HOPE OCTOBER 2012 issuE 12

in THis issuE

FEaTuRE aRTiClE 2FROM THE CEO 4 MaKinG liFE EasiER 5- BOOK REviEws 6- usEFul COnTaCT nuMBERs 7REsEaRCH PROjECTs, nEws and BREaKTHROuGHs 8uPCOMinG EvEnTs 12- sTaTE & TERRiTORy EvEnTs 13

EdiTORial

Welcome to Issue 12 of HOPE, our third issue for 2012.

HOPE is Alzheimer’s Australia’s national newsletter for younger people with dementia, their care partners, family and friends, health professionals, care staff and everybody with an interest in younger onset dementia.

Our Feature Article on pages 2 and 3 describes a new service Younger Onset Connections, launched by UnitingCare Ageing in the Hunter region of NSW in July of this year. One of the Younger Onset Connections group members, Wayne Helder, shares his personal story of coming to terms with his dementia diagnosis at age 48. He describes how the service is helping him get on with life. Thank you to Wayne and the team at UnitingCare Ageing for submitting this article.

Dementia Awareness Week (DAW) ran from 21st to 28th September, incorporating World Alzheimer’s Day on September 21st. DAW is Alzheimer’s Australia’s national centrepiece for community dementia awareness activities each year.

Those of you who read the July issue of HOPE will know that the theme for DAW 2012 was “Brain Health – Making the Connections”. This theme was supported by the launch of Alzheimer’s Australia’s new dementia risk reduction program Your Brain Matters which focuses on the links between brain, body and heart health.

DAW 2012 awareness activities reached a cumulative audience of over 20 million people and achieved an advertising space rate equivalent to $3 million, thanks not only to the launch of Your Brain Matters, but also the coincident release of two significant reports - The World Alzheimer Report 2012: overcoming the stigma of dementia by Alzheimer’s Disease International, and Dementia in Australia by The Australian Institute of Health and Welfare (AIHW).

You can read a little more about Your Brain Matters and the latest prevalence figures for younger onset dementia in From the CEO on page 4.

In our Making Life Easier section on page 5, you’ll find out about Alzheimer’s Australia’s Library and Information

Feature article, page 2

HOPE Newsletter 1

THis issuE OF HOPE is suPPORTEd By FundinG FROM THE ausTRalian GOvERnMEnT undER THE

naTiOnal dEMEnTia suPPORT PROGRaM.

Service (LIS). This service is available across Australia. You’ll be amazed what you’ll find in our collection! Our LIS team have also reviewed five books to help you make your selection. Read their Book Reviews on page 6.

We also keep you up to date on Research Projects, News and Breakthroughs on pages 8-11 and advise you of Upcoming Events - from local coffee groups to our National Conference, see pages 12-15.

If you would like to share your story or inform HOPE readers about a service that supports younger people with dementia and their families, please contact me.

I hope you enjoy this issue. Please send it to your family, friends and networks, to help us raise awareness of the issues faced by people living with younger onset dementia.

Jenny WarrenAlzheimer’s Australia(02) 6254 4233 or email hope.news@alzheimers.org.au

Feature Article, Page 2

2 HOPE Newsletter

“yOunGER OnsET COnnECTiOns" HElPs iTs MEMBERs GET On wiTH liFE

Helping younger people living

with dementia, Younger Onset

Connections (YOC) was launched

in Newcastle, NSW, on 17th July,

2012. Borne from the Younger

Onset Dementia Working Group,

a sub-group of the Hunter

Dementia Interagency, the new

service offers a day program

for people under 65 who have

memory concerns or are

living with dementia.

Speaking at the launch, Uniting Care Ageing Regional Director, Bryan McLoughlin said the service was developed in response to local studies proving a need to reach out to people living with memory concerns and dementia.

“With around 24,000 people in Australia living with some form of younger onset dementia, many in their 40s and 50s and some in their 30s, more attention is needed now and into the future to create relevant care and support systems which promote quality engagement and fulfilment in life” Mr McLoughlin said.

Established by UnitingCare Ageing in November 2011, the Younger Onset Connections service is designed on a ‘meeting place’ model, facilitating social participation and companionship and supporting local people to maintain their independence and connections within their community.

Now with six members, the group determines the activities that will be undertaken based on their own interests. Some activities - such as fishing - will involve a few members, while other activities - such as UnitingCare Ageing care worker Stephen taking a member to a Newcastle Knights football match - will be one-on-one.

The regular weekly gatherings offer members the opportunity to enjoy companionship, connect with others to talk about their hobbies and interests, engage in some meaningful discussion and activities like boules, Wii and chess, share a nutritious lunch and offer each other support.

Even though they are experiencing concerns with their memory at a younger age than might be expected, the Younger Onset Connections day service helps participants to stay involved and enjoy their interests; like Wayne who keeps busy as a gardening volunteer. Read Wayne's story on the next page.

Importantly, the service also provides support for carers and family members whose lives will change markedly as a result of their loved one’s diagnosis. Carers, partners, relatives and friends speak of the dramatic impact on their plans with their loved one such as putting aside overseas travel and other activities they had planned to do together. The huge impact of the condition makes supporting family carers an essential and indeed necessary element of this service.

Uniting Care Ageing Service Coordinator, James Magin coordinates YOC volunteers. "Volunteers are instrumental in helping clients engage in leisure activities such as cards and Wii games at the weekly ‘meeting place’ gatherings." James said. "Kaye is one of our volunteers whose mother lives in a UnitingCare Ageing facility adjacent to the YOC ‘meeting place’. Being the same age as some of our clients, she decided to dedicate some time to help us provide this special service. New volunteers are very welcome and encouraged to apply."

Endorsing the new service UnitingCare Ageing Director, Steve Teulan says it exemplifies in many ways the type of service UnitingCare Ageing wants to provide. “People living with younger onset dementia are truly disadvantaged and vulnerable. The program builds on the specialist knowledge, reputation and relationships established from the development of the excellent day service for people with younger onset dementia operating on the Central Coast of NSW.”

The YOC program is for people in the Newcastle and Lake Macquarie areas of NSW. It is funded by NSW Government’s Ageing Disability and Home Care and operates its weekly gathering from Alzheimer’s Australia’s local Hunter Dementia and Memory Resource Centre at Hamilton.

For Hunter area Younger Onset Connections service or volunteer enquiries please call James Magin, Uniting Care Ageing Service Coordinator, on (02) 4967 5172.

Photos: (Cover) YOC members and staff: L-R – Jovo, Wayne, James Magin (UnitingCare Ageing Service Coordinator), Stephen (UnitingCare Ageing Carer), Barry and Michael. (This page) Members playing boules at the group’s ‘meeting place’, Alzheimer’s Australia’s local Hunter Dementia and Memory Resource Centre at Hamilton.

3 HOPE Newsletter

“The Younger Onset Connections service is helping me to get on with my life. I’m only 48 years old, so

I want to remain active and stay involved in my interests for as long as I can.

The day program staff and volunteers are an invaluable support for people like me aged under 65 who

have memory concerns or dementia. I was having some memory loss and the dementia discovery also

came with an epilepsy diagnosis.

I’ve had to give up my work as a cleaner and that put strain on my family, but through the service I do

volunteer gardening at the centre where the group meets so I feel like I’m doing something worthwhile

that gives me some satisfaction.

The social companionship offered and being able to get out to the footy or other social gatherings with

the help of the carers like my mate Stephen, has really helped me to keep positive about each day.

Knowing there’s someone in your corner like the service coordinator James, and the care workers and

volunteers makes a big difference to my outlook. Getting picked up and dropped off from home for the

weekly meeting is very helpful as many of the group don’t drive and it also gives my carer a break for

five hours.

If it wasn’t for services like this I’d be sitting in front of the TV and there’s more to life than that!’’

MEMBER's sTORyyOunGER OnsET COnnECTiOns GROuP MEMBER, waynE HEldER

"COMING TO TERMS WITH THE DIAGNOSIS OF DEMENTIA IS THE LAST THING I EXPECTED AT 48 YEARS OF AGE"

Wayne Helder enjoying his volunteer gardening work at

the Hunter dementia and Memory Resource Centre

4 HOPE Newsletter

FROM THE CEO

New prevalence figures - dementia in AustraliaOn September 27th, the Australian Institute of Health and Welfare released a report entitled Dementia in Australia. The report includes updated dementia prevalence figures which show that the number of people living with younger onset dementia in Australia is now estimated to be 23,900. This is significantly higher than previous figures and demonstrates the need for investment in Australian epidemiological studies to firm up the number of people living with younger onset dementia.

Antipsychotic medications overprescribed for people with dementia Antipsychotic medications are overused in Australia as a first-line response to managing behavioural and psychological symptoms experienced by people with dementia, particularly in residential aged care. Experts estimate that of the 50-100,000 people with dementia in Australia who receive antipsychotic medications, treatment is only clinically warranted in about twenty percent of cases.Alzheimer's Australia recently invited Professor Sube Banerjee, Professor of Mental Health and Ageing in the Health Service and Population Research Department at the Institute of Psychiatry, King’s College London, to Australia for a nationwide seminar series on this subject. You can read some of Professor Banerjee's comments on page 8. It seems unlikely that any one action will improve the situation and that there will be a need for coordinated action including increased regulation, education and enforcement of state and territory consent laws to treatments. We welcome the commitment made by the Minister for Mental Health and Ageing, Mark Butler, who convened a special roundtable discussion in late August on how to reduce the widespread overprescription of drugs. I attended that meeting and we look forward to working with the Government further to address this important issue.

Your Brain Matters: Australia announces world-first brain health program to tackle dementia epidemicOn September 16th Alzheimer's Australia announced the first dementia risk reduction program in the world to be publicly funded. The new program, Your Brain Matters* is designed to help cut soaring rates of dementia. It comes on the back of increasing evidence that looking after your brain, body and heart can help reduce your risk of developing dementia. The Australian Government is the first government globally to introduce public policy around dementia risk reduction through the Department of Health and Ageing, which means it is being recognised as a chronic disease and not just a normal part of ageing.It’s important to understand that while there is, as yet, no cure for dementia there are things we can all do now – like keeping your brain active, being fit and healthy and looking

*More information on Your Brain Matters: A Guide to Healthy Hearts & Minds can be found at yourbrainmatters.org.au

after your heart – which may help to reduce our risk of developing dementia, or slow cognitive decline in those already diagnosed with dementia. The launch of Your Brain Matters coincides with the release of a new evidence paper# by Alzheimer’s Australia’s Dr Maree Farrow and Elodie O’Connor which collated increasing evidence that suggests lifestyle and medical factors, particularly in midlife, can impact one’s risk of developing neurological conditions such as dementia.

dementia recognised as a National Health Priority AreaAlzheimer’s Australia congratulates the Australian Government on the decision by the Australian Health Minister’s Advisory Committee to make dementia a National Health Priority Area. This was announced on 10th August. For the first time we have an opportunity to address key failures in the health system in regards to dementia, such as access to timely diagnosis, quality of care in hospitals and raising community awareness about risk reduction strategies for dementia.The announcement, coupled with the Australian Government’s commitment of $268.4 million over five years to tackle dementia as part of the Living Longer. Living Better. aged care reform package, creates new opportunities to address areas that have long been neglected. It also signals increased opportunities for priority funding for research through the National Health and Medical Research Council.

Are you a dementia Champion?Thank you to the nearly 4,000 people who are showing their support for our Fight Dementia campaign by signing up as Dementia Champions. Our Champions come from all walks of life but are united in the fight against dementia. You can join thousands of your fellow Australians - from Federal and State Politicians - to celebrities as diverse as Maggie Beer and Mick Fanning - who all want to see a World Without Dementia. Our 2012-13 Fight Dementia campaign focus is on increased government investment in dementia research and we're asking the Australian Government for $200 million over five years. I encourage you to join up today.To sign up as a Dementia Champion, go to http://campaign.fightdementia.org.au/ - you can also join us on Facebook, www.facebook.com/fightdementia

Glenn ReesChief Executive OfficerAlzheimer’s Australia #The evidence paper, Targeting Brain Body and Heart for Cognitive Health and Dementia Prevention: Current Evidence and Future Directions, is available on our website, www.fightdementia.org.au

5 HOPE Newsletter

MaKinG liFE EasiER did yOu KnOw THaT alZHEiMER’s ausTRalia Has a liBRaRy and inFORMaTiOn sERviCE?

The Library and Information Service (LIS) supports family carers, people with dementia, health professionals, community care workers and the general community by providing access to a wide range of information and resources.

While the collection’s central focus is on dementia, you will find information on topics ranging from caring and activities for people with dementia; from behaviour to dementia design; from brain science to staff training and development.

The collection contains hundreds of items specifically about younger onset dementia, including resources for children and families of younger people with dementia.

What does the Library and Information Service offer?~ Loans of books, DVDs, CDs~ Online library catalogue ~ News Service - subscribe to receive weekly updates on new book titles, journal contents etc.

Our staff are available to help you find a certain article or book title, or to help connect you with the resources you’re seeking.

The Library and Information Service is available across Australia. To view our extensive collection online click here: Online Catalogue URL <http://liberty4.alznsw.asn.au:8080/liberty/libraryHome.do>

To find out about your local library; for more information on how you can access the Service; or to ask about membership and borrowing, contact your State or Territory Alzheimer's Australia office via the National Dementia Help Line on 1800 100 500 or email:

ACT act.admin@alzheimers.org.auNSW nsw.library@alzheimers.org.auNT nt.admin.d@alzheimers.org.auTasmania tas.admin@alzheimers.org.auQLD qld.library@alzheimers.org.auVictoria library@alzvic.asn.au WA librarywa@alzheimers.org.auSA sa.library@alzheimers.org.au

RECOMMEndEd REadinG - 5 BOOK REviEws

On the next page you will find book reviews submitted by our Library and Information Service staff. Our Librarians were asked to recommend books they thought would be of interest to the younger onset dementia community. We hope they spark your interest!

Their selections come from Australian, New Zealand, UK & American authors and all are available for loan from our Library and Information Service. Although some of these books were published in 2005 and 2008, they are still very popular!

Contact your local Alzheimer's Australia Library to check availability.

6 HOPE Newsletter

RECOMMEndEd REadinG – 5 BOOK REviEws

FROM nEw sOuTH walEs“To Love What Is” by Alix Kates Shulman (2008)This memoir is a love story. It is inspirational, engaging and intimate. The writer shares the tumultuous events in her marriage which result when her husband, who has early signs of dementia, suffers severe brain damage after a fall.

The author openly shares her innermost feelings and struggles. Within the diabolically changed circumstances of their lives there is much sadness and despair at times but this is countered by a sense of striving to truly live fully as a couple and as individuals. They are forced by the unfolding new reality of “what is” to redefine their relationship.

The title conveys the strength of her determination – at first with her husband’s needs being paramount and then, finding a precarious balance, as she rediscovers her own life.

FROM wEsTERn ausTRalia“The black hole : the challenges of young onset Alzheimer's” by Eileen Smith (2012)No light can escape from a black hole. It has, in effect, disappeared from the visible universe - it has become invisible. Just like the under-65s when they are diagnosed with 'young onset Alzheimer's disease'. They do not fit the commonly understood model of dementia, which is that it affects only older people.

In 2001, at the age of 54, Ray Smith, a busy export manager, husband, father and a new grandfather, was diagnosed with young onset Alzheimer's. Neither he nor his wife Eileen had any knowledge or experience with the disease. They fell into a system that split care into 'the under 65s and the over 65s', but services for the under 65s didn't recognise Alzheimer's as a disability. It was an uphill battle, not only having to adjust to the diagnosis, but also having to cope with expensive, unsubsidised medication, which at its best, slowed its progression.

Five years after Ray's diagnosis, Eileen reached a point where she was despairing of ever finding suitable and age-appropriate care for Ray. She joined Alzheimer's New Zealand, later becoming a board member, and has worked tirelessly for all sufferers.

The Black Hole tells not only of their struggle through the system and Ray's inevitable decline over the years, but how they both shared a passion to spread awareness of the disease. It is a story of

hope, strength, stubbornness and, most of all, love.

FROM QuEEnsland“Still Alice” by Lisa Genova (2009)Alice Howard is a Harvard professor of cognitive psychology who is diagnosed with early (younger) onset Alzheimer’s disease, which she has inherited. She is an extremely intelligent person who lectures all over the world. She and her equally successful husband, who is also a professor, have three children.

“Still Alice” describes the emotions that Alice experiences, from the trepidation she felt when telling her husband about her diagnosis, to the embarrassment of forgetting lectures and losing items and the sheer frustration of not being able to find her way home.

Alice’s particular type of Alzheimer’s disease is inherited and she is worried that she in turn may have passed the gene to her children.

Genetic testing reveals that her eldest daughter has inherited the same gene, and the book describes the guilt Alice then feels.

As the book goes on, Alice feels humiliated by all the changes that Alzheimer’s brings - the memory loss, the loss of her career, the spatial disorientation.

As she looks back over her life, she starts to question whether all the time spent at work rather than with her family was worth it. Her husband doesn’t deal well with the changes and spends a lot of his time investigating the possibilities presented by new drugs and participation in clinical trials.

All in all, while it tells a tragic story, it is compelling, hopeful and beautifully written.

FROM viCTORia “Losing Clive” by Helen Beaumont (2008)In his mid-forties with a successful career as an Army officer, Clive began to experience difficulties. Both verbal and written communication were impacted and became inadequate for the job he held. He was made redundant in 1992; he was 45 and his children were 3 and 4. After a year of failed job applications and difficulties in coping at home, Clive was forced to look for a reason for his changed behaviour. Clive was diagnosed with early onset dementia in December 1993. He never worked again.

Clive's wife, Helen, tells of the next six years living with Clive. The book describes the new challenges associated with Clive’s condition, all the while managing her ongoing responsibilities as a wife, a mother and an employee. She also describes the successful founding and development of The Clive Project, a registered charity set up by Helen and others in a bid to establish support services for people with younger onset dementia. Clive died in 1999. He was 51.

This book looks candidly at the different set of circumstances that are presented when someone is diagnosed with this disease at a time in their life when expectations are usually about all things family and career.

FROM sOuTH ausTRalia “Dancing with dementia” by Christine Bryden (2005)Christine was a top civil servant and single mother of three children when she was diagnosed with dementia in 1995 at the age of 46. This is the second book written by Christine Bryden. It is a follow up to “Who will I be when I die?” written under her previous name Christine Boden in which she provides a unique insight into how it feels to be gradually losing ability to undertake simple every day tasks.

In Dancing with Dementia, Christine shares her understanding of the meaning for her existence and the purpose for her life. Chapter 4 is titled “I know who I’ll be when I die” taking the reader on a thoughtful exploration of how dementia challenges our ideas of personal identity and of the process of self-discovery it can bring about. The book vividly describes her experiences of living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband Paul, she continues to lead an active life nevertheless, and explains how professionals and carers can help.

7 HOPE Newsletter

MaKinG liFE EasiER continued

BOOK RElEasE - alZHEiMER's ausTRalia viCTORia

“WE CAN, WE CAN, WE CAN: Purpose and Pleasure for People Living with Dementia.”

Encouraging and inspiring people with dementia to engage with activities that assist them to continue to lead lives full of purpose and pleasure is the goal of a new book released by Alzheimer’s Australia Victoria.

The book, WE CAN, WE CAN, WE CAN: Purpose and pleasure for people living with dementia is filled with a variety of activities suitable for one-to-one interaction in a person’s home or for group sharing in a community or residential setting.

The activities will appeal to a wide range of tastes, preferences, ages and capacities. In its 148 pages you will find activities for the artistically or musically inclined, lovers of nature and gardens, cooks, sports fans, the home handy-person, quiz and games enthusiasts, those who

enjoy quiet times and relaxation...there’s even a chapter titled FOR THE MEN.

These activities have been developed to encourage family and friends to be involved as well as being appropriate for those working in aged care and organising group activities. Each activity is described in detail, from the material required, through the steps involved in conducting the activity, to the environment best suited to the activity and the verbal and non-verbal prompts that may assist in achieving the best outcomes.

The book also incorporates key Montessori principles which aim to enable carers to enhance the quality of life of those they care for through mental stimulation, communication and social engagement.

How much is the book?

$22 Alzheimer's Australia members / $27 non-members + postage and handling (details can be found on the order form).

Where can you find the order form?

On the Alzheimer’s Australia Vic website. Go to http://www.fightdementia.org.au/vic then click on Resources to download – Vic, or call the National Dementia Helpline on 1800 100 500 or email alz@alzvic.asn.au

usEFul COnTaCT nuMBERs naTiOnal dEMEnTia HElPlinE 1800 100 500

alZHEiMER’s ausTRalia 1800 100 500 OR www.FiGHTdEMEnTia.ORG.au

dEMEnTia BEHaviOuR ManaGEMEnT advisORy sERviCE (dBMas) 1800 699 799 OR www.dBMas.ORG.au

COMMOnwEalTH REsPiTE and CaRElinK CEnTRE 1800 052 222

EMERGEnCy REsPiTE (aFTER HOuRs) 1800 059 059

HOPE Newsletter8

REsEaRCH PROjECTs, nEws and BREaKTHROuGHsanTiPsyCHOTiC MEdiCaTiOns and THEiR inaPPROPRiaTE usE FOR PEOPlE wiTH dEMEnTia

PROFEssOR suBE BanERjEE's ausTRalian TOuRInternationally recognised dementia expert, Professor Sube Banerjee, recently visited every capital city in Australia to speak at a nationwide seminar series for Alzheimer’s Australia on antipsychotic medications and their inappropriate use for people with dementia.Professor Banerjee says that antipsychotics are used as a form of chemical restraint and are dangerously overused in managing behaviours associated with dementia. They can lead to long-term negative side effects and even premature death. He warned that governments, including in Australia, must tighten up the use of antipsychotic medications for people with dementia. “The inappropriate use of antipsychotics to manage behavioural and psychological symptoms of dementia (BPSD) is widespread and should be a major concern for health services and policy makers,” Professor Banerjee said. “There are often far better and more effective ways to deal with the difficult behaviours sometimes associated with dementia that do not involve these medications which can have severe adverse effects, including stroke and death." “This overuse stems from a disregard of the value and the human rights of people with dementia who are stigmatised and are often not given access to the same level of care as people with other chronic conditions. If there are changes in behaviour, such as wandering, aggression and depression, doctors need to talk with the patient and their family carers to gain and understanding

of what is troubling them and what they need, not reflexively prescribe potentially harmful antipsychotics.” Professor Banerjee said this is happening in Australia and around the world. “In 2011, the National Prescribing Service in Australia issued an official warning about the serious and potentially life threatening side effects of the medications,” Professor Banerjee said. “Yet they continue to be used as the first response to behavioural symptoms in many cases.” Professor Banerjee is the author of a report The use of antipsychotic medication for people with dementia: Time for action commissioned by the UK Government. The report suggests that 180,000 people with dementia in the UK were receiving antipsychotics, but only about 20 per cent of these people derived some benefit from the treatment. Alarmingly, it is estimated that the use of this medication for people with dementia led to 1,620 cerebrovascular adverse events and an additional 1,800 deaths per year, with many other people suffering adverse effects including Parkinsonism, chest infections, confusion and accelerated cognitive decline.“Since the report, the UK has put in place strategies to reduce the use of antipsychotics to a level where the benefits outweigh the risks. Evidence suggests that these strategies are starting to work.” To read Professor Banerjee’s report for the UK Government click this link: Report for the Minister of State for Care Services (UK)

REPORT On anTiPsyCHOTiCs and dEMEnTia On aBC's laTElinE PROGRaMA report by ABC’s Lateline on 16 August, 2012 highlighted a number of examples of inappropriate use of antipsychotic medications with people living with dementia, including the coronial inquest into the death of Mr John Arthur Burns, a person living with dementia in South Australia who died of a cerebral infarction while receiving high doses of the antipsychotic drug haloperidol.

The report also featured an interview with David Le Couteur, Professor of Medicine from the University of Sydney who estimated that inappropriate prescribing of antipsychotic medications to people with dementia in Australia may be causing hundreds or even thousands of avoidable deaths each year.

FuRTHER inFORMaTiOn and adviCEAlzheimer’s Australia encourages anyone concerned about the use of antipsychotic medications to speak to their GP, or contact:1. The National Dementia Helpline (1800 100 500; www.fightdementia.org.au)2. The Dementia Behaviour Management Advisory Service (1800 699 799; www.dbmas.org.au)

Click here to read Alzheimer’s Australia’s position statement on Antipsychotic Medications And Dementia, URL: http://www.fightdementia.org.au/research-publications/antipsychotic-medications-and-dementia---alzheimers-australia-position-statement-.aspx

HOPE Newsletter9

REsEaRCH PROjECTs, nEws and BREaKTHROuGHs

nEw REsEaRCH PROjECT : THE iMPaCT OF yOunGER OnsET dEMEnTia On THE PERsOn and THEiR FaMily

Are you a young person up to the age of 24 years who has a parent with younger onset dementia...or a parent who is living with younger onset dementia...or caring for a person living with younger onset dementia?

If so, and you live in NSW, a project team at the Sydney Medical School, University of Sydney, would like to invite you to participate in a new qualitative research project.

The purpose of the study is:• To explore both the experiences and support

needs of young people with a parent with younger onset dementia.

• To gain the perspectives of parents with younger onset dementia and their carers about the impact on family life.

• To develop supports in the future for young people and their families with similar issues and concerns.

Participants will be interviewed for about an hour.

The interviewer will ask about:• Your experience of having a parent with

younger onset dementia or being a parent;• Living with younger onset dementia or caring

for someone with younger onset dementia;• Stories that help us understand the impact of

younger onset dementia on family life;• What ideas you have about how families in

similar situations could be supported.

Later in the study there will be an option for young people up to the age of 24 years to attend a focus group.

If you are interested in taking part in the study, or want to know more, please contact:

Karen Hutchinson, Research FellowPhone: (02) 9477 9127 Email: karen.hutchinson@sydney.edu.au

OnlinE suRvEy aBOuT advanCE CaRE PlanninG and dEMEnTia

Advance care planning is the process of thinking about and communicating how you would like health and lifestyle decisions to be made for you if you could not speak for yourself at some time in the future. One reason this happens is if a person develops dementia and gradually loses the capacity to make their own decisions.

As part of their work under the National Quality Dementia Care Initiative, the Consumer Dementia Research Network recognised the need to increase the amount of advance care planning that is done by people who are at risk of developing dementia or have early dementia. The Network has funded a project to develop a nationally focused website with the aim of making advance care planning more understandable and accessible.

The team running the project have developed a confidential online survey to get input in the early stage of the project from as many people as possible, including people with early stage dementia, carers and healthcare and other professionals. The survey will take up to 10 minutes to complete and will be available online until the end of October 2012.

All interested people are invited to complete the survey by clicking the link https://www.surveymonkey.com/s/ACP_and_dementia

Alternatively, you can provide input to the project by contacting the Project Manager – Chris Shanley – by phone on 0423 842 781 or by email to Christopher.Shanley@sswahs.nsw.gov.au

10 HOPE Newsletter

REsEaRCH PROjECTs, nEws and BREaKTHROuGHs continued

yOGa May EnHanCE COPinG sKills and QualiTy OF liFE FOR CaRERs OF PEOPlE livinG wiTH dEMEnTia

Scientists have identified yoga as a possible method for reducing stress for carers of people living with dementia, according to an article published in the International Journal of Geriatric Psychiatry.

Dr Helen Lavretsky and a team of international researchers from the United States (US) conducted a pilot study to examine the effects of yoga and general relaxation on mental health and cognitive functioning in families caring for a person with dementia. This area of research is particularly relevant as nearly 50% of carers in the US suffer from clinical depression associated with stress.

The researchers recruited 39 carers of people living with dementia to participate in the study. The participants were assessed for symptoms of depression as well as measurements of cognitive functioning.

The researchers randomly split participants into two groups.

One group listened to relaxation music for 12 minutes per day for 8 weeks and the other practiced a particular type of yoga for the same period of time.

After comparing baseline information to a follow-up, the researchers found that individuals in the yoga group had a significant reduction in symptoms of depression and improvement in mental and cognitive functioning compared with the relaxation group.

Dr Lavretsky suggested that a possible factor which could have influenced this outcome was the combination of mental and physical benefits of yoga. “Although the relation between mental and physical health has previously been documented, the mechanistic links are beginning to be understood at a cellular level”.

For more information go to: Research Link

wHO REads HOPE?

HOPE is read by people with younger onset dementia, their carers and family, people working in a wide range of community organisations, the health sector, government (local, state and federal), residential care service providers, dementia advisors, health promotion organisations and the media.

Each reader has their own reason for wanting to learn more about the community affected by younger onset dementia, whether it be by reading the personal stories from people with younger onset dementia and their carers or family or friends, current scientific or social policy research, or simply finding out about available services and support.

You can help make HOPE more interesting for your fellow readers by sending your story or suggesting a topic that you think will interest readers. I look forward to hearing from you!

How to subscribe and unsubscribe from HOPE

We want to ensure HOPE is getting to the right people. If you know someone who would like to receive HOPE via email, please ask them to email me at hope.news@alzheimers.org.au

If you no longer wish to receive HOPE by email, please contact me and ask to be removed from our mailing list.

This and all previous issues of HOPE are published on Alzheimer’s Australia’s website at http://www.fightdementia.org.au/research-publications/hope-newsletter.aspx

Jenny Warren, Editor, Hope Newsletter

Alzheimer’s Australia

E: hope.news@alzheimers.org.au

HOPE Newsletter11

REsEaRCH PROjECTs, nEws and BREaKTHROuGHs

validaTiOn OF THE ‘KiCa' in viCTORia

The extent of dementia in Indigenous communities is still largely unknown, however, past research indicates a higher prevalence than in the non-Indigenous population. Some studies suggest that the rate for Indigenous people over the age of 65 could be as much as 4 to 5 times higher than non-Indigenous peoples. The rates in Indigenous communities for people under 65 could be even higher. Determining the prevalence of dementia and its subtypes is important in our bid to tackle dementia and to close the gap between Indigenous and non-Indigenous health.An important step in establishing dementia prevalence in Indigenous communities is to ensure that culturally appropriate cognitive screening tools are used.

The KICA (Kimberly Indigenous Cognitive Assessment) was developed in order to address the lack of culturally suitable screening tools and has since been validated in parts of Western Australia, the Northern Territory, and Queensland.

In Victoria, a study will be undertaken in the coming months in order to validate a modified version of the KICA in Indigenous people aged 50 years and over residing in a regional (Mildura) or urban (Brunswick) area. The project is being conducted by Dr Dina LoGiudice (co-developer of the KICA tool) and Professor Stephen Gibson, both from the University of Melbourne and Monash University, and John Price from Alzheimer’s Australia Vic. The study has ethics approval from Monash University and phase one of the project involving two focus groups comprising Elders, carers and clinicians will commence once the key expert panel have discussed the project. Alzheimer’s Australia Vic has formal agreements with the Mildura Aboriginal Corporation and ACES (Aboriginal Elders Community Service, Melbourne) to participate and collaborate on the study as well as agreement to collaborate with NARI (National Ageing Research Institute, Melbourne).

dEMEnTia is THETHiRd BiGGEsT KillER

in ausTRaliayOu COuldBE THE FiRsTTO CHanGE THaT

Dementia attacks 1600 Australians every week. And there’s no cure.

We promote and fund dementia research to ensure a better life for people living with the condition and ultimately find a cure.

2012 PhD Scholarship applications now open.

This year the Alzheimer's Australia Dementia Research Foundation

is offering nine Scholarships including one specifically in Younger Onset Dementia Research

valued at $30,000 per year for 3 years.

Apply online at: http://alzheimers.smartygrants.com.auApplications Close: 31/10/2012

For more information: Phone: Angela McKeegan on (02) 6278 8910 Email: angela.mckeegan@alzheimers.org.au Visit: dementiaresearchfoundation.org.au

12 HOPE Newsletter

End OF liFE PlanninGPlanning for the end of life is critical yet often neglected. Research shows that people who have completed some form of advance care planning are more likely to receive end of life care aligned to their wishes than those who have not.

Professor Colleen Cartwright will be presenting a number of free seminars around Australia in October that will provide the latest information about cognitive changes associated with dementia, changes to capacity, choice and decision making, the importance of advance care directives and end of life planning.

Who should attend? Individuals who are interested in learning about Advanced Care Directives and End of Life Planning are invited to attend.

Who is Colleen Cartwright? Professor Colleen Cartwright is Foundation Professor of Aged Services and Director of Aged Services Unit at Southern Cross University. She has extensive teaching and research experience in ageing, ethics and medical decisions at the end of life, with publications in major journals. She designed the Advance Health Directive and Enduring Power of Attorney forms that are part of the Queensland Powers of Attorney Act (1998) and amended those to suit NSW legislative provisions. She has been a member of the Australian Association of Gerontology for more than 20 years.

Bookings Essential. To reserve your place or for more information on any of the seminars, please contact the relevant Alzheimer’s Australia office as shown below.

EDITOR’S NOTE: A number of the seminars had already taken place prior to publication of this newsletter. As at HOPE's publication date, the following seminars were still to occur.

NT - Darwin (Consumers Seminar)

NT - Darwin (Professionals Seminar)

ACT - Canberra (Consumers & ProfessionalsSeminar)

When 22 October, 10:00am-12:30 pm 22 October, 5:00-7:00 pm 31 October, 1:00-4:30 pmWhere Nightcliff Community Centre Nightcliff Community Centre Southern Cross Club, Woden

Contact Alzheimer’s Australia NT on (08) 8948 5228 or call the National Dementia Helpline on 1800 100 500 or email: nt.admin.d@alzheimers.org.au

Alzheimer’s Australia ACT on (02) 6255 0722 or call the National Dementia Helpline on 1800 100 500 or email: ACT.admin@alzheimers.org.au

Call FOR PaPERs nOw OPEn!Alzheimer’s Australia invites you to submit an abstract for presentation at the

15th National Conference.

PRESENTATION FORMAT

Abstracts may be submitted for the following presentation types:• 20-minute oral presentation (plus five minutes question time)

• Poster display (Posters should not exceed A0 size – 1189mm x 841mm)

Submissions close at 5pm on 30th November 2012Visit the conference website www.alzheimers2013.com for further details.

uPCOMinG EvEnTs

13 HOPE Newsletter

alZHEiMER’s ausTRalia sTaTE and TERRiTORy EvEnTsAlzheimer’s Australia organises events, courses and support groups for people with younger onset dementia and their family, carers and professionals working in dementia care and support roles. Events are organised in all states and territories, in all capital cities and many regional centres.

For information on upcoming events near you, go to Alzheimer’s Australia’s website www.fightdementia.org.au and click on ‘Choose your state’, then select your state or territory from the list or call the national dementia helpline on 1800 100 500.

Here’s a selection of upcoming events that may be of interest to readers of HOPE.

viCTORia

alZHEiMER's ausTRalia viC inviTEs yOu TO jOin us aT OuRyOunGER OnsET dEMEnTia CaFE Alzheimer’s Australia Vic run a café style support program for people living with Younger Onset Dementia and their family members and friends. The events are held at our Hawthorn office and will reflect the needs of the Younger Onset Dementia core group. The cafés are a fantastic place to meet other people, share experiences, offer each other support and receive resources and information relating to younger onset dementia.

Upcoming Dates

Thursday 8th November, 12.00 – 2.00pm

Sunday 2nd December, 12.00 – 3.00pm

Where Alzheimer’s Australia Victoria, 98-104 Riversdale Rd, Hawthorn, 3122

Cost Free

For further information please contact Belinda Nixon on (03) 9815 7800.The Younger Onset Dementia Café is proudly supported by the Wood Family Foundation.

Younger onset dementia – for health care professionalsBetter understand the impact of dementia on the younger person and their family as well as their distinctive care needs. Suitable for professionals who already have an understanding of dementia.When Wednesday 21st November, 9:30am – 12:30pmWhere Alzheimer’s Australia Victoria, 98-104 Riversdale Rd, Hawthorn, 3122Cost FreeEnquiries and further information:Donna Mercier (03) 9815 7800 or call the National Dementia Helpline on 1800 100 500.

Younger Onset Dementia Online Forum LaunchAn event for both consumers and service providers to launch our new Younger Onset Dementia Online ForumWhen Wednesday 5th December from 12.00 to 2.00pmWhere Alzheimer’s Australia Victoria, 98-104 Riversdale Rd, Hawthorn, 3122Cost Free

Enquiries and further information:Rosie Ball (03) 9815 7800 or call the National Dementia Helpline on 1800 100 500.

sOuTH ausTRalia Younger Onset Dementia Evening GroupsA suite of evening information and support groups for people with a diagnosis of younger onset dementia and their family members. The evening also includes a support group for family members living with younger family members in residential care. When 3rd Wednesday of each month, 6:00 – 8:00pm Where Alzheimer’s Australia SA, 27 Conyngham Street, Glenside 5065 or other locations in metropolitan AdelaideCost FreeEnquiries & registration of interest:Please register via the National Dementia Helpline on 1800 100 500.

Living with younger onset dementia workshopA workshop for people who have recently been diagnosed with younger onset dementia and their family members who are living in the community. When 31st October, 6:00 - 8:00pm Where Location to be arranged within metropolitan AdelaideCost FreeEnquiries & registration of interest:Please register via the National Dementia Helpline on 1800 100 500.

South Metropolitan Younger Onset Dementia support groupWhen 2nd Tuesday of each month, 1:00 - 3:00pm Where The Chapel Room, The Corner Church, Cnr Diagonal and Oaklands Roads, Warradale, Adelaide 5046Cost FreeEnquiries & registration of interest:Please register via the National Dementia Helpline on 1800 100 500.

14 HOPE Newsletter

sTaTE and TERRiTORy EvEnTs continued

TasMania YOD Support GroupFun and Friendship. Lunch included.When Weekly, Mondays 10:30am – 2:00pmWhere The Old Vicarage Respite House, St Johns Avenue, New Town, 7008Cost FreeEnquiries:For further information, please call Rhonda Vickery or Pat Baines on (03) 6279 1101 or call the National Dementia Helpline on 1800 100 500.

ADVANCE NOTICE: In December the YOD Support Group will be hosting our annual Christmas Carol Service at St Johns Church, Hobart, followed by a BBQ luncheon – date TBA. For further information, please call Rhonda Vickery or Pat Baines on (03) 6279 1101

Social Luncheon GroupA monthly lunch for people with dementia and their carers. Many of our regular ‘socialisers’ are people with younger onset dementia. Come along - make new friends - try a different venue each month!When 2nd Tuesday of each monthUpcoming date & venue Tuesday 13th November - Hotel Soho, 142 Davey Street, HobartCost Buy your own lunch & drinksRSVP essential Affordability has been considered when selecting venues. Please RSVP at least 1 day prior to luncheon. Contact Shirley or Suellen on (03) 6279 1100.

Opals Support GroupA group for carers of people with dementia, with many of our participants caring for a person with younger onset dementia. Our monthly chats provide an opportunity to share experiences, challenges, humorous happenings and information. Provides contact with other carers in a confidential and caring group.When 1st Thursday of each month, 10:30am – 12:30pmWhere The Old Vicarage Respite House, St Johns Avenue, New Town, 7008Cost Free. Tea & coffee provided. A morning tea plate to share would be appreciatedEnquiries:For further information, please call Rhonda Vickery or Pat Baines on (03) 6279 1101 or call the National Dementia Helpline on 1800 100 500.

Cognitive Stimulation Program This group program is for people with mild cognitive impairment (MCI) or mild/moderate stages of dementia. The program aims to slow down cognitive decline by engaging participants in a range of evidence-based cognitive and social activities. When Weekly, Wednesdays 1:00 - 3:00pm starting Wednesday 31st October Where Alzheimer’s Australia TAS, Hobart Office, 85 Creek Rd, New Town, 7008Cost FreeEnquiries & registration of interest:Please contact Sarah Elder, Sinead Paine or Anna Wolf on (03) 6279 1100 or call the National Dementia Helpline on 1800 100 500.

wEsTERn ausTRalia Rockingham Younger Onset Dementia Associates (YODA) GroupThis social group meets fortnightly and caters for people with dementia under the age of 65 and their support person. The group regularly attends activities and outings such as trips to Serpentine Falls, barbeque lunches and lawn bowling.When Every 2nd Wednesday, 9:30am - 2:30pm (Upcoming meeting dates: 17th & 31st October, 14th & 28th November etc.)Where Suite 9, Lotteries House, 80 Civic Boulevarde, RockinghamCost $8 plus spending moneyEnquiries & registration of interest:Barry Garnham, Alzheimer’s Australia WA on (08) 9535 8772 or email barry.garnham@alzheimers.org.au or call the National Dementia Helpline 1800 100 500.

The Saturday ClubThis program enables younger people with dementia to continue engaging with the local community through outings decided by club members.When Every Saturday, 10:00am – 3:00pmWhere Mary Chester Centre, 9 Bedbrook Place, Shenton Park Cost $8 plus spending moneyEnquiries & registration of interest:Marlene Grogan, Alzheimer’s Australia WA on (08) 9388 2800 or email marlene.grogan@alzheimers.org.au or call the National Dementia Helpline 1800 100 500.

15 HOPE Newsletter

sTaTE and TERRiTORy EvEnTs continued

aCT Walking GroupAn active social group, for people with younger onset dementia to meet, socialise and exercise. When Weekly, Tuesday morning, 10:00 - 11:30amWhere Alzheimer's Australia ACT, 159 Maribyrnong Ave KaleenCost Free, buy own refreshments at Kaleen Sports ClubEnquiries: All attendees need to meet with a staff member of Alzheimer’s Australia ACT prior to joining the group, to ensure it’s the most suitable group for them. For more information, please call Alzheimer’s Australia ACT on (02) 6255 0722 or call the National Dementia Helpline 1800 100 500.

QuEEnslandYOD Memory Lane Cafe GroupOur monthly social support group for people with younger onset dementia and their carers. Come along and chat, make new friends and socialise! When Monthly, on a Sunday (dates vary), 2:00 - 4:00pmUpcoming Date Sunday, 18th November, 2:00 - 4:00pmWhere Labrador Community Hub, 57 Bìllington Street, Labrador (Gold Coast) Cost Free, refreshments supplied.Enquiries: If you would like to attend, please call Alzheimer’s Australia QLD prior to the event, and speak to our staff to ensure it’s the most suitable group for you. You can contact Alzheimer’s Australia QLD on (07) 3895 8200 or call the National Dementia Helpline 1800 100 500.

nswActivities and events are scheduled in a number of locations around the state. Please call the National Dementia Helpline on 1800 100 500 for information on activities in your area.

SYDNEYYounger Onset Dementia Living With Memory Loss program being held in the evening to cater to working carers commenced on the 6th October. Younger Onset Dementia Carer Support GroupsWhen MonthlyWhere Alzheimer's Australia NSW North RydeCost FreeEnquiries: To learn more about these groups please contact the National Dementia Helpline on 1800 100 500 or Lyndell Huskins on (02) 8875 4615.

s T O P P R E s s

2012 dementia awareness week

Numerous activities and events took place around the country involving people with dementia, their families, their carers and friends, and the general community.

Media coverage on radio, television, newspapers and social media sites was extensive, reporting on everything from revised Australian dementia prevalence figures in the AIHW’s report Dementia in Australia – to community events such as steam train rides, street marquees and Memory Walks – and the launch of Alzheimer’s Australia’s dementia risk reduction program, Your Brain Matters.

One of the ‘headline’ events was a nationwide series of seminars by the internationally renowned Dr Serge Gauthier, who spoke about the possible causes of dementia and the prospects of new treatments, the evidence base for reducing the risk of dementia and slowing the progression of the disease and reducing its prevalence.

Dr Gauthier’s ‘support act’ for his seminar organised by Alzheimer’s Australia Victoria was Mark Seymour, former lead singer of Australian band Hunters and Collectors. Mark performed “Classrooms and Kitchens”, a song he wrote for his mother, Paula, who has Alzheimer’s disease.

Mark Seymour on

stage with Alzheimer's

Australia Victoria

CEO, Maree McCabe

Mark performing “Classrooms and Kitchens"

(Photographs: Arsineh Houspian)

Thank you to everyone who planned and worked on the events, and to everyone who participated. We look forward to seeing you DAW in September 2013!

s T O P P R E s s