INTHE QUARTERLY NEWSLETTER OF TOUCHALZHEIMER’S AUSTRALIA NSW AUTUMN 2015. ISSUE 92 ART AND DEMENTIA-SPECIFIC GALLERY TOURS LAUNCHED ACROSS NSW

POLICY UPDATE • EDUCATION • FUNDRAISING • NEWS +1 IN TOUCH AUTUMN 2015

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The quarterly newsletter for members of Alzheimer’s Australia NSW CEO The Hon. John Watkins General Manager Services CONTENTS 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 AO Co-Director, Centre for Healthy Brain Ageing, UNSW Director, Dementia Collaborative Research Centre 6 Dr Helen Creasey Senior Staff Specialist, Geriatric 3 CHAIR’S 13 POLICY UPDATE Medicine, Deputy Director of CERA AND CEO’S Changes to aged care Assoc Prof Michael Valenzuela Group Leader, Brain & Mind Institute MESSAGES University of Sydney 14 CALENDAR 4 NEWS Dr Bryce Vissel Events for people with dementia, Senior Research Fellow, Group Leader, • Alzheimer’s Australia NSW’s carers and family members Neurodegenerative Disorders transport research Garvan Institute of Medical Research • Smoke alarm subsidies 15 ADVOCATES Editors Andrew Mills and Sarah Price • Online support resources Meet the people working to raise T: (02) 9805 0100 awareness of dementia in the • ADI Conference E: [email protected] community and media [email protected] Alzheimer’s Australia NSW 6 COVER STORY 16 EDUCATION PO Box 6042 Training for tour guides helps Courses for carers, health North Ryde NSW 2113 Australia galleries around NSW welcome (02) 9805 0100 T: people with dementia professionals and group leaders F: (02) 9805 1665 E: [email protected] W: www.fi ghtdementia.org.au 10 RESEARCH 17 Q&A Registered as a Print Post Publication • Drug enters phase-two trials Answers to questions asked of No. PP: 100008217 ISSN: 1038-7854 the National Dementia Helpline • Medications linked to dementia • The brain cells that may 18 FUNDRAISING Articles in this publication provide a general summary prevent dementia only of the subject matter covered. Any person with Community fundraiser Jacqui rolls dementia or a carer for a person with dementia should out the red carpet for Still Alice seek professional advice about their specifi c case. • Brain training AlzNSW is not liable for any error or omission in this publication. Permission should be sought from the • Height and dementia risk editor before reproducing articles. Once permission is given the source must be acknowledged. Products and 19 IN MEMORIAM services contained in paid advertisements or otherwise • Music lowers dementia risk featured in this publication are not necessarily endorsed by AlzNSW. AlzNSW does not endorse any products • Robots set to improve 20 RESOURCES or services of any description. The views expressed by contributors to this newsletter are not communication and language Reviews of library items necessarily shared by AlzNSW. • Patient and carer needs Cover image: Orange Regional Gallery is Published on behalf of Alzheimer’s research: call for participants running dementia-specific tours Australia NSW by Mahlab Media www.mahlabmedia.com.au 2 IN TOUCH AUTUMN 2015

InTouch_ALZ25_Autumn_2015_v4.indd 2 27/03/15 1:31 PM WELCOME

CHAIR’S MESSAGE BOARD CHANGES

After more than 10 CEO’S MESSAGE years of distinguished service on the OUR ELECTION Alzheimer’s MANIFESTO Australia NSW Board, John Morrison has stepped down as The latest dementia prevalence rates show Director. I asked John to reflect on some that the number of people with dementia of his greatest challenges and highlights across NSW is now estimated to be during this time. almost 112,000. We expect this number to A challenge for Alzheimer’s Australia increase to about 128,500 people by 2020 NSW when John joined the organisation and up to 272,000 people by 2050. These in 2003 was to introduce strong financial, figures are telling us that dementia is an commercial, legal and investment issue that is only going to continue to expertise. The Board decided to become increase, and we need a whole-of- an incorporated entity; achieving this, with government approach to appropriately tackle that challenge. David Scarlett, became John’s first official We prepared a pre-election manifesto and delivered it to the duty. John will continue to be involved major political parties before the NSW state election in March, with Alzheimer’s Australia NSW on the calling on them to commit to funding for the following initiatives: Audit & Risk and Investment committees. • A dementia centre in Western Sydney I am also delighted to announce • The creation of dementia-friendly communities across NSW the appointment of our newest Board • Implementation of initiatives to support improved hospital care Director, Dagmar Schmidmaier AM for people with dementia FALIA. Dagmar is Chair of the Aurora Foundation. After retiring as State DEMENTIA IS AN ISSUE THAT IS ONLY Librarian and CEO of the State Library of GOING TO CONTINUE TO INCREASE. NSW, Dagmar has taken responsibility WE NEED A WHOLE-OF-GOVERNMENT for the Chief Executive Women’s Talent “APPROACH TO APPROPRIATELY Development Programme. Dagmar has TACKLE THAT CHALLENGE. been involved with professional education throughout her career and is an accredited With the high level of dementia in Aboriginal communities, LSI practitioner. we need to look at suitable dementia care and risk reduction She is a Fellow and former president measures. We are calling for the major parties to commit to: of the Australia Library and Information • Continuing to fund a state-wide Aboriginal project officer to Association, a member of the Masters support Aboriginal communities and mainstream services in of Information Studies Course Advisory providing culturally-appropriate dementia care Committee at the University of Canberra, • Appropriately funding local Aboriginal liaison workers to Chair and non-Member Director of the provide risk reduction messages to the Aboriginal population Board of the War Widows’ Guild of Alzheimer’s Australia NSW will continue to advocate for a Australia NSW, member of Council of comprehensive state-wide dementia strategy across health, Chief Executive Women, and member of transport, policing, housing and other government services, and the Alzheimer’s Australia NSW Advisory the implementation of initiatives that will support improved care Committee. Dagmar is the recipient of the for people who are living with dementia. Order of Australia, the Centenary Medal, a This means taking a serious look at how to provide better Doctorate and the Alumni Award for Arts/ care for people with dementia in hospital, increasing specialist Law from UNSW. palliative care for people with dementia, and adequately funding We are blessed to have an abundance health-related transport to support people living with dementia to of talented and committed people, keen to access health and medical-related appointments. join Alzheimer’s Australia NSW and ready Dementia is an issue that cannot be ignored and will not go to make a difference to the lives of those away. It demands effective, comprehensive action by the NSW people living with dementia. This is a good Government, and Alzheimer’s Australia NSW will continue to ask position to be in. for that on your behalf.

Jerry Ellis AO The Hon. John Watkins Chair, Alzheimer’s Australia NSW CEO, Alzheimer’s Australia NSW

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MONTHS 3 OF SERVICE TRANSPORT NEEDS OF PEOPLE WITH DEMENTIA

80% of people with dementia living in the community need assistance with transport. NEW RESEARCH: MEETING THE TRANSPORT NEEDS OF PEOPLE WITH DEMENTIA The results of Alzheimer’s Australia NSW research into the transport needs of people with dementia is now available. The project found that there is a lack of focus on the mobility needs of people with dementia despite the fact that having access to suitable transport is vital to 50% of community transport maintaining a reasonable quality of life. operators report unmet Ageing, Disability and Home Care (ADHC) in the NSW Department of Family demand for transport from and Community Services provided funding to Alzheimer’s Australia NSW to people with dementia. undertake a literature review and fieldwork. Five surveys were conducted in NSW involving 96 people with dementia and carers, 51 service providers, 31 community transport operators, 55 local governments and 16 licensed clubs. In addition, nearly 100 interviews were conducted with stakeholders, people with dementia, carers and service providers, and six focus groups were run with Alzheimer’s Australia NSW Consumer Advisory Groups. Almost all participants agreed that meeting the transport needs of people with dementia is difficult. More than half of the community transport operators reported that there is an unmet demand for transport from this vulnerable group 49% of people with dementia of clients. Service providers rank transport as one of the three most important and carers did not know types of assistance they provide in helping people live in the community. The main areas where actions are required include: that the condition must • Training in dementia awareness and support for everyone involved in be reported to the RMS if providing transport for people with dementia the person with dementia • Information to enable people with dementia, carers and service providers wishes to continue driving. to ascertain what the transport options are • Escorts for people with dementia when needed • Information and resources to make it less traumatic to stop driving • Provision of appropriate transport so that people with dementia can meet all their needs, including their need for social interaction The consequences of not taking action are expensive. In particular, people with dementia are likely to move into residential care earlier as symptoms become more marked because their social and medical needs are not met in the community. 65% were not aware This research project has been completed and the full report is available on the that a driver with Alzheimer’s Australia NSW website (http://goo.gl/QLs6tq). A summary report dementia may only hold is also available on the website and in hard copy from Alzheimer’s Australia NSW. a conditional licence.

W: nsw.fightdementia.org.au SOURCES: AIHW AND ALZHEIMER’S AUSTRALIA NSW

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InTouch_ALZ25_Autumn_2015_v4.indd 4 27/03/15 1:31 PM ADI CONFERENCE 2015 IN MEMORIAM Alzheimer’s Australia NSW The 30th International Conference of • Younger Onset Dementia Key Worker would like to extend our Alzheimer’s Disease International will be Program team leaders Marie Gorman deepest sympathies to the held in Perth in April and has attracted a (Alzheimer’s Australia NSW) and family of Valerie Mann, who large field of talented international guest Connie Alomes (Alzheimer’s Australia passed away in June 2014. speakers and dementia care experts. Tasmania) will present on the Younger Valerie served as a member of Held in conjunction with Alzheimer’s Onset Dementia Key Worker Program. the Alzheimer’s Australia NSW Australia and Alzheimer’s Australia WA, Posters will also be presented with Board from 1996 to 2005, and Alzheimer’s Disease International’s Care, information about: is remembered as a champion Cure and the Dementia Experience – A • Antipsychotics and dementia: a de- volunteer and supporter. Global Challenge will attract about 1000 prescribing guide will be created and delegates from 60 countries. displayed by Alzheimer’s Australia International experts Martin Prince NSW Marketing and Communications from the UK and Harry Johns from the General Manager Andrew Mills. NEW RESOURCE USA, honorary Alzheimer’s Australia NSW • Risk factors for Alzheimer’s disease: Alzheimer’s Australia NSW, as medical adviser Professor Henry Broadaty, Lifestyle factors or a consequence part of the Illawarra Forum, has Alzheimer’s Australia consumers Edie of social determinants of health? by helped launch a new website to Mayhew and Anne Tudor will be there Policy, Research and Information make it easier for people to find along with a strong representation of General Manager Brendan Moore. and access social and support Alzheimer’s Australia NSW staff. • Respect + Increase capacity + Social services in the Illawarra region. Staff presentations include: emphasis = Acceptance CALD The Dementia Online Illawarra • Alzheimer’s Australia NSW educator Link Worker Brokerage Program: project responds to community and group worker Judy Bartholomew Alzheimer’s Australia NSW Partnership needs and builds on recent will present on Becoming A Dementia- Project by Counsellor / Group Facilitator consultative work by the Illawarra Friendly Community: The Port Nina Catalano. Forum through the Dementia Macquarie Experience. • Making the story matter: How Mapping Project. • Bega Mobile Respite team support dementia has become a legitimate W: dementiaillawarra.com worker Nola Hergenhan will issue in the media landscape by talk about working outside the Alzheimer’s Australia NSW Media ALARM SUBSIDIES box in Community Respite. General Manager Sarah Price • Senior research and policy officer Kylie • The Moving into Care Project: Will your smoke alarm wake Miskovski will give a presentation Leading change through successful you in the event of a fire? Are about Preventing Financial Abuse of collaborative partnerships by Senior you or someone you know deaf, People with Dementia. Project Manager Sally Lambourne. deafblind or hard of hearing • Education and sector development .To find out more or to register, visit and can’t wear hearing aids or manager Danielle White will talk about the conference website. cochlea implants at night? The Dementia and our Mob: Aboriginal W: alzint.org/2015 Deaf Society of NSW and Fire Community and Dementia Awareness. Perth, 15-18 April 2015 and Rescue NSW offer specialist smoke alarms that include a strobe light and pillow shaker. Their joint initiative, the Smoke Alarm Subsidy Scheme (SASS), BEING ACTIVE IS LIVING WELL lowers the cost of these specialist alarms from $500 to $20. Contact Dr Lee-Fay Low, Associate Professor of Ageing and Health at the Faculty the Deaf Society of NSW. of Health Sciences, University of Sydney and author of Living Well with T: (02) 8833 3600 Dementia shared her insights about Living Well with Dementia at the E: [email protected] Wollongong Art Gallery recently. W: deafsocietynsw.org.au “Being active is living well,” Dr Low said. “Engage the person with activity that’s meaningful and achievable based on their interests and abilities.” NEW STUDY Dr Low’s advice is to find an activity that works and create variety, focusing on what the person can do now. It can be great to find activities that family An international study aimed and friends can do with the person as a way of continuing those relationships. at improving the independence “If a person likes gardening but can’t do physical gardening any more, they of older Australians at home is can discuss a gardening magazine or visit a beautiful garden. calling for Sydney participants. “If they like rugby but can’t get to a game because they’re at night or it’s too Contact the Sydney Nursing crowded, go to a kids game during the day, watch it on television, sort rugby School at the University of Sydney cards into teams or look at old pictures.” to find out more. T: (02) 9114 4084 E: [email protected]

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PEOPLE LIVING WITH DEMENTIA CAN FIND AN OUTLET FOR CREATIVE EXPRESSION THROUGH ART, AND A NEW INITIATIVE IS SUPPORTING GALLERIES MEET THIS NEED.

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InTouch_ALZ25_Autumn_2015_v4.indd 6 27/03/15 1:32 PM he Alzheimer’s Australia NSW Guided Tours for People with Dementia program is a one-day dementia training session for guides and volunteers. It is designed to give them the confidence, skills and strategies in both verbal and non-verbal communication to conduct tours Tfor people living with dementia. The tours aim to provide intellectual stimulation in a safe and supportive environment to foster self-expression and further meaningful discussion and active engagement, while exploring the range of art works in the gallery and museum. The training is designed to be sustainable, as gallery staff and volunteers are equipped with knowledge and training resources that can be passed to new starters. The one-day dementia training is followed up with a demonstration tour to give staff and volunteers an opportunity to see the training in action. “To see the training in action solidifies everything they’ve learned in training,” says Denise Herman, Alzheimer’s Australia NSW Coordinator Social and Therapeutic Programs. Guided tours for people with dementia are designed to break down the barriers and stigma a person with dementia can experience with no distinction made and no emphasis placed on the person’s dementia. “For the person with dementia a tour is about being part of the group engaging with art,” Denise said. “The volunteers and people with dementia are part of that conversation. The facilitator is there to engage everybody about their thoughts and comments about art. It gives a person with dementia the opportunity to express their feelings and thoughts, and be heard.” The Guided Tours for People with Dementia program has been generously supported by the Nelson Meers Foundation. Galleries that elect to undertake the training are provided with a number of resources and Denise remains in regular contact to provide any further assistance staff or volunteers might require. ››

GUIDED TOURS FOR PEOPLE WITH DEMENTIA ARE DESIGNED TO BREAK DOWN THE BARRIERS “AND STIGMA A PERSON WITH DEMENTIA CAN EXPERIENCE WITH NO DISTINCTION MADE AND NO EMPHASIS PLACED ON THE PERSON’S DEMENTIA.

MORE INFO For more information about the Guided Tours for People with Dementia program or to take part please contact Denise Herman. T: (02) 9888 4207 E: [email protected]

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CASE STUDY

MOSMAN GALLERY’S GUIDES AND PARTICIPANTS

With an ageing when she attended a population in Mosman, demonstration art tour Mosman Gallery Public at the Mosman Gallery. Programs Officer Janelle The sight and aroma Patchett jumped at of colourful and delicate the opportunity to flowers adorned Fran’s train gallery staff and childhood home. The volunteers to be able to delightful blooms were offer tours for people freshly picked straight with dementia. from the garden that “There are a number of was lovingly tended aged care facilities in the by Fran’s father, who area, and they often have would proudly display IN THE GALLERY bookings for groups to the fruits of his labour come to the gallery,” inside the family home. Art tours for people living with dementia are now available Janelle said, pointing “We don’t have that in Dubbo, with guides at the Western Plains Cultural Centre out that as a number house anymore,” Fran (WPCC) trained to share their collection, exhibitions, events, of people joining the says, but the tour passion and knowledge of art and art history with people groups have dementia, offered Fran a unique who are living with dementia. the training is necessary. opportunity to reminisce WPCC Education Officer Lisa Minner said the tours have Understanding the about her father’s resonated with the community, and that photos of the first tour benefits of creative garden and share that posted on the gallery’s social media channels attracted a record- outlets in ageing experience with a small breaking number of likes and shares. and wanting more group of people with a A second group of visitors were taken through the gallery people who are living similar interest in art. more recently, and particularly loved exploring familiar items with dementia to For others, the tours in the 1950s classroom. be able to visit the are an opportunity “The visitors were very engaged and enthusiastic,” Lisa gallery, 18 Mosman to connect with said. “They really enjoyed the experience and loved sitting at Gallery volunteers people where the the old desks and looking at the text books. received training by focus is on art, rather “We plan on using the museum and classroom again Alzheimer’s Australia than dementia. during the tours as it was so well received.” NSW, including floor “I don’t know how The group will hold tours on the second Monday of volunteers to assist much they know, or each month. people with dementia to want to know (about • What: Art for those with Dementia Tours access the gallery and dementia),” said Ann, a • Where: Western Plains Cultural Centre foyer, move around. tour participant. “It was 76 Wingewarra Street, Dubbo. Volunteer guide nice to hear what other • When: Second Monday of each month. Anne said taking the people thought about • Contact: WPCC Education Officer Lisa Minner art tour for people the art.” T: (02) 6801 4441 with dementia was a For Ann, who has a E: [email protected] welcome shift from her passion for art, attending usual guiding role. the demonstration “It was really nice just tour gave her the NSW GALLERIES looking at a painting,” opportunity to hear OFFERING TOURS Anne said. “You’re the opinions of others always talking about a and think about the • Hazelhurst Regional Gallery (02) 8536 5700 painting as a guide.” pieces the group viewed • Orange Regional Gallery (02) 6393 8136 She also said the in a different way. • Wollongong Art Gallery (02) 4227 8506 experience was quite a “I found it very • Campbelltown Arts Centre (02) 4645 4298 learning curve. interesting,” Ann • Dubbo Regional Gallery (02) 6801 441 For visitors to the said. “There were lots • Tweed River Art Gallery (02) 66702712 gallery, the tours of pieces I haven’t • Mosman Art Gallery (02) 9978 4178 can evoke cherished seen before and • Hawkesbury Regional Gallery (02) 4560 4441 memories. This was perhaps some things • 19th Biennale of Sydney ran free Art and Dementia the case for Fran I won’t see again.” program for people living with dementia

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InTouch_ALZ25_Autumn_2015_v4.indd 8 27/03/15 1:32 PM SOCIALISING FOR BETTER BRAIN HEALTH

PROFESSOR HENRY BRODATY AND PROFESSOR PERMINDER SACHDEV, CO-DIRECTORS, CENTRE FOR HEALTHY BRAIN AGEING (CHeBA)

On the other hand, the dementia human research suggests that risk reduction associated with social network size could actually a larger social network or social contribute to changes both in brain engagement, which is shown by structure and function, providing some epidemiological studies, is fairly further support for causal links. large. The effect of increasing social For some, networking at cocktail engagement on delaying dementia parties is akin to living hell. But there disease progression could exceed that are many ways of connecting for better of current FDA-approved medications. mental health. The positive effects of social Meaningful engagement can be People who have more social contacts engagement on cognitive function through volunteering, joining an are less likely to develop dementia and have been demonstrated even at exercise group, joining a club or will generally be affected by Alzheimer’s the level of biomarkers. Recent playing bridge. These are especially disease about a decade later than their MRI studies found associations important messages in the 21st less-social peers. This could just be between the size and complexity century as more people live alone, reverse causality. The pathological brain of real-world social networks and particularly in later life. changes involved in Alzheimer’s disease the density of grey matter and Find out more about CHeBA at gradually build over the course of the 20 amygdala volume – both markers www.cheba.unsw.edu.au to 30 years before the disease becomes of healthier brains. Professor Brodaty is a Medical apparent, so it could be that social Even for those people who Advisor to Alzheimer’s withdrawal occurs in many people with develop Alzheimer’s disease, Australia NSW and Professor Alzheimer’s disease because of subtle larger social networks may modify Sachdev is a Medical Advisor brain changes prior to diagnosis. the level of symptoms. Non- to Alzheimer’s Australia.

HOW TO PLAN ENGAGING ACTIVITIES

Most people tend to think of activities for someone with dementia as something they have to think up to do with the person, but it doesn’t have to be so. They can simply be the everyday tasks we do from the moment we open our Engaging in activities can also reduce breakfast items, laundry to be folded. eyes in the morning, such as getting behaviour like walking about or agitation. When two routines can occur together, dressed, doing housework, playing cards, It can be helpful when finding activities the presence of one can help to bring even paying bills. for a person with dementia to think of the the other to mind. You can try combining “They can be active or passive, done three Rs: role, repetition and routine. the routines of taking tablets and eating alone or with others,” Alzheimer’s A role is something a person does breakfast or sweeping the path and Australia NSW educator Pam Davis regularly that contributes to their home preparing lunch. says. “Activities represent who we life. To identify the role, ask ‘what are are and what we are about.” some roles that the person used to do, or IDENTIFY SOME Activities are an opportunity to be still manages, but maybe only just?’ and ROLES THAT THE involved in everyday tasks, enjoy and think about how you could modify the role PERSON USED TO PLAY, create, spend quality time together, and to work with the person now. “AND THINK ABOUT HOW connect with the environment. The idea is that with repetition, the role YOU COULD MODIFY THE A person with dementia will eventually will become a routine, which you can do as ROLE TO WORK NOW. need a carer’s assistance to organise and often as necessary or as many times as you structure their day. Planned activities can can at regular intervals and at the best time enhance the person’s sense of dignity and of the day for the person with dementia. self-esteem by giving more purpose and Simple ways to make roles, routines MORE INFO meaning to his or her life. and activities easier for the person living For more information about Activities structure time. They can make with dementia are to make all the items education offered by Alzheimer’s the best of a person’s abilities, enhance needed accessible and visible, and to Australia NSW, see page 16. quality of life and facilitate relaxation. use labels, for example broom cupboard,

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InTouch_ALZ25_Autumn_2015_v4.indd 9 27/03/15 1:32 PM RESEARCH ALZHEIMER’S DRUG TRIALS A NEW PHASE TWO CLINICAL TRIAL LOOKING AT THE EFFICACY OF A DRUG CALLED ANAVEX 2-73 IS SET TO BEGIN AT THE ALFRED HOSPITAL IN VICTORIA.

HIGHER DOSES AND PROLONGED USE “OF PRESCRIPTION ANTICHOLINERGIC MEDICATIONS ARE LINKED TO DEMENTIA RISK IN OLDER PEOPLE.

Anavex 2-73 is designed to relieve the symptoms and slow COMMON PRESCRIPTION MEDICATIONS the progression of Alzheimer’s disease by blocking Tau and LINKED TO DEMENTIA amyloid-beta proteins, preventing the oxidative and cell Anticholinergic medications include hay fever tablets, death seen in the brains of people with Alzheimer’s disease. sleeping pills, asthma drugs and anti-depressants. They The phase two trial will assess 32 people with mild-to- block a neurotransmitter called acetylcholine, which is moderate Alzheimer’s disease, to determine the maximum involved in transmitting information between nerve cells. tolerated dose of the drug while assessing participants’ A common side effect is memory loss, which is resulting cognitive skill, blood results and brain scans. considered reversible on discontinuation of the medication. Associate Professor Stephen Macfarlane, Director of Aged However, a new US study published in JAMA Internal Psychiatry at The Alfred Hospital, is leading the Australian trial Medicine suggests that higher doses of prescription and said that Anavex 2-73 aims to protect the brain, helping anticholinergic medications, combined with prolonged use, nerve cells live longer and assisting with the removal of are linked to dementia risk in older people. amyloid plaque, which builds up in the brains of people with It is important to stress that the current results do not Alzheimer’s disease. suggest that these medications cause dementia, nor does “It’s really important to have a drug that can both relieve it suggest that a specific type of anticholinergic medication symptoms and slow the disease progression,” Macfarlane said. is linked to a higher risk. More research is required to “If you just slow down what would otherwise be a decline over answer these questions. seven to 10 years, people might survive for longer, but their If you are taking these medications and are concerned quality of life won’t be improved.” about their potential impacts on brain health and dementia The phase two trial is being fast-tracked and results could risk, speak to a doctor about alternatives, rather than ceasing be known within the year. If results are promising, a larger taking the medication. phase-three trial will involve thousands of participants across Source: JAMA Internal Medicine archinte.jamanetwork.com the country. Alzheimer’s Australia recommends consulting your health professional before taking part in clinical trials. Visit the Dementia Research Foundation research website For more information on dementia risk reduction for detailed information and questions to ask before strategies, visit the Your Brain Matters website. participating in a research trial. W: yourbrainmatters.org.au W: dementiaresearchfoundation.org.au

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InTouch_ALZ25_Autumn_2015_v4.indd 10 27/03/15 1:32 PM BRAIN CELLS MAY PREVENT DEMENTIA Researchers from Stanford University’s School of Medicine have found that fully functioning microglia can prevent neurodegeneration in mice. Microglia are supportive brain cells that constitute approximately 10 to 15 per cent of total brain cells and assist in maintaining normal brain function. When microglia lose their ability to function, amyloid beta proteins can build up in the brain, inducing toxic inflammation that may lead to Alzheimer’s disease. Degeneration of microglia is predominately due to a protein known as EP2. Blocking the action of EP2 restors the ability of microglia to reduce brain inflammation and clear the toxic markers that cause cell death, preventing cognitive decline in Alzheimer’s-afflicted mice. The Alzheimer’s Australia Dementia Research Foundation is currently funding a two-year research fellowship to explore the interaction of microglia and amyloid beta, particularly in relation to those who already have Alzheimer’s disease. Source: Journal of Clinical Investigation jci.org

BRAIN TRAINING MODERATELY EFFECTIVE A recent review of scientific literature by Australian researchers has found that computerised brain training is only modestly effective at improving cognitive performance in healthy adults. This finding was published in PLOS Medicine by Associate Professor Michael Valenzuela and his colleagues from the Brain and Mind Research Institute at the University of Sydney. The researchers are now planning additional research into WHILE BRAIN TRAINING CAN computerised brain-training, and Associate Professor Valenzuela IMPROVE MEMORY AND was awarded $700,000 to lead a clinical trial to determine SPEED, IT DOESN’T SEEM TO whether intensive computerised training can stop the progress “HAVE AN IMPACT ON ATTENTION of cognitive decline and the onset of dementia. OR EXECUTIVE FUNCTIONS SUCH Source: PLOS Medicine plosmedicine.org AS IMPULSE CONTROL, PLANNING AND PROBLEM SOLVING. HEIGHT AND DEMENTIA RISK Researchers recently analysed more than 180,000 British medical records from 1994 to 2008 across 18 different CALL FOR PARTICIPANTS – FALLS RESEARCH population cohort studies. When the researchers looked Researchers at Neuroscience Research Australia are specifically at the 1093 deaths attributed to dementia, they investigating whether a tailored exercise and hazard-reduction found that height was associated with a more favourable risk program can reduce the rate of falls in older people with factor profile in both men and women, but it’s likely the link is cognitive impairment or dementia living at home. Falls are the correlative, rather than causative. leading cause of injury-related hospitalisation for people aged “Short height in itself of course does not ‘cause’ dementia,” over 65, and people with dementia or impaired cognition have explains senior researcher on the study Dr David Batty. “Rather, twice the falls risk of the general population. There are no height captures a number of early life factors, including early-life proven strategies to prevent falls for people with dementia. illness, adversity, poor nutrition and psychosocial stress, and so The team of occupational therapy and physiotherapy allows us to examine the effect of these factors on dementia researchers, led by Professor Jacqui Close are looking for more closely.” people with dementia and their carers to be involved in the The researchers cited evidence from previous studies study, which goes for 12 months. The study is able to enrol showing that shorter stature is related to an increased risk people from the inner city, eastern, southern and northern of cardiovascular disease, which is also linked to dementia Sydney metropolitan areas, and is not limited by Local Health risk. They are now planning to assess the role of hormones, District boundaries. specifically IGF-1, in dementia risk. To find out more, contact Sandra O’Rourke Source: British Journal of Psychiatry bjp.rcpsych.org T: (02) 9399 1851

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InTouch_ALZ25_Autumn_2015_v4.indd 11 27/03/15 1:32 PM RESEARCH MUSIC LINKED TO DEMENTIA RISK REDUCTION A STUDY OF TWINS’ LIFESTYLES HAS SHOWN THAT PLAYING AND LEARNING A MUSICAL INSTRUMENT IN ADULTHOOD BENEFITS COGNITIVE ABILITIES.

New research suggests that playing a musical instrument EXERCISE DISCUSSION PAPER during adulthood is associated with reduced risk of While there is a growing body of evidence for exercise as a cognitive impairment and dementia. Researchers analysed dementia risk reduction strategy, little was known about the data from 157 sets of twins, with one in each pair having impact exercise could have on the progression of dementia, or been diagnosed with a form of dementia or a cognitive of the fl ow-on benefi ts for carers and service providers. impairment, allowing researchers to control for genetic and In a small qualitative study conducted by Alzheimer’s Australia environmental factors to determine risk factors unique to the NSW participants identifi ed a number of benefi ts, including twin with dementia, as well as protective factors exclusive to feeling stronger, improvements in coordination and balance, the healthy twin. and an improved general sense of wellbeing. Some reported Of the 157 sets of twins, 31 individuals identifi ed that they cognitive benefi ts including reducing the presentation and played musical instruments, and 27 of these were cognitively progression of dementia, and improvements to alertness and healthy while four had dementia. Analysis (controlling for communication. Emotional and social benefi ts were also noted. gender, education, and physical activity) found that participants Benefi ts to carers included respite opportunities and reductions who played an instrument in older adulthood had a 64 per cent in carer stress, while public policy benefi ts include avoiding, lower likelihood of developing a cognitive impairment. reducing or deferring the costs associated with hospitalisations, This result provides evidence that learning a new hobby higher levels of dependence and premature entry to aged care. (such as a musical instrument) may reduce dementia risk. Alzheimer’s Australia NSW has made a number of suggestions For more information about dementia risk reduction to help overcome barriers to exercise participation. strategies please visit www.yourbrainmatters.org.au Read the full discussion paper nsw.fi ghtdementia.org.au Source: International Journal of Alzheimer’s Disease hindawi.com/journals/ijad/ CALL FOR PARTICIPANTS A new study is exploring the impact of a diagnosis of dementia APP DEVELOPMENT – LEND A HAND on a person’s ability to ensure that their needs are met. The The Dementia Collaborative Research Centre-Assessment study recognises the importance of listening to people with and Better Care (DCRC-ABC) at UNSW is seeking dementia and will assist with future service planning. consultation with experienced carers to guide the Find out more from the Dementia Research Foundation. development of an App to support family carers in the W: dementiaresearchfoundation.org.au management of behaviour. Taking part would involve a brief group or individual discussion with Kim Burns and Ranmalie Jayasinha from STAY IN THE LOOP the DCRC team. For the latest in dementia research, visit the Consultation can be conducted at a time convenient to Dementia Research Foundation website and carers. Information gathered will not be linked to any individual. sign up to the Dementia News enewsletter. For more information, or to take part, contact Kim Burns. W: dementiaresearchfoundation.org.au E: [email protected]

SPECIALIST DEMENTIA EDUCATION FOR BUSINESS AND WORKPLACES

As the peak body for dementia, Alzheimer’s Australia provides nationally Contact the Alzheimer’s Australia NSW education Alzheimer’s Australia is at the forefront recognised dementia training to: team: [email protected] or phone of dementia knowledge and quality • Improve employee confidence, skills 8875 4640 or 8875 4651. care. and capacity to engage with people We design education and engagement with dementia THE NATIONAL DEMENTIA HELPLINE programs from foundation learning to • Make your organisation more specialist care that meet a variety of dementia-friendly service and educational outcomes. • Help your employees to lead a 1800 100 500 brain-healthy lifestyle The National Dementia Helpline is an Australian Government initiative We also offer consultancy services for Alzheimer’s Australia NSW ABN: 27 109 607 472 Photos: © Lynton Crabb Photography businesses that desire to be recognised Get in early, make dementia education as industry leaders. a top priority for your staff in 2014.

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InTouch_ALZ25_Autumn_2015_v4.indd 12 27/03/15 1:32 PM POLICY UPDATE AGED CARE CHANGES RECENT LARGE-SCALE CHANGES HAVE BEEN MADE TO BOTH RESIDENTIAL AND COMMUNITY AGED CARE, INCLUDING CLIENT CONTRIBUTION CHANGES.

BRENDAN MOORE, GENERAL MANAGER – POLICY, RESEARCH AND INFORMATION, ALZHEIMER’S AUSTRALIA NSW

INFORMATION, ACCESS a decision the aged care provider whether you need to make a AND ASSESSMENT makes. More information is available higher payment. The Australian My Aged Care commenced om the My Aged Care website. Government, not the aged care operating in July 2013 with a W: www.myagedcare.gov.au/ provider, regulates the costs. website and telephone contact financial-and-legal/aged-care- More information is available on centre. At this stage it is working homes-costs-explained the My Aged Care website. as a central source of information A dementia supplement in W: www.myagedcare.gov.au/help- for people to contact to find and residential aged care was a feature of home-costs-explained access the services they need. the aged care reforms, however, in Since 1 August 2013, all new W: www.myagedcare.gov.au June 2014 the Government stopped Home Care Packages must have T: 1800 200 422 this without warning. Alzheimer’s been delivered on a consumer- Access to residential and packaged Australia continues to advocate for directed care (CDC) basis. Packages care remains through Aged Care people with dementia in residential allocated prior to 1 August 2013 Assessment Teams.It is proposed aged care and for the reinstatement are not subject to this requirement that future developments of the of a program that achieves the until 1 July 2015, so you may find My Aged Care service will see it Government objectives of supporting variation until that date. CDC means manage screening, assessment, the individual residents who have that you should have greater choice, client records, service matching very high behaviour support needs. control and flexibility in the types of and electronic referrals. care and support you receive, who Access to the Home and COMMUNITY AND delivers it and when. Packages are Community Care Program and IN-HOME CARE still allocated to providers, not to National Respite for Carers Program Community Aged Care Packages and the client, so you can’t change who remains unchanged, and you Extended Aged Care in the Home manages your package easily. can self-refer or refer others to packages have been replaced by There are no changes to the Home organisations that provide these a four-level system of Home Care and Community Care Program, services. Again, the My Aged Packages – one being the lowest National Respite for Carers Program, Care service can help you locate level and four being the highest. Day Therapy Centres Program and these services in your area. Each of the four levels includes a Assistance with Care and Housing for The National Dementia Helpline supplement for dementia that equates the Aged Program until 1 July 2015. remains unchanged. You can contact to 10 per cent of the value of the the Helpline at any time; it isn’t Home Care Package. For example, just for emergencies or times of the Level 1 package subsidy paid GET IN TOUCH crisis. You can call for information to the aged care provider is $21.43 or queries you may have. per day, with an additional $2.14 per This article is the first in a day paid in the form of a Dementia series that will inform people RESIDENTIAL AGED CARE and Cognition Supplement. with dementia, their carers The distinction between low and New Home Care Package clients and families about changes high care in Residential Aged Care from 1 July 2014 are now subject to to aged care and dementia (formerly called hostel and nursing an income test to determine their services. To suggest topics for home) has been removed. individual fee. A basic daily fee of discussion in future editions, Bonds on low-care beds and 17.5 per cent of the single basic Age contact Brendan Moore. daily charges have been replaced Pension will remain in place as a E: brendan.moore@ by a combination of basic daily minimum contribution. alzheimers.org.au fees, a means-tested care fee The income test will determine and accommodation payments. Everyone’s circumstances will be different depending on their income NATIONAL DEMENTIA HELPLINE and assets and you may wish The National Dementia Helpline remains unchanged. You can contact the to access advice from a service Helpline at any time, and it isn’t just for emergencies or times of crises. that specialises in this area. The T: 1800 100 500 Australian Government regulates the E: [email protected] costs you may have to pay; it is not

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InTouch_ALZ25_Autumn_2015_v4.indd 13 27/03/15 1:32 PM CALENDAR COMMUNITY EVENTS OPPORTUNITIES FOR PEOPLE WITH DEMENTIA, THEIR CARERS AND FAMILIES TO SOCIALISE, BUILD SUPPORT NETWORKS AND LEARN.

FORSTER YOUNGER Crookwell and District CAFÉ CONNECT ‘SPOTLIGHT ON ONSET DEMENTIA 15 April, 13 May, 10 June: Coffs Harbour DEMENTIA’ ACTIVITY AND 10.30am – 12pm 15 April, 20 May, 17 June ONE-DAY FORUM SUPPORT GROUP Bundanoon Marg Coutts (02) 6651 7101 Ryde Eastwood Leagues Club 28 May 13 April Krambach Pub, 11am 2 April, 7 May, 4 June: Maitland (Maitland Park 10.30am – 12pm Lynn Silverstone 11 May Bowling Club Bistro) Rainforest Walk to beach: Bowral 16 April, 21 May, 18 June: T: (02) 9998 2915 10am, Lunch at The Bunker, 16 April, 21 May, 18 June: 11am – 12.30pm E: [email protected] Tallwoods Golf Club: 12pm 10.30am – 12pm (02) 4962 7000 Jane Bushell (02) 4869 5651 RUNNING EVENTS 1 June Manning Regional Art Nelson Bay (Little Nel Cafe New Run: 18-19 April Gallery, 10am; Sailo’s Taree Port Macquarie at The Nelson Resort) Aquatic Club, 12pm 23 April, 28 May, 25 June 9 April, 14 May, 11 June: Sydney Morning Herald half 17 May Ellen Brown 0407 049 178 9.30 – 11am marathon: Port Macquarie dinner group Sydney Harbour 5 and 14 April, 9 June (02) 4962 7000 COFFEE AND CHAT 10km: 12 July Laurieton Toronto (Toronto Workers Bermagui (Saltwater Café) City2Surf: 9 August 24 April, 22 May, 26 June Club) 23 April, 28 May, 7 April, 5 May, 2 June: Blackmores Sydney Running 25 June: 10am – 12pm 10am – 11.30am Laurieton lunch group Festival: 20 September 9 April, 11 June, 13 August (02) 4962 7000 Color Run Wollongong: Merimbula (Dolphin Room, Kath Storey (02) 6584 7444 24 May Club Sapphire) 14 April, 12 Warners Bay May, 9 June:10am – 12pm (Warners at the Bay) Color Run Newcastle: 1 April, 6 May, 3 June: 28 June Di Gallard (02) 6492 6158 YOUNGER ONSET DEMENTIA GROUPS 10 – 11.30am Lucie Barney Cooma (Werri-Nina Centre) Younger Onset Dementia (02) 4962 7000 T: 02 8875 4625 28 April, 26 May, 23 June: cafe: Newcastle Cruising E: lucie.barney@ 10:30am – 12:30pm Raymond Terrace Yacht Club (Cravings Café) alzheimers.org.au Bredbo (Snowy Mountains 1 April, 6 May, 3 June 23 April, 28 May, 25 June Gourmet Food) 14 April, 6 – 7.30pm 10am – 11.30am ACTIVITIES 9 June: 10am – 12pm Clare or Deb (02) 4962 7000 Miriam Low (02) 4962 7000 WORKSHOPS Art and music: Jindabyne (Parc Café, Milton Younger Onset St George (Cafe Brasserie Liverpool: 21 April National Parks Building) Dementia support group: Beverley Park Golf Club) 1 April, 3 June: 10am – 12pm Yatte Yattah nursery 21 April, 19 May, 16 June: Mount Druitt: 20 May Verity Jackson (02) 6452 3961 22 April, 27 May, 24 June: 10am 10 – 11:30am Technology and Sandra Kay (02) 8875 4694 Batemans Bay (Batemans Sutherland Shire reminiscence Bay Community Centre) Fairy Meadow Younger (Camelia Gardens Tea House) Narellan: 17 June 1 April, 6 May, 3 June: Onset Dementia support 28 April, 26 May, 23 June Nepean: 21 July 10.30am – 12pm group 7 May, 2 July: 10am 9:30 – 11am Nina Catalano Gaye Finch (02) 4474 3843 Kate Troy (02) 4220 8706 Julie Sinnis (02) 9531 1928 T: (02) 8875 4645

The Alzheimer’s Australia NSW Memory Van raises awareness of the importance of brain health, and provides information on dementia, for people living with dementia MEMORY VAN and their families, service providers and the community.

THE VAN ALSO VISITED: GUNNING Harden Murrumbateman Queanbeyan Braidwood Bungendore Yass KYOGLE Boorowa Young Lavington WEST WYALONG Albury Bankstown CASINO COOTAMUNDRA COOGEE FORSTER TEMORA CLOVELLY GRENFELL

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InTouch_ALZ25_Autumn_2015_v4.indd 14 27/03/15 1:32 PM DEMENTIA ADVOCATES SPREADING THE WORD ALZHEIMER’S AUSTRALIA NSW DEMENTIA ADVOCATES WORK TO RAISE AWARENESS ABOUT DEMENTIA IN THE COMMUNITY AND MEDIA.

Q&A HELEN IMELDA JAMES GILMORE

Why did you become Q a dementia advocate? When my husband Gordon was Imelda Gilmore (right) is a Dementia projects. It doesn’t take long to diagnosed with frontotemporal Advocate for Alzheimer’s Australia complete surveys and our contribution dementia, I knew nothing about NSW, and is married to Graham (left), is essential to the validity of the data. this cruel and debilitating disease. who lives with younger onset dementia. I look for opportunities to support I learned there was no cure. Graham and I began the Living with initiatives to lobby government. I then wondered how we Memory Loss program in May 2012, I’ve been able to sit on a Consumer could turn a negative situation and it wasn’t long before I became Advisory Group, and it’s been affirming into a positive one and decided aware that Graham and I have a story and encouraging to see that I do have a the best way was to share our to tell. Not only that, the story needs voice and people are listening. story to increase the awareness to be heard by carers, government and I’ve been able to contribute by of dementia among friends, service providers, and a community speaking at workshops, forums and family and the community to that stigmatises and hides dementia. other Alzheimer’s Australia NSW remove the stigma and mystery We heard that there could be media events. Equally importantly, I talk to surrounding this disease. organisations looking to speak to anyone who will listen about the reality couples like us and agreed to do this. of the disease, rather than the myths. What one thing is As the next year passed, there Graham and I see ourselves as Q important for carers were media interviews and Graham very ordinary people and at first I to hear? and I began talking more openly to was surprised that anyone would It’s important to encourage and friends. We were even more open with be interested in our story. However, empower carers of loved ones medical professionals about what we I’ve felt validated and listened to, with dementia so that they gain were experiencing, where we were and I believe we’ve made a positive knowledge and support to assist being let down and where changes contribution to the community. them on this really rough journey could make a difference to how well I Whoever you are, whatever your we are all on. could care for Graham. experience is, don’t be afraid to share It’s all about living one day at When Graham’s illness began to pick your story and join the fight; we can a time and ensuring we focus up momentum he moved to residential contribute to providing a better world on what we can do, rather than care, where he has now been for 16 for those whose world is slipping away. what we can’t do. months. As I gradually handed over It’s rewarding and it helps us to the larger portion of my caring role, I feel less isolated. Most importantly, What would you say had more time available. It remains my every story adds to the knowledge Q to someone who was desire to honour the man I love and base that will help our communities to considering becoming a continue with our agreed intention of become dementia-friendly, and every Dementia Advocate? telling our story. story makes a vital contribution to the We all need to recognise that we I enjoy taking part in fundraisers research that will one day provide the are not alone in this. We need to and I keep my eye out for research key to unlock the door to the cure. share our stories to help others in similar situations.

If you would like to be a Dementia Advocate please contact Jo-Ann Brown or visit BECOME AN the Fight Dementia website. T: (02) 9875 4636 | E: [email protected] ADVOCATE W: nsw.fightdementia.org.au/nsw/support-us/dementia-advocates-program

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InTouch_ALZ25_Autumn_2015_v4.indd 15 27/03/15 1:32 PM EDUCATION ALZHEIMER’S AUSTRALIA NSW COURSES THE ALZHEIMER’S AUSTRALIA NSW EDUCATION PROGRAM OFFERS COURSES FOR CARE WORKERS, FAMILY CARERS AND VOLUNTEERS. CARE WORKER COURSES FAMILY CARER EDUCATION SUPPORT GROUP – FEES APPLY One Day Carer Education LEADERS’ WORKSHOPS Experiencing Dementia & Challenging Holbrook 28 April Introduction to Group Perceptions of Behaviour Associated Work Leadership Henty 29 April with Dementia Albury 18-19 May Corowa 30 April North Ryde 25 Jun Kiama 25-26 May Newcastle 12 May, 11 Aug, Macksville 30 Jun 27 Oct, 10 Nov North Ryde 20-21 Jul Challenging Perceptions of Behaviour Albury 27 Apr Advanced Group Leadership Associated with Dementia Tea Gardens 10 Jun North Ryde 21 Apr Tamworth 22 Apr Forster 20 Aug Queanbeyan 1 Jun Ballina 21 May Two Day Carer Education Newcastle 23 Jun Understanding Dementia Dapto 12, 19 May Albury 27 Oct Forster 26 May Family and Friends Loss & Grief in a Carer Support Group Communicating with a Person with North Ryde 29 Apr, 20 Aug North Ryde 4-5 May, 7-8 Oct Dementia Newcastle 24-25 Nov Tamworth 22 Apr Four-evening Carer Education North Ryde 12, 19, 26 May, 2 Jun Group Leaders’ Forum (for current, A Positive Approach to Understanding experienced group leaders) Sylvania 15, 22, 29 Jun, 6 Jul; Dementia, Effective Communication 12, 19, 26 Oct, 2 Nov Carer Coaching and Behaviour Changes Port Macquarie 27 Apr Newcastle 22 Jul Emotional Impact and Stress Nowra 16 Jun Management Meaningful Engagement in Moruya 21 April Working with Guilt Leisure Activities Newcastle 4 Aug North Ryde 22 Apr Effective Communication and Responding to Changed Behaviour Port Macquarie 25 Aug Discover the Person, Not the Disease Batemans Bay 22 April North Ryde 8 Sept and Communicating with a Person Interacting with a person Queanbeyan 9 Nov Living with Dementia with dementia Newcastle 29 Apr Facilitating Aboriginal and Torres Newcastle 12 Aug Strait Islander Yarning Circles North Ryde 20 May North Ryde 6 May, 15 July, 15 Oct Armidale 8 Apr Working with Families North Ryde 24 Mar For more information or to register For information contact Leanne and Dementia please contact: Norman. T: (02) 8875 4682 T: (02) 8875 4640 E: groupdevelopmentnsw@ Batemans Bay 23 April E: [email protected] alzheimers.org.au

DEMENTIA NEWS UNRAVEL THE SCIENCE BEHIND DEMENTIA RESEARCH

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

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InTouch_ALZ25_Autumn_2015_v4.indd 16 27/03/15 1:32 PM SERVICES

YOU ASKED, Q&A WE ANSWER

CALLERS TO THE NATIONAL DEMENTIA HELPLINE ASK ABOUT LEGAL, HEALTH, FINANCIAL AND SOCIAL ASPECTS OF LIVING WITH DEMENTIA.

Can physical exercise reduce MY MUM GETS VERY CONFUSED AND Q the risk of developing Q RESTLESS IN THE LATE AFTERNOONS. dementia? Can physical exercise WHY DOES THIS HAPPEN AND WHAT CAN I DO? help people with dementia? Physical exercise is an important part This may be what is called ‘’. It is not clear what the of any healthy lifestyle, contributing causes are, but it is possibly the result of changes occurring in to general fi tness, muscle control and the brain or it could be that people with dementia tire more easily. coordination, and to a general sense Check with your doctor to exclude certain causes and then talk with of wellbeing. one of our National Dementia Helpline counsellors. They may be Physical exercise is also essential for maintaining adequate blood fl ow to able to suggest ideas for what may help to relax your mum or make the brain and may stimulate brain cell her feel more secure. growth and survival. Exercise is therefore one of the factors that researchers are I’m really struggling to occupy Lately my mother has been considering for its role in reducing the Q my husband now he has Q telling my children stories risk of developing dementia and for dementia. Do you have any ideas about our family, but some are not the benefi ts it offers to people with about any activities he can do? true. When I try to correct her she dementia. Of course, you should always Encouraging your husband to have gets agitated and upset. Why? consult your doctor before starting any responsibilities in the household can Your mother may have forgotten some exercise program, particularly where help to make him feel useful. Simple of the details of the story and, rather there are other illnesses or disabilities skills such as sweeping the drive, than try to bring her back to our reality, to consider. buttering bread, folding the washing, you could try validating what she says. watering the garden or raking the grass This can result in a much more positive can help to ensure that this happens. experience. You can develop empathy If you have questions Call the National Dementia Helpline with your mum, and build trust and a about dementia, contact the and one of our telephone counsellors sense of security, which can reduce her Alzheimer’s Australia National can address your specifi c need. They anxiety and agitation. Dementia Helpline counsellors. will explore your husband’s interests and While validation involves lying to the T: 1800 100 500 be able to suggest activities, books and person with dementia, it also avoids E: nsw.helpline@alzheimers. websites that will give you ideas about challenging his or her reality, which can org.au what may help. create further confusion.

30th International Conference of Alzheimer’s Disease International Care, Cure and the Dementia Experience - A Global Challenge Register Now 15 - 18 April 2015, Perth, Australia

www.alzint.org/2015 Proudly Hosted By

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InTouch_ALZ25_Autumn_2015_v4.indd 17 27/03/15 1:32 PM FUNDRAISING ROLLING OUT THE RED CARPET THE RECENT FILM STILL ALICE DREW PAINFUL PARALLELS WITH COMMUNITY FUNDRAISER JACQUI’S EXPERIENCE. JACQUI WAS COMPELLED TO ACT, ORGANISING A MOVIE FUNDRAISER FOR ALZHEIMER’S AUSTRALIA NSW.

In August 2013, Jacqui’s father Nigel Robert Louez passed away from Alzheimer’s disease. “It was a long and intense journey, and one that my mum and I would not have navigated if not for the support and guidance from organisations like Alzheimer’s Australia NSW,” Jacqui says. Jacqui and her mother wanted to raise money for Alzheimer’s Australia NSW, and an opportunity presented itself when the remarkable film Still Alice was released. “The film is a touching account of somebody diagnosed with Alzheimer’s disease. I’m fortunate to have old colleagues in the film world who have been incredibly helpful on account of knowing how much the cause means to me, and who Jacqui (centre) raised more than $5000 for Alzheimer’s Australia demonstrated incredible support to make a private screening NSW, with a little help from some high-profile friends. possible,” Jacqui says. “My dear friend who is more like a surrogate sister, actress Kate Bosworth, stars in the film and took “I’ve been amazed at how generous people can be when you the role partly due to what we all experienced with dad, whom are raising money for such a good cause, and a personal one at she loved very much. I saw the film for the first time on the night that,” she says. “I hoped the fundraising would be successful and, as the film has added meaning for our family, it was an and we would raise as much money as possible for Alzheimer’s especially emotional evening.” Australia NSW. The screening was held in honour of my dad The lead-up to the event was a busy time, with Jacqui selling but the money raised is for the benefit of everyone living the 200 tickets among friends and family. Event Cinemas donated Alzheimer’s journey. Our hearts are with you.” sparkling wine for guests, and Kate Bosworth organised a poster Alzheimer’s Australia NSW thanks Jacqui and everyone signed by the cast, which was auctioned on the night. involved for their amazing efforts in raising more than $5000. If you would like to fundraise for Alzheimer’s Australia NSW, contact Lucie Barney. T: (02) 8875 4625 E: [email protected]

JOIN THE FIGHT Empowers There are many ways to fight dementia: • Hold an event through our community older adults fundraising program and people • Become a regular giver as a Dementia Fighter with a disability • Donate through your workplace to remain • Request donations in lieu of gifts for celebrations independent • Leave a bequest • Volunteer and stay To find out more, contact Alzheimer’s Australia NSW. connected T: 1300 636 679 E: [email protected]

BEQUESTS To meet the growing demand for services, please consider leaving a gift in your will. Helping in this very special way will allow Alzheimer’s Australia NSW to continue to provide the vital support, education services and research to people with dementia, carers and families. Anyone considering this should also consult a solicitor or a Trustee Company. For a confidential discussion, please contact Alzheimer’s Australia NSW Bequest Executive Karen Carran. To find out more visit mylively.com.au T: (02) 8875 4639 E: [email protected]

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InTouch_ALZ25_Autumn_2015_v4.indd 18 27/03/15 1:32 PM 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 ALZHEIMER’S AUSTRALIA NSW.

A Thelma Rose Gibson (Nee Croxon) Adrienne Parkee Anna Arciero June Laurel Godwin June Audrey Parkes George Arthur Austin Theodora Valetta Green Beverley Elaine Parkes Dorothy Baber (Nee Fiddes) Mavis Greenhalgh Marie Therese Paul (Nee Denlay) Pamela Pearson B H Margaret Phillips Rae Winifred Backus Bin Siang Han Elena Pittiglio Solomon Matthew Bard Jessie Heathcote Ross Plews Silvana Bianco Mervyn Holland Harry Plumridge Hilda Bloxham Jean May Money Hollis Ernie Preston Monica Margaret Bowen Peggy Hughes Gloria Wanda Boyce-Monaghan Robert Humphris R Robert Bradbury Nandor Huszar Colleen Anna Redshaw Clyde John Thomas Bruce Patricia Rees Carmine Bucciarelli I / J Jessie Reid Byrne Maximo Arnaldo Buch Anatoli (Anna) Iordanidis Vincenzo Risso Margaret Burns John Johnson Patricia Roberts Richard Henry Robert Butcher Gwenellen Ryder K C Maria Karipis S Thomas Noel Cappie-Wood Mary Vera King Konstantinos Serassis Sara Carchidi Kenneth Knock Con Skouras Dulcie May Catterall Maria Kyriacou Jackie Standford Zena Mary Charlton Connie Stylianidis Doreen Charnock L Pam Sunnucks Kenneth Chilvers Wesley John Laws Frank Sutherland Maria Coelho George Lees Doreen Coles Jean Lennane T Roddam John Cooper Luitgard Lievert Mavis Lillian Taber (Nee Naylor) Laurence Counsel Theodore Liras Guiseppina Tortora AJ (Tony) Cram Graham Lock Antonio Lofaro U D Reginald Lokhee Ronald William Upton Maisie Daines Noel Long Ronald Charles Day Kathleen Unitt Lowien V Evelyn Diamond Leonarda Vasta James Dixon M Giuseppe Viola Rae Doenau Lois Grahame Mackay-Sim Iris Doyle Betty Mahe W Giuseppe Maiolo Barbara Joan Wallace E Caterina Rose Maniscalco Sarah Joan Westren Ruth Merle Edwards Francis Marshall Phyllis Norma Wheatley John Evgenikos Janice Martin Margery Patricia Whitbourn Janice McGaghey Jimmy White F Angela Melacrinis William Joseph White Shirley Ann Fawcett Klaus Mohr Robert Henry Wood Sergei Nikolaevich Feodosiu Albert Moxon Patricia Fiander John Sylvester Fitzpatrick N David Fortune Joan Newton Alzheimer’s Australia NSW Margaret Foster would like to acknowledge Jan Fredericks O and thank the families and Gwen O’Sullivan executors of the recently G received bequests from Elsie May Galvin P which people with dementia, Helen Mary Garner Euripides Panayiotou carers and their families have Flo Gauci Agathe Papadopoulos received lasting benefit. Rosalia Gennusa Andreas Papoui

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InTouch_ALZ25_Autumn_2015_v4.indd 19 27/03/15 1:32 PM REVIEWS

LIBRARY RESOURCES THE ALZHEIMER’S AUSTRALIA NSW LIBRARY OFFERS FREE LOANS OF BOOKS, DVDS AND OTHER RESOURCES TO MEMBERS THROUGHOUT THE STATE. HERE ARE REVIEWS OF SOME OF THE ITEMS AVAILABLE AT THE MOMENT.

BOOKS it is okay to lie to the person with book for a student studying aged care or The hen that laid the golden dementia, how to present activities, leisure and lifestyle. omelette: a guide to art classes communicating more effectively, Reviewed by Alzheimer’s Australia NSW for people with dementia – the how to maintain friendships and diversional therapist Lauretta Kaldor. experiences and learning of connections, and how to involve two volunteers over 10 years family and friends. Strengthen your mind: activities for Barbara Davison and Barbara Potter Useful case studies offer people with early memory loss Even when the memory and senses examples of interactions between Kristen Einberger and Janelle Sellick fail, people with dementia may a person with dementia and their If you are running out of ideas for experience the joy of creativity carer, and provide positive ways quizzes for your groups, this book through watercolour painting. This to respond in similar situations. will give you ideas and topics to try. is the liberating message of Barbara This book is based on research The quizzes are aimed at providing Davison and Barbara Potter’s inspiring and scientific evidence, as well as stimulation of long-term memory using Sefton Art Project. Dr Low’s many years of experience prompts of the different senses. In The Hen that Laid the Golden working with people with dementia The approach is light-hearted and Omelette, they outline the philosophy and their carers. promotes fun and socialisation. This and techniques that evolved during Reviewed by Alzheimer’s Australia NSW book would also be a valuable tool for their 10 years of assisting people educator Pam Davis. people with early memory loss. with dementia to express themselves in watercolour. Activities for older people in care Illustrated with the exuberant homes: a handbook for successful and moving images of the artists activity planning LOANING ITEMS themselves, this book challenges the Sarah Crockett These items and many more assumption that people with dementia This activities book is useful and very are available to members of can no longer live productive lives and readable, as the author draws on Alzheimer’s Australia NSW, offers practical advice to those who may her own experiences as leisure staff and can be picked up from follow in their path. in residential and community aged and returned to local resource care. The book is written for the UK centres and offices. Resources Live and laugh with dementia: environment but easily adapts to our can also be posted to you if the essential guide to maximising own. I would recommend this book to you are unable to get to one of quality of life people starting out in this profession our library sites. Find a list of Dr Lee-Fay Low and doing creative activities with offices and resource centres An easy-to-read book that highlights the clients in aged care. It has chapters on the Alzheimer’s Australia importance of all of us remaining involved on planning, art and craft, and NSW website, and contact the in physical and mental activities to keep cooking, as well as extensive library to borrow items. our brains healthy and fit as we age. discussions of appropriate exercise, W: nsw.fightdementia.org.au/ It outlines the many different ways outings, spirituality, theme days and nsw/about-us/contact-us the brain functions and shows how sensory activities. E: nsw.library@alzheimers. dementia may affect these abilities. The reference section is a useful org.au Dr Low provides practical strategies guide to other books on activities T: (02) 9888 4218 and tips on topics such as whether and dementia. This would be a great

REVIEW We’d love to hear what you think of the library resources. Submit a review, and we’ll choose a few for publication in each issue. Post or email your reviews to Sonia Byrnes, AN including your full name and suburb. E: [email protected] P: Sonia Byrnes, ITEM PO Box 6042, North Ryde NSW 2113

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