in toucH - Dementia

In touch SUMMER 2014 1+ ServiceS • education • fundraiSing • newS

in toucH the quarterly newsletter of alzheImer’s australIa nsw summer 2014. Issue 91

dementiaawareneSS

montHevent HigHligHtS aS

we focuS on creating a dementia-friendly nation

reducing tHe preScription of antipSycHoticS

free reSource releaSed

In touch SUMMER 2014 3

as we wind down to the end of the year, we have a chance to reflect on past achievements and to look to some of the new opportunities that lie ahead.

Dementia Awareness Month was one such achievement. Held throughout September, a number of activities

occurred across NSW. This year’s theme, Creating a Dementia-Friendly Nation, highlighted steps we can all take to ensure our communities are dementia-aware, safe, tolerant and inclusive places for people with dementia to live.

It is also important to include the wishes and feedback from members of the community who are living with dementia in their dementia-friendly initiatives. The Guide to Becoming a Dementia-Friendly Community, launched during Dementia Awareness Month, and developed by AlzNSW with the help of the Port Macquarie community, is a good example of how collaboration between community leaders and groups and people living with dementia can achieve meaningful change. AlzNSW is fortunate to have the support of Member for Port Macquarie Leslie Williams MP on this project. Read more about this on page 10.

Thousands took part in the four Memory Walk & Jog events held in NSW this year. Each of these events was a colourful display as people bonded through shared experiences and walked in memory and support of loved ones. Our Memory Walk & Jog events raised more than $300,000 this year, which will be a real boost to AlzNSW and will be used to fund many services across the state.

It is exciting to be able to welcome His Excellency General The Honourable David Hurley AC DSC (Ret’d), Governor of New South Wales, to the role of AlzNSW Patron. His Excellency has accepted the role following the retirement of Professor Marie Bashir AC, CVO from office in October.

A most distinguished Patron, Professor Bashir supported AlzNSW for a number of years attending several key AlzNSW events including the opening of the Hunter Dementia and Memory Resource Centre in 2008 and the 30th anniversary celebrations at Government House in 2012. AlzNSW would like to thank Professor Bashir and welcomes His Excellency to the role of AlzNSW Patron.

And finally, congratulations to Merv Gillies, one of our members from the Mid-North Coast, who was the recipient of a Highly Commended Award in the 2014 NSW Carers Awards. Merv contributes much to our organisation in a variety of ways and we think this is well-deserved recognition.

From everyone at AlzNSW we hope you have an enjoyable holiday period, and we will bring you more news and exciting developments in upcoming editions of In Touch.

the hon. John watkins, ceo, alznsw

Dementia is one of the most challenging conditions that the medical profession and the aged care community face. Many people living with dementia will experience behavioural and psychological symptoms during the course of their illness and may even develop behaviours that place themselves and others at risk.

This can be a challenging situation for both people living with dementia and carers. As a result, antipsychotic medications are frequently used to reduce the impact of such symptoms.

However, there is growing concern from healthcare professionals and the broader community that antipsychotics are being overprescribed.

The challenge for healthcare professionals is to identify situations where antipsychotics can be reduced or deprescribed, and to look for alternative solutions for managing symptoms.

Families and care staff face a myriad of challenges in dealing with daily care and safety issues. Managing antipsychotic medication for people with behavioural and psychological symptoms of dementia is a collaborative effort. Successful deprescription requires close consultation between the patient’s doctor, pharmacist, aged care staff as well as the patient and their family, and can play a vital role in improving the lives of those living with dementia.

In response to this issue, Alzheimer’s Australia NSW (AlzNSW), in conjunction with Southern Cross Care NSW/ACT, the Dementia Collaborative Research Centre and AMA (NSW), has developed a training video. Its purpose is to support GPs, nurse practitioners and other healthcare professionals identify people living with dementia, either in the community or in a care home, for whom an antipsychotic is no longer an appropriate prescription.

On 8 October, AlzNSW launched a new video resource, Antipsychotics & Dementia – Managing Medications for Behavioural and Psychological Symptoms of Dementia, at Parliament House in NSW.

Alzheimer’s Australia has been vocal for some time about the issue of the overuse of antipsychotic medications. We stand for the rights of people living with dementia and their carers. It is our duty to speak up for those living with dementia.

We believe this new video resource helps to advise and educate, to raise awareness in a positive, productive way and to use the latest evidence to inform best practice.

The video has now been added to our Dementia Daily website and Alzheimer’s Australia’s YouTube Channel – we invite you to watch it. Copies of the DVD are also available from AlzNSW. Please contact AlzNSW reception on (02) 9805 0100.

Jerry ellis ao, chair alznsw

raiSing awareneSS

ceo’S meSSage

cHair’S meSSage

facing cHallengeS

3 cHair’S and ceo’S meSSageS

4 newS• Key worKer’S winning poSter• nSw carerS weeK• 21 day your brain matterS cHallenge • Spreading cHriStmaS cHeer • reducing tHe uSe of antipSycHotic

medicationS in people witH dementia• dementia and our mob

8 cover Story• dementia awareneSS montH wrap-up• Steve milton Seminar• courageouS converSationS launcH• memory van• memory walK & Jog

14 feature driving and dementia

16 reSearcH • the role of turmeric in brain cell regeneration • new diagnostic test for alzheimer’s • the impact of fasting on dementia risk

17 ServiceS• 10 wayS alznSw can Help• Q&a: doeS becoming forgetful mean it’S

dementia? travelling witH dementia

18 fundraiSing zumbathon fundraiser

19 in memoriam

20 reSourceS in tHe library

contentSin toucHThe quarterly newsletter for members of Alzheimer’s Australia NSW

ceo The Hon. John Watkins

General manager services Robyn Faine

General manager Policy, research and Information Brendan Moore

General manager human resources and Volunteering Anneliese Coghlan

General manager marketing and communications Andrew Mills

General manager media Sarah Price

General manager fundraising Simon Crowson

General manager corporate services Chris Champ

honorary medical advisors Professor Henry Brodaty AOCo-Director, Centre for Healthy Brain Ageing, UNSWDirector, Dementia Collaborative Research Centre

Dr Helen CreaseySenior Staff Specialist, Geriatric Medicine, Deputy Director of CERA

Assoc Prof Michael ValenzuelaGroup Leader Brain & Mind Institute University of Sydney

Dr Bryce Vissel Senior Research Fellow, Group Leader, Neurodegenerative Disorders Garvan Institute of Medical Research

editors Andrew Mills and Sarah Pricet: (02) 9805 0100e: [email protected] [email protected]

alzheimer’s australia nsw PO Box 6042 North Ryde NSW 2113 Australiat: (02) 9805 0100f: (02) 9805 1665e: [email protected]: www.fightdementia.org.au

Registered as a Print Post Publication Number PP: 100008217 ISSN: 1038-7854

Articles in this publication provide a general summary only of the subject matter covered. Any person with dementia or a carer for a person with dementia should seek professional advice about their specific case. AlzNSW is not liable for any error or omission in this publication. Permission should be sought from the editor before reproducing articles. Once permission is given the source must be acknowledged. Products and services contained in paid advertisements or otherwise featured in this publication are not necessarily endorsed by AlzNSW. AlzNSW does not endorse any products or services of any description.

The views expressed by contributors to this newsletter are not necessarily shared by AlzNSW.

Published on behalf of Alzheimer’s Australia NSW by Mahlab Media www.mahlabmedia.com.au

witH tHanKSA big thank you to everyone who filled in and sent back our Reader Survey. We had a lot of responses and received some great feedback. We’ll give you a bit of a wrap-up of the findings in the next edition, but wanted to let you know that we have already started to make some changes to the magazine based on your suggestions. Thanks once again.

4 In touch SUMMER 2014 In touch SUMMER 2014 5

newS newS

Spreading cHriStmaS cHeerMembers of the Toronto Cafe Connect group have been busy packing gift boxes that will be sent to children in need to spread Christmas cheer over the upcoming festive season.

Over the past six months, members have been collecting small articles of clothing, stationery, toys and personal hygiene gifts to fill shoe boxes, which will be sent to children in more than 100 different countries.

The project – Operation Christmas Child – is run by Samaritan’s Purse and was facilitated by AlzNSW volunteer Di Imison.

It was a great morning for all involved, with 41 boxes packed in total.

Key worKer’S winning poSterAlzNSW Younger Onset Dementia Key Worker Program (YODKWP) worker Mary Clifton took out the prize for ‘best poster’ at the Dementia Collaborative Research Centre’s Forum. The forum ran during Dementia Awareness Month and the key topic was ‘Working together – knowledge translation matters’.

Mary’s poster took out top honours out of 41 others at the forum. In addition to bagging the top prize, Mary was one of only a dozen entrants chosen to speak to the forum about her poster. It was a great achievement. Congratulations Mary!

The YODKWP provides individualised information and support to improve the quality of life for people with younger onset dementia.

council leaderS up for a cHallenge Three members of the Great Lakes Council’s leadership team recently completed the ‘21 Day Your Brain Matters’ challenge to raise awareness for dementia and, at the same time, have taken steps to improve their own brain health.

There are approximately 1000 people living with dementia in the Great Lakes local government area. This is expected to increase to about 2000 people by the year 2050.

Councillor Leigh Vaughan, General Manager Glenn Handford and Director of Corporate and Community Services Steve Embry responded to these statistics by taking up the 21 day challenge, which involved doing something to challenge their brain every day for 21 days.

Alzheimer’s Australia’s ‘21 Day Your Brain Matters’ challenge recommends five simple steps to maximise your brain health:•Look after your heart•Do some kind of physical activity•Mentally challenge your brain•Follow a healthy diet•Enjoy social activityLeigh has had close friends and a family member diagnosed with dementia. She said her personal experience of the debilitating disease made her aware of its terrible consequences.

“Alzheimer’s Australia recently came to talk to us and the statistics are frightening. I’m doing this to raise awareness of the prevalence of the disease, but I’m also helping myself by keeping my brain healthy. I hope not to become another statistic,” Leigh said.

Leigh chose to learn new fingering patterns on her cello as her challenge.

“My ultimate aim was to increase my technical ability and level of skill which will set the path for the next few years, and take me out of my comfort zone,” she said.

General Manager Glenn Handford is a keen chess player. His challenge was to study the openings from the grand masters. Steve Embry, a passionate guitar player, also chose improving his skills with his musical instrument as his challenge.

If you would like to try the ‘21 Day Brain Matters’ challenge or would like information on how you can improve your own brain health visit: www.yourbrainmatters.org.au

carerS weeK celebrationSAlzNSW and Carers NSW held a high tea at Lake Macquarie during Carers Week to celebrate Australia’s 2.7 million unpaid carers, more than 300,000 of whom are aged under 24. Guest speakers discussed techniques to relieve stress and shared practical tips to help carers maintain their joy while caring for people with dementia.

nSw carerS award preSented at parliament HouSe

Hearty congratulations go out to one of our most hard-working consumers, Merv Gillies, for the NSW Carers Award, which was presented to him at Parliament House on 13 October.

Merv has been a long-time supporter of AlzNSW while caring for both his parents with dementia and has continued his support since they have passed away.

He is an active member of the Port Macquarie Consumer Advisory Group,

the National Consumer Advisory Committee and sits on the steering committee for the dementia-friendly communities project in Port Macquarie.

“Merv has used his caring experience to raise awareness about dementia and has been a great advocate for all those living with dementia,” Gary Thomas, Regional Manager North Coast said.

“The consumer voice is integral to the work we do at AlzNSW and Merv is an important part of that work.”

merv Gillies with John watkins and his 2014 nsw carers week award.

left to right: ann Jones, shelagh Johnson, christine Jones, Dr lee-fay low, ruth and Don Burgess ann and ray heggs

leigh Vaughan Glenn handford

steve embry

left to right: Justine sneddon, robyn faine, Dr lee-fay low and sally o’loughlin.

tHanK you alznSw patron marie baSHir

nSw’S Second-longeSt Serving governor and alznSw patron profeSSor marie baSHir ac, cvo retired from office in october.

As NSW Governor and AlzNSW Patron, Professor Bashir generously supported the organisation for several years. She also attended the 30th anniversary celebrations of AlzNSW at Government House in November 2012, meeting with many carers, supporters and volunteers.

AlzNSW wishes to thank Professor Bashir, offer best wishes for her future endeavors and is pleased to announce that His Excellency General The Honourable David Hurley AC DSC (Ret’d), Governor of NSW, has agreed to step into the role of Patron.

We welcome His Excellency and thank him for his support.


medication demonstrated any clinical benefits from taking it.

The report also found that these medications can have a range of serious side effects, including increased risk of stroke, increased risk of mortality, a greater chance of falls, and increased confusion.

Southern Cross Care (NSW & ACT) Chief Executive Paul McMahon said the organisation had identified the need for better management of behaviours of people with dementia without the reliance on antipsychotic medication.

“We also realised the need to educate our staff and health professionals, such as GPs, on eliminating high dependency on medication and improving outcomes for our residents with dementia,” Paul said.

Alzheimer’s Australia NSW CEO The Hon. John Watkins said the short film was a positive step towards supporting GPs, pharmacists and other healthcare professionals working with people with dementia, both in care homes and in the community, with how best to deal with the behavioural and psychological symptoms of dementia.

“This really emphasises the importance of a partnership between the family of the person living with dementia,

their treating doctor, their pharmacist and their care staff,” John said.

“It provides the evidence-base for the review and deprescribing of antipsychotic medications. The first line approach should always be to look and see if there are non-pharmacological approaches that may work better.”

Margaret Wood, daughter of a resident at Southern Cross Care (NSW & ACT), spoke of her experience visiting her mother who has dementia.

“Mum was put on a drug which made her very sleepy and her speech garbled,” Margaret said.

“She was also depressed and talked about wanting to die. When mum was taken off the medication she started to improve. Her speech got better, and she was eating more. She recognises us most of the time and she is bright and cheerful. It is so nice to visit her now.”

A new, free resource has been released to help doctors decrease the over-prescription of antipsychotic medication in people with behavioural and psychological symptoms of dementia.

The short film, Antipsychotics & Dementia: Managing Medications, was developed in response to recent research which found that antipsychotic medication, which can have serious side-effects, is used too frequently to manage behavioural and psychological symptoms of dementia.

Available on Alzheimer’s Australia’s Detect Early website, the resource has been developed by AlzNSW, in conjunction with Southern Cross Care (NSW & ACT) and the Dementia Collaborative Research Centre. It has also been supported by the Australian Medical Association (NSW).

AlzNSW Honorary Medical Advisor and the Director of the Dementia Collaborative Research Centre Professor Henry Brodaty, who appears in the short film, said that there are often a range of

non-pharmacological interventions that can and should be considered when managing behavioural and psychological symptoms of dementia, such as pain therapy and person-centered activity, before prescribing patients with antipsychotic medication.

“In some cases, the use of antipsychotic medication is appropriate,” Professor Brodaty said. “However, we know that in many cases, there are other, much more appropriate treatments that should be looked at first.

“For example, providing pain relief, tailoring personal care practices to the individual’s preferences or working with the family to engage the person in more meaningful and stimulating activities [are alternatives to be considered],” he explained.

Alzheimer’s Australia’s report, The Use of Restraints and Psychotropic Medications in People with Dementia, found that about half of people in aged care facilities are receiving psychotropic medications, with 80 per cent of those with dementia also medicated. It also found that international data suggests that only 20 per cent of people with dementia who are receiving antipsychotic

reducing tHe uSe of antipSycHotic medicationS in people witH dementia: a new approacH

newS newS

dementia and our mobDementia and Our Mob is just one of AlzNSW’s community dementia awareness projects. AlzNSW had the privilege of successfully piloting the program with 35 Indigenous people from the Gloucester and Armidale regions.

This program contains culturally appropriate and concise ‘what you need to know’ information about dementia, providing a short 45-minute interactive starting point for communities.

This program has been developed through extensive consultation with both regional and urban Indigenous communities in NSW to identify information gaps and learning needs.

Key findings show that while Indigenous communities are aware that dementia exists, they don’t understand what it is. Many people are not aware of their local dementia referral and support pathways, and are not engaging with service providers due to a combination of factors, including a fear of being removed from their homes and lacking support service knowledge.

we Know tHat in many caSeS, tHere are otHer, mucH more appropriate treatmentS tHat SHould be conSidered.

SYNOPSIS: Recent research has identified that antipsychotic medication is used too frequently, and for extensive periods of time, to manage behavioural and psychological symptoms of dementia (BPSD). Dr Henry Brodaty, Director of the Dementia Collaborative Research Centre, presents the evidence base to support the use of non-pharmacological interventions, person-centred activity and pain therapy as a first line approach in BPSD management. Dr Brodaty identifies situations when antipsychotic medications are appropriate, and a number of behaviours where antipsychotics would have no effect. The numerous short-term and long-term side effects, assessment and conditions to monitor for in the patient are clearly explained, including appropriate review and deprescribing guidelines. Dr Julian Pierre, a GP who visits a number of aged care homes, discusses the effect antipsychotic medication has on his patients, with a 12-week review, and a plan to deprescribe the medication when the BPSD is managed. Tim Perry, a consultant pharmacist, discusses how a revised medication management review (RMMRs), for people that reside in care homes, can be used to support a deprescribing plan. Tim also explains the benefits of Home Medicine Reviews (HMRs) for people who live at home. The video highlights the benefits of a collaborative approach towards the deprescribing of antipsychotics that involves the patient, family, care staff, doctor and pharmacist.

Acknowledgements: Alzheimer’s Australia NSW would like to thank everyone involved with the development of this film. This project was supported by financial assistance from Southern Cross Care NSW/ACT, Alzheimer’s Australia NSW and AMA NSW.

Alzheimer’s Australia NSW respectfully acknowledges the Traditional Owners of the land throughout Australia and their continuing connection to country. We pay respect to Elders both past and present and extend that respect to all Aboriginal and Torres Strait Islander people who have made a contribution to our organisation. The National Dementia Helpline T: 1800 100 500, is an Australian Government Initiative. © Copyright - Alzheimer’s Australia NSW 2014 www.detectearly.org.au Content may be copied in full with copyright, contact, creation and information intact, without specific permission, when used only for non-commercial or not-for-profit purposes. If any other use is desired, permission in writing from Alzheimer’s Australia NSW is required. Requests and inquiries concerning reproduction and rights should be addressed to Alzheimer’s Australia NSW, PO Box 6042, North Ryde, NSW 2113 or you can email us on: E: [email protected]

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ANTIPSYCHOTICS & DEMENTIA: MANAGING MEDICATIONS

A free resource for healthcare professionals working with people living with a diagnosis of dementia.

You can watch the video online: www.youtube.com/watch?v=lIIKe4nhXaq

watcH tHe video

the short film features Professor henry Brodaty (psychogeriatrician), Dr Julian Pierre (GP) and tim Perry (consultant pharmacist), who discuss the challenge of deprescribing antipsychotics for people with dementia and look at alternative solutions.

Participants of the Dementia and our mob pilot program found out essential information about alzheimer’s disease.


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dementia awareneSS montH wrap-uptHrougHout September, people all over nSw came togetHer during dementia awareneSS montH, embracing tHe tHeme ‘creating a dementia-friendly nation’ witH great entHuSiaSm.

Morning teas took place in Boorowa, Harden-Murrumburrah, Queanbeyan, Yass, Newcastle, Ballina, Walcha, Dubbo, Wauchope and Taree to name a few, where all things dementia were discussed.

Community Memory Walks were held in Dubbo, Lightning Ridge, Mudgee and Orange, which saw participants gather and march in support of those living with dementia, their carers, families and friends.

Information days and displays were held in Braidwood, Captains Flat,

Bungendore and Coffs Harbour. Open days gave people an opportunity to check out what was on offer and ask questions at the Percy Street Dementia and Memory Resource Centre in Hamilton.

Artistic endeavours were pursued with gallery visits, tours and programs in Sutherland and Tweed Heads.

Dementia Awareness Month is supported by financial assistance from the Australian and NSW governments.

This year, the Coffs Coast Dementia Action Group held a Dementia Information Day at Coffs Harbour City Square.

An estimated 1300 people live with dementia in the local region and the aim of the day was to raise awareness and highlight that dementia can happen to anyone.

Information about dementia, risk reduction and how the community can become more dementia-friendly was provided, along with musical entertainment and a Tai Chi demonstration. Fresh fruit was donated by local businesses and provided to members of the public to highlight the importance of healthy eating. The Coffs Harbour Health Campus and Mid North Coast Local Health District also provided people with free bottles of water.

The awareness displayed by the Coffs Harbour community was commendable, with strong support shown for the local people living with dementia.

leSlie williamS mp, member for port macQuarie

at tHe courageouS converSationS launcH

memory van,ligHtning ridge

memory walK, port macQuarie

courageouS converSationS launcH

information day, coffS Harbour

community memory walK, orange

community memory walK, mudgeee

memory van,ligHtning ridge

raiSing awareneSS,candelo marKetS

SuSan and david millar SpoKe at tHe Steve

milton Seminar


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knowledge and local people and, most importantly, it must involve local people living with dementia and their carers.”

Supporting the launch of the guide and in keeping with the Dementia Awareness Month theme Creating a Dementia-Friendly Nation, AlzNSW welcomed visiting UK dementia expert Steve Milton in September.

Steve, Director of Innovations in Dementia in the UK, started his national lecture tour in Sydney, speaking about the dementia-friendly work that has evolved in the UK and helped launch the guide during his visit to Port Macquarie.

Steve says that by creating dementia-friendly communities in Australia, it will help to reduce the social isolation that too often comes with a diagnosis of dementia.

“There are simple improvements that can be made in communities to make people with dementia feel more engaged in community life,” Steve said.

“For example, a dementia-friendly bank could have staff identified who have had dementia training and can provide better service to people with a cognitive impairment; a dementia-friendly retail store could examine their signage and layout to ensure it is meeting the needs of people with dementia; or a dementia-friendly community group could support a volunteer and employment program for people with dementia.”

Steve also spoke in Kiama, Melbourne, Hobart, Brisbane, Canberra, Adelaide and Perth during his visit, as part of a National tour for Dementia Awareness Month 2014.

courageouS converSationS film launcHalznSw HaS launcHed a new SerieS of SHort filmS, courageouS converSationS.

The films feature people living with dementia talking candidly about what people should know about the condition, along with the good and bad that comes with living with dementia.

Themes explored include the loneliness that comes as friends no longer visit due to the misconception that dementia is contagious and the effects of memory loss.

People with dementia talk about the unexpected positive things that have

happened following their diagnosis, including learning to appreciate their self-worth and the people who have come forward offering help.

There are three new short films that form part of the Courageous Conversations series and you can watch them here: http://www.dementiadaily.org.au/courageous-conversations-2/

AlzNSW would like to thank all those who generously participated.

The booklet, A Guide to Becoming a Dementia-Friendly Community, developed by AlzNSW, has already led to change in Port Macquarie, with the community coming together to make a number of small changes to improve the everyday lives of people living in the area with dementia.

The guide, based on an eight-step management model, outlines the practical changes, including dementia awareness information sessions for local council staff and the introduction of a dementia-friendly ‘men’s shed project’. The project has assisted the Port Macquarie community in its move towards becoming a dementia-friendly community for its residents.

Member for Port Macquarie Leslie Williams MP is the Chair of the Dementia-Friendly Community – Port Macquarie Steering Committee, which is where the Guide to Becoming a Dementia-Friendly Community was first developed.

“This has been such an exciting project to be a part of and it has already led to

permanent change in our community,” Leslie said.

“We’ve had great community leadership and a wide range of people working together on this project, including representatives from education, health, emergency services, Chamber of Commerce, registered clubs, Catholic Care of the Aged and more. Importantly, it has also included people with dementia and their carers.

“Changes have already been implemented, including increasing community awareness of

dementia in Port Macquarie, recommending improvements to the built environment including more shaded areas, wide and seamless footpaths, and colour contrast toilet doors in public areas through the development of the council’s Town Green and Town Square master plan.

“A local business is also working with us to help us become a pilot dementia-friendly business.

“The development of a dementia-friendly community has to be driven locally. It must be based on local

collaborating for a brigHt futurea new guide to Help communitieS become dementia-friendly waS launcHed in port macQuarie during dementia awareneSS montH.

a guide to Becoming a dementia-friendly communityrePort, SePtemBer 2014

Our family has been dealing with the challenges of dementia for almost 20 years as we’ve watched my wife Lyn – also known as mum or ‘mumma’ to our children and grandchildren – lose the capacity to perform in a number of significant areas. But these symptoms of her dementia certainly haven’t stopped her from continuing to engage in activities that she has always enjoyed.

Lyn has had a lifelong interest in art and music. Even though her ability to paint is decreasing, earlier on in her diagnosis she was able to attend art and music therapy at Alzheimer’s Australia, which she enjoyed greatly.

Through this time, we have been grateful for lots of love and support provided from a number of sources including, family, friends, neighbours, Alzheimer’s Australia, our church and Catholic Community Care. They have all supported us in a number of important ways.

Over the past 20 years supporting my wife through her dementia journey, there have been two important points that I have learnt. First of all, there is no cure for dementia. It has to be managed differently for each person. Secondly, don’t hesitate to ask for assistance. People are keen to help and have the freedom to say no if they can’t.

Caring for someone with dementia is not easy. There are new challenges each day. We try to work out her needs moment by moment and respond accordingly. We are learning to think outside the square and do things differently to ensure that life is kept at its best for Lyn.

Alan and Lyn are Dementia Advocates. They have shared their story as part of the 30 Stories 30 Days campaign during Dementia Awareness Month. To share your story or to get involved please contact Jo-Ann Brown. t: (02) 8875 4636 e: [email protected]

dementia advocateS programdementia advocate alan SHareS HiS experience.

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left to rigHt: leSlie williamS mp,Steve milton, Judy

bartHolomew, andrewmillS, brendan moore

and gary tHomaS

cHangeS Have already been implemented, including increaSing community awareneSS of dementia.steve milton

In touch SUMMER 2014 13

There were smiles for miles at all of the NSW Memory Walk & Jog events this year, with participant records soaring.

The events were a huge success in NSW, and in cities across Australia including Perth, Adelaide, Albany, Brisbane, Geelong, Canberra and Hobart.

AlzNSW would like to thank Bupa for another great year of partnership, and everyone who took part, fundraised and shared their stories to help us promote Memory Walk & Jog. We hope to see you all again next time.

Thousands of people showed their support throughout September. With their help, AlzNSW raised awareness and much-needed funds. left: AlzNSW Ambassador Ita Buttrose and acting AlzNSW CEO Chris Champ were presented with a generous cheque for $10,000 for AlzNSW by David Lane from Count Charitable Foundation.

5600 pair of

JoggerS

40,000Km covered

1600 bliSterS

22,600 memorieSSHared

$300,000+ raiSed

memory van memory walK & Jogmemory walK & Jog HaS wrapped up for 2014 in Spectacular Style, witH eventS in tHe Hunter, port macQuarie and Sydney regionS. tHe illawarra walK brougHt tHe circuit to a cloSe on 12 october.

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tHe memory van toured far and wide, witH culturally and linguiStically diverSe (cald) and aboriginal communitieS given acceSS to a HoSt of information via community gatHeringS Held acroSS nSw.

12 In touch SUMMER 2014

the van made a stop in Dubbo for the waratah Knockout event, bringing resources to the community.


feature

coping witH cHange: a guide to cHanging your driving HabitStwo new reSourceS Have been developed to Help Support people witH dementia tranSition from driver to non-driver.

Driving is something most people take for granted. It gives us freedom, flexibility and independence. While we will all need to step out from behind the wheel one day, conditions such as dementia can mean that the decision to stop driving needs to be planned for and made much earlier than expected.

Most older adults have driven safely and remained accident-free for many years. Unfortunately, dementia can silently disrupt driving skills. For many people with dementia, this can happen without them realising it. Over time, the risk of becoming lost or having a car accident rises significantly.

It is important to keep in mind that a diagnosis of dementia does not always mean that a person has to give up driving straight away. Because the condition involves a gradual decline in cognitive and physical ability, however, they will need to stop driving at some point. The experience of giving up driving can be very difficult for many

people, and the sense of grief and loss can be ongoing.

Making a decision about driving is tough. There are a number of options to consider. A decision needs to be made as to whether or not to continue driving with no change, stop driving now, drive less, or stop driving later.

The booklet, Dementia and Driving: A Decision Aid, produced by the University of Wollongong, is now available to assist people with dementia, and their families, to make the decision for themselves. It is hoped that early planning for retirement from driving will avoid the need to stop suddenly in the future, often at a point of crisis and when the decision is out of the person’s hands.

The booklet helps a person with a diagnosis of dementia and their family to consider:•Howdementiaaffectsdrivingskills•Youroptionsregardingdriving•Whatyouhavenoticedaboutyour own driving

•Whatsupportyouhave•Thereasonsforandagainstdriving•Wheretogoformoreinformation

or supportThe booklet aids decision-making and enables people with dementia to make good decisions about driving. It guides the person with dementia in a very practical way through four steps:steP 1 Clarify your decisionsteP 2 Determine what you need to

make your decisionsteP 3 Weigh up your optionssteP 4 Decide what happens next Local, national and international clinical and research experts, including staff from AlzNSW have reviewed the booklet. It has also been piloted by individuals living with dementia.

Download it at http://smah.uow.edu.au/nursing/adhere/drivingdementia/index.html. An interactive version is also available online, which can be completed to assist in making a decision.

aSSiSting witH one of tHe tougHeSt deciSionS: wHen iS tHe rigHt time to Stop driving after receiving a diagnoSiS of dementia?a new reSource booKlet, dementia and driving: a deciSion aid, HaS been publiSHed to aSSiSt people diagnoSed witH dementia in maKing tHe tougH deciSion about wHen to Stop driving.

AlzNSW and the NRMA have launched a guide, Staying on the Move with Dementia, to support people with dementia as their circumstances change when it comes to driving.

We know that giving up driving can be a difficult process for a person with dementia, their carers and the healthcare professionals who support them. It can be difficult to find information on the legal requirements, tips on how to have what can be difficult discussions, and access to alternative transport.

While some people with dementia can continue to drive safely for a period of time, at some stage all people with dementia must stop driving. All drivers with dementia are legally required to notify the Roads and Maritime Services (RMS) of their condition.

The guide looks at the key issues surrounding dementia and driving, and what mobility options are available for those who can no longer drive. It covers:•Howdementiaaffectsdrivingabilities•Thelegalrequirementsfordrivers

with dementia•Suggestionsonhowtohavehelpful

conversations about driving and dementia and driving cessation

•Theimpactofretiringfromdriving•AlternativestodrivingwithdementiaThe guide is packed with information, tips and resources that are useful for drivers with dementia, carers and healthcare professionals.

“Giving up their licence can be a very traumatic event for a person with dementia and for their carers. People need to know their legal obligations and, just as importantly, they need help in making the transition to being a non-driver,” said AlzNSW CEO The Hon. John Watkins.

“Staying on the Move with Dementia is a much-needed resource that will assist people to retire from driving and move to other forms of transport.”

NRMA President Kyle Loades said information was key to helping people with dementia and their carers tackle the challenges of driving and mobility.

“As our population ages and more Australians are diagnosed with dementia, it is absolutely critical we do everything we can to provide people with support around driving with dementia and the mobility options available once they can no longer drive,” Kyle said.

The guide provides a wealth of practical advice on how to prepare for the day when your loved one can no longer drive and what steps to take to make sure driving cessation has minimal impact on the quality of life for that person.

Staying on the Move with Dementia is available to download from the AlzNSW and NRMA websites: alznsw: http://goo.gl/6rwusw nrma: http://goo.gl/fvIhcc

For hard copies of Staying on the Move with Dementia visit an NRMA branch or phone the NRMA. t: 13 11 22

people need to Know tHeir legal obligationS. tHey need Help in maKing tHe tranSition to being a non-driver.

feature


turmeric’S role in brain cell regenerationNew research suggests that the aromatic-turmerone compound (found in the turmeric plant) can induce and promote regeneration of brain cells in rats.

The study had two phases, in vitro (assessing the effects on rats’ brain cells in tests tubes) and in vivo (assessing effects on live rats).

In phase one of the trial, the researchers found that when the turmeric compound was added directly to rat brain stem cell cultures in test tubes, the numbers of brain cells nearly doubled compared to cultures of brain stem cells that didn’t have any turmeric compound added. The trial also established that the turmeric compound didn’t cause cell death.

The next phase of the trial assessed the effects of the turmeric compound on the rat brain itself. In this phase, researchers injected the compound directly into a live rat’s brain. Examining the effects using PET brain imaging and a tracer to detect proliferating cells, 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) had expanded in the brains of rats injected with the compound, compared to control rats that underwent the same surgical procedure but without the injection.

reSearcH

lateSt StudieStHe role of turmeric in brain cell regeneration, new diagnostic test for alzheimer’s and research into if faSting decreaSeS tHe riSK of dementia.

While this is an interesting result, further studies are required to understand the molecular processes behind how the compound might enhance cell production, and to explore drug administration methods appropriate for human clinical trials.

diagnoStic eye teSt for alzheimer’s diseaseAustralian researcher Dr Shaun Frost and a team of researchers are developing eye-imaging technology that could diagnose Alzheimer’s disease and other forms of dementia up to 20 years before symptoms appear.

Their study included 40 participants with an average age of 73 years. Participants’ eyes were photographed twice with a high-resolution camera that identifies individual cells in the retina of the eye. The retina is the eye’s ‘sensor’, which sits at the back of the eyeball behind the pupil and the lens.

These photographs were then compared to an amyloid (a starch-like protein) PET scan of the participants’ brains. Amyloid PET scanning can definitively tell when Alzheimer’s disease does and does not exist in the brain, with or without symptoms.

The results showed that the eye scan test could differentiate between brains both with and without Alzheimer’s disease – all participants

with Alzheimer’s disease were correctly identified and four in five people without Alzheimer’s disease were cleared.

These findings are promising, with the eye test able to confirm everyone who had Alzheimer’s disease. However, they also suggest that some participants who were considered healthy controls (ie those with normal amyloid PET scans) displayed amyloid beta plaques in their retinal cells similar to that in those with Alzheimer’s disease. Further trials are required.

can regular faSting decreaSe your riSK of developing dementia?A recent news item claimed that regular fasting may be able to reduce your risk of dementia. The claim was based on people who were taking part in the 5:2 diet.

The 5:2 diet is a relatively simple formula where you eat ‘normally’ for five days out of the week and fast (consuming around 600 calories – the equivalent of some ham, eggs and toast) for the other two days.

Currently, the only scientific evidence evaluating the effects of fasting on brain health has been seen in mice. A 2007 study published in the journal, Neurobiology of Disease, found that mice with Alzheimer’s disease placed on either an intermittent fasting or a calorie-restricted diet were able to perform relatively better on a memory test, compared to mice with Alzheimer’s disease who were allowed to feed freely. Pathologically, they also found that the mice on the calorie-restricted diet (not the fasting diet) had less build-up on amyloid beta and Tau proteins (biomarkers of Alzheimer’s disease).

However, no published studies have evaluated whether the 5:2 diet (or fasting) reduce the risk of dementia in humans.

Q my wife HaS begun to SHow Some SignS of forgetfulneSS. we are botH getting older, doeS tHiS mean SHe could be getting dementia?

a Research shows that as we age, forgetfulness does happen. However, the loss of memory with dementia is different. It is persistent and progressive and is not a normal part of ageing. If you have any concerns at all we do recommend that you talk to your GP in the first instance.

Q my HuSband waS diagnoSed witH dementia Six montHS ago. we are conSidering going on a Holiday to england. iS tHere anytHing Specific i SHould be aware of?

a Many people have wonderful times travelling, but there are a few extra considerations when dementia is involved. A slower pace is recommended. For example, a stopover may be helpful. Alzheimer’s Australia’s Help Sheets have suggestions for different types of travel, tips for the families and friends of someone with dementia, and the warning signs that travelling is not recommended. To talk this through with one of our telephone counsellors, do not hesitate to contact us via the below channels.

Q&a

need anSwerS?t: 1800 100 500 e: [email protected] w: www.fightdementia.org.au

1 Support at time of diagnosis helps you and your family to make sense of the diagnosis and the next steps.

2 Practical advice helps you minimise the impact of dementia.

3Living with Memory Loss programs for people in early-stage dementia increase knowledge and confidence for managing memory loss.

4 Individual and family consultations help you plan for the future.

5 Education programs help you understand and live well with dementia.

6 Up-to-date information and resources about dementia and access to the members’ lending library keeps you and your family informed.

7 Connections with other people living with dementia enable you to share information and experiences.

8 Social and creative activities provide opportunities for meaningful participation.

9 Recommendations and advice about dementia support services in your area ensure suitable care.

10 Our provision of information to GPs and other healthcare providers helps them improve their care and support for you.

10 wayS alz nSw can HelpalznSw iS Here to Support people witH dementia, tHeir familieS and carerS. let uS count tHe wayS!

need anSwerS?Do you have a question for AlzNSW? Contact the National Dementia Helpline. t: 1800 100 500e: nsw.helpline@

alzheimers.org.au

alznsw campaigns rally the public and lobby the government to improve dementia funding and care.

courses and special events increase knowledge about dementia risk reduction and treatments.

ServiceS

more infoTo stay up-to-date with the latest dementia research, visit: dementiaresearchfoundation.org.au

DEMENTIA NEWSUNRAVEL THE SCIENCE BEHIND DEMENTIA RESEARCH

SUBSCRIBE TODAY VIA OUR WEBSITE TO RECIEVE THIS FREE E-RESOURCE DEMENTIARESEARCHFOUNDATION.ORG.AU UNDERSTAND.DISCUSS.PARTICIPATE.


in memoriam we offer our condolenceS to tHe familieS wHo Have loSt tHeir loved oneS. we alSo tHanK tHeir friendS and familieS wHo Have donated to alznSw.

Fred Adams

Margaret ‘Peggy’ Allen

Elaine Marie Anstee

Dora Archbold

Ada Arthur

Gladys Agnes Axford

Bonnie Elsie Baird

Hope Mechan Barnes

Claire Lavinia Batchelor (nee Kennedy)

Joan Matilda Beach (nee Moody)

Sam Begonya

Stanley Middleby Bennett

William ‘Bill’ Berry

Joyce Berwick

Narelle Boardman

Maria Elsa Bornow

Samuel Bow

Valerie Burghart

Warren William Butt

Carmen Cachia

Alice Margaret ‘Marg’ Cameron

Robert ‘Bobby’ Campbell

John Campbell

Patricia Carmody

Audrey Carter

Harold Carter

Nat Che

Joan Dorothy ‘Dotty’ Cherry

Keith Christie

Desolina Cipolla

Lawrence Cox

Allan John Cox

Douglas Crampton

Marie Jean Cudmore

Rosaria Dantoni

Paraskevi Dassaklis

Romeo Di Giulio

Margaret Daisy ‘Margot’ Dick

Jack Doolan

George Doumanis

Kath Downing

Tom Vincent Dowzer

Amelia Duggan

John Allenby ‘Allen’ Dunbar

Alma Ellen Dusting

Dorothy Rose Enright

Joycelyn Mary Evans (nee Steven)

Marion McLean Eyles

John Fairfax

Dorothy Esteele Fawkes

Cleve Dudley Fernance

Edmund Joseph Fitzgerald

Jennifer Ford

James Franks

Astrid Freedman

Concetta Gagliano

John James Gallagher

Lucia Gandin

Denzil Brian Rex Geach

David Michael Gibbs

Suzanne Mary Grice

Fay Noelene Hagan

Stephen Sheldon Hampton

Bridie Hardaker

Burnice Harvey

Ivy Henry

Rosemary Freda Hill (nee Norris)

Bruce Hodge

Maxine Honey

Antonio Iavarone

Keith James Irwin AOM

Joyce Shirley Jeffery

Maisie King

Peggy Kwan

Dorothy Lane

Patrick Thomas Lawlor

Phylis Lewin

Noel Long

Nigel Louez

Florence Lung

Richard Lydford

Joan Lynch

Iris Madden

Marjorie Marks

Pantaleone Martelli

Salvatore Mascera

Walter Bruce McGinnity

Ronald John McGrath

Kevin McMahon

Eleni Michaelopoulos

Jack Moreau

Ian Edmund Joseph Moutray

Caterina Angela Murace

Peter Edward Murphy

Waverley John Naseby

Carmelina Natoli

Maria Natoli

Patricia Therese Nolan

Robert William ‘Bob’ O’Brien

Raymond Colin Palmer

Caterina Palumbo

Nicki Pappas

Doris Jean Parton

Judith Anne Pike

Constance Alma Plaisted

Ian Oscar Plummer

Laurel Pocket

Phyl Podmore

Alan Gregory Poole

Jean Priest

Bill Puddy

Michele Raffaele

Joseph Ranaldo

Albert Reid

Brenda Richardson

Giorgio Romano

Warren Ross

Betty Elsie Rudd

Antonio Saba

Bruna Sain

Vincenzo Scarpinato

Rhonda Frances Scarvell

John Sexton

Pat Shedden

Shirley Edna Simpson

Marjorie Emmie ‘Marj’ Smith

Kathleen Spink

Zelmira Staron

Fred Steel

Sylvia Sutherland

Antonietta ‘Netta’ Tessier

Eric ‘Nooky’ Tindall

Joyce Mary Try

Geoff Turner

Egidio Mariano Vecchio

Ines Elena Ada Vergano

Mira Vicelich

Daisy Violet Walker

Alexander Watt

Edna ‘Nada’ Williams (nee Aldridge)

Norman Yates

Gino Zancanaro

Alzheimer’s Australia would like to acknowledge and thank the families and executors of the recently received bequests from which people with dementia, carers and their families have benefited.

fundraiSing

zumbathon fundraiserwHen Her fatHer waS diagnoSed witH dementia, belinda Sait decided to organiSe a two-Hour zumbathon to raise funds for alznSw.

fundraiSing – team memory JoggerSA final big shout out to our Team Memory Joggers for this year’s running season.

This year, almost 400 Memory Joggers took part in the Blackmores Sydney Running Festival. They raised over $21,000 and had a support group of 20 volunteers at the event, which was held on World Alzheimer’s Day, Sunday 21 September.

Would you like to become part of the team? Please contact Megan Thomas. t: (02) 8875 4625 e: [email protected]

Do you want to be part of the fight against dementia and help raise vital funds for AlzNSW? Here’s how:•Holdaneventofyourownthroughour

community fundraising program •Becomearegulargiverasa

Dementia Fighter•Donatethroughyourworkplace•Donateinlieuofgiftsforcelebrations•VolunteerTo find out more contact the AlzNSW Fundraising team. t: 1300 636 679 e: [email protected]

beQueStSTo meet the growing demands for our services, please consider supporting us by leaving a gift in your Will. Helping us in this very special way will allow us to continue to provide the vital support, education services and research to people with dementia, their carers and families. It is recommended that you consult your solicitor or a Trustee Company to prepare or modify your Will. We invite you to contact Erik Johannes Pill, our Bequest Executive, for a confidential chat on how you can help. t: (02) 8875 4606 e: [email protected]

Five years ago, my Dad Les was diagnosed with younger onset dementia. Watching my Dad, who was such a strong, intelligent and physically fit person, slowly deteriorate to a shadow of the man he used to be, has been truly heartbreaking for my sister and I, not to mention extremely frustrating for him.

Dad can no longer speak, shower or dress himself and needs assistance with all daily tasks. Needless to say, this is my reason for wanting to do anything I can to raise awareness about the disease that has taken my Dad from me.

About a year ago, I started teaching Zumba classes at my gym. Each week I witness the power music and dance has over people. I see people come into my class after a long, hard day and for the next hour they are able to forget about their worries and literally shake their blues away.

Dad has always had a big love of music and dance and even now a song or a dance always makes him smile.

So what better way to honour him, and raise money for AlzNSW, than with a two-hour Zumbathon!

My Zumbathon – Shaking Our Booties for Dad – was held on Sunday 28 September at Genesis Parramatta.

It was a great success with 30 people turning up to shake it for Dad and others living with dementia. We raised a total of $1786.50 for AlzNSW. I couldn’t be happier with this result! We received so much incredible feedback from everyone involved and hope to turn the Shaking Our Booties for Dad Zumbathon into an annual event.

If, like Belinda, you have a great idea for a community fundraising event, please contact Megan Thomas.t: (02) 8875 4625 e: megan.thomas@alzheimers. org.au

toP: Belinda and some fellow zumba participants on the day. Bottom: Belinda with her Dad les.

20 In touch SUMMER 2014

reSourceS

wHat’S new on tHe booKSHelflibrary and information ServiceS coordinator micHelle de mari reviewS tHe new additionS to tHe alznSw library.

For terms and conditions of sale see www.TabTimer.com.au . TabTimer™, ‘helps keep medications on time’™ and the TabTimer™ logo are trademarks of TabTimer Pty Ltd © 2011 ABN: 99 137 415 948

®

Medication Reminders Automatic Pill Dispensers

Vibrating Reminder Watches Vibrating & Talking Clocks

Peace of mind for medicines!

Contact TabTimer™ and helpto keep medicines on-time.

www.TabTimer.com.au 1300 TAB TIMER (1300 822 846)

these resources are available for loan to members of alznsw. If you would like to reserve them, please contact the library.t: (02) 9888 4218 e: [email protected]

dvd

staying Positive

Everything you do can be easier and more enjoyable with a positive attitude. A good mood can improve relationships, enhance learning, reduce stress at work and make the job more fun. There is also a strong connection between positive

emotions and wellness. Staying Positive is an exciting, energetic and entertaining

presentation of ideas you can use to get into a good mood and stay there. Topics covered include: a role-play of transferring attitudes in the work place; simple, yet effective strategies to lift your mood; how to use the power of the mind to see things differently and humour and laughter to relax and feel good.

booKS

running self-help groups in sheltered and extra care accommodation for people who live with dementia

Published by the Mental Health Foundation, this guide is based on its recent project in this area. The guide is

intended to help group facilitators and organisations wishing to set up and run similar self-help groups. It is aimed at those working with people living in sheltered or extra care housing, but it is hoped it will be of benefit to others working in dementia care.

creating culturally appropriate outside spaces and experiences for people with dementia: using nature and the outdoors in person-centered care(reviewed by wendy Brewin, creative spaces Project manager for the sensory trust)

This book is well worth a read. With nearly 20 or so contributors from diverse countries, it demonstrates that only by asking what nature means to an individual can we discover how important it is for them to have access to it, and how we can help that person get the best experience from nature and the outdoors.

booK and dvd

stand by me: promoting good communication with people living with dementia and their families

This book and DVD is designed to support training and education programs on person-centred care for people

living with dementia. The films on the DVD provide a practical demonstration of the principles of person-centred communication. These can be used with this teaching resource to help staff improve their communication skills, drawing on realistic situations.

in toucH - Dementia

Documents