing, ESP Solutions Group, Amanda J Thoms- items which were donated to Alzheimer’s ACT and Westende. sourced by the Helping Hands Group. The bidding was hot especially during the 65inch curved screen TV donated by ESP Solutions Group.
Photos from Left to Right: Sing Australia Chor, Ita being interviewed by Alex Sloan, Auctioneer Peter Walker
2 8 DECEMBER 2014 LIVING WITH DEMENTIA 9 PHOTO ALBUM
An evening with Ita - Saturday, 18 October 2014 From Top left: Steve Doszpot, Jane and Jim Allen; Ita Buttrose and Alex Sloan; Greg Fraser Alzheimer's Australia ACT Board Vice President; Bottom left: Bev Porteous, Eileen McEntee and Ian Porteous; Guests enjoying the evening; Sir David Smith, Alzheimer's Australia ACT Patron and Jane Allen, Alzheimer’s Australia ACT CEO.
From Top left: Al the Elephant hard at work in Garema Place with Alastair Coe; Colleen Duff speaking at the Dementia Friendly Communities presentation; Nutrition Australia demonstrating healthy cooking during Dementia Awareness Month; Spanish dancers perform at a Culturally & Linguistically Diverse event during September; Canberra Chordsmen perform for the Alakara Group; Larry Brandy an Indigenous story teller demonstrating an emu hunt with the Alakara Group. 10 DECEMBER 2014 LIVING WITH DEMENTIA 11 NEWS
NEW BOOKS IN THE ALZHEIMER’S ACT LIBRARY
The Simplicity of Dementia - A guide for family and carers by Huub Buijssen The author provides a person-centred approach to discussing the experience of dementia and offers guidelines for family caregivers and professional carers. This jargon-free text includes the voices of relatives, people with dementia and nurses.
Dementia Beyond Drugs - Changing the Culture of Care by G. Allen Power, M.D. Shows why we must change the way care is provided to our elders and how it can be accomplished. Embracing humanistic, enlightened practices that address all the common challenges in dementia care, this book reveals what it takes to effect real culture change within residential care settings while reducing the administration of unnecessary psychotropic drugs.
Chicken Soup for the Soul – Living with Alzheimer’s & Other Dementias by Amy Newmark and Angela Timashenka Geige 101 stories of caregiving, coping and compassion Support, advice and comfort for caregivers and those living with Alzheimer’s. Chapters include ‘Accepting a New Reality’, What Does It feel Like?’, ‘Strategies and Tips for Coping’, ‘Next Steps and Tough Choices’.
Alzheimer’s disease – 300 tips for making life easier by Patricia R. Callone and others A guide filled with tips and techniques that will help families, friends, and caregivers assist individuals with Alzheimer’s disease. It also offers practical advice on how to cope with the personality and behavioural changes that occur throughout the disease’s progression.
ALZHEIMER’S ACT EDUCATION PROFESSIONAL EDUCATION, NOVEMBER 2014 RSVP ESSENTIAL FOR ALL SESSIONS - CALL 6255 0722 OR EMAIL [email protected]
Positive Dementia Care for Professional Dementia Enabling Environment Staff Workshop Information and tools to support and improve the A workshop to provide participants with information quality of life for the person living with dementia. and practical ideas and strategies on how to design Date: Thurs, 27 Nov and foster a dementia-friendly environment - no Cost: $50 matter what the design or structure of your building Time: 1.30pm - 4.30pm - old or new. Venue: 159 Maribyrnong Avenue, Kaleen Date: Tuesday, 25 November 2014 Cost: $60 Time: 9.30am - 12.30pm Venue: 159 Maribyrnong Avenue, Kaleen
10 DECEMBER 2014 LIVING WITH DEMENTIA 11 MERRY CHRISTMAS FROM ALZHEIMER’S ACT
MEMBERS’ AND CLIENTS’ CHRISTMAS PARTY
You are invited to join in the fun at Alzheimer’s Australia ACT 2014 Christmas Party.
There will be music, dancing, delicious lunch, fun and prizes and loads of holiday cheer. Be there for the drawing of our special Christmas Raffle.
DATE: Tuesday, 9 December 2014 WHERE: Ainslie Football Club, Wakefield Avenue, Ainslie TIME: 11.00am - 1.30pm COST: $25 per person RSVP: by 2 December 2014 - please phone 6255 0722 (payment required on booking)
Transport not provided. Please let us know any special dietary requirements.
HO, HO, HO, CHRISTMAS BON BON JOKES
Q. Why is Santa a good race car driver? A. Because he is always in pole position. Q. What do you get when Santa goes down the chimney when the fire is lit? A. Crisp Cringle. Q. What do Elfs learn at school? Knock, Knock A. The Elf- abet. Who’s There? Hannah Q. What type of pizza does Good King Wenscales order? Hannah Who A. Deep pan, crisp and even. Hanna Partridge in a Pear Tree!
Never a Christmas morning, never an old year ends, but someone thinks of someone; old days, old times old friends.
Author: unknown
The office of Alzheimer’s Australia ACT will be closed from Thursday, 25 December 2014 and reopens 9.00am Monday, 5 January 2015
NATIONAL DEMENTIA HELPLINE 1800 100 500 2 12 DECEMBER 2014