INTHE QUARTERLY NEWSLETTER OF TOUCHALZHEIMER’S AUSTRALIA NSW AUTUMN 2015. ISSUE 92 ART AND DEMENTIA DEMENTIA-SPECIFIC GALLERY TOURS LAUNCHED ACROSS NSW POLICY UPDATE • EDUCATION • FUNDRAISING • NEWS +1 IN TOUCH AUTUMN 2015 InTouch_ALZ25_Autumn_2015_v4.indd 1 27/03/15 1:31 PM IN TOUCHX 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 AUTUMN 2015 IN TOUCH 3 InTouch_ALZ25_Autumn_2015_v4.indd 3 27/03/15 1:31 PM NEWS 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.