June Judy Woolstencroft (Vice Chair) Desley O Brien

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1 June 2014 Judy Woolstencroft (Vice Chair) Judy's partner, Chris was diagnosed in 2007 with Alzheimer s Disease at age 56. She contacted Alzheimer s Australia ACT who provided incredible support to both. Judy and Chris joined the ACT Consumer Group the following year and she also became active in their support groups. In 2010 she became a member of The National Consumer Advisory Committee and is currently their deputy chair. She is also chair of Alzheimer s Australia ACT's Fundraising Committee a role which keeps her very busy. Judy has also been a past member of the Younger Onset Dementia network and together with Chris has been a strong advocate for people with dementia (particularly those with younger onset dementia) and their carers. Judy has attended and contributed to many forums and campaigns that are relevant to people with dementia, including driving and dementia, end of life care and has also provided input to a national framework for dementia. Judy formerly worked at the Australian Bureau of Statistics leaving in 2010 when Chris could no longer be at home alone. Desley O Brien Desley is a retired primary teacher and public servant who lives in Townsville. She returned to Townsville in 2003 to care for her father who had Alzheimer s disease. He passed away in Desley was an inaugural member of Alzheimer s Australia North Qld which is a volunteer group set up in 2003 to provide information and support to the local community. She continues to be an active member of this group as treasurer and maintaining contact with people with dementia, their families and local networks who work in the dementia area. Desley is a member of Alzheimer s Australia (Qld) Board and has represented North Qld on the National Consumer Advisory Committee for 4 years. 1

2 Marianne Gevers Marianne Gevers cared for her mother who developed dementia in her later years, and passed away in She has worked as a Registered Nurse in a range of positions and localities throughout Queensland. Marianne attended the first Alzheimer's Australia Consumer's summit in 2005, and was one of the original members of the National Consumers Advisory Committee. She joined the Management Committee of Alzheimer's Australia Gold Coast Inc. in 1999, and is a past President of the organisation. She has also been a member of the board of Alzheimer's Australia Queensland Ltd. since 2002, and is a past president of that body. She also served for six years as the Queensland representative on the National board of Alzheimer's Australia. Lucille Bloch (Chair) Lucille cared for her Mother in Israel after she was diagnosed with Alzheimer s disease at age 81 and she passed away 3 years later. Lucille noticed changes in her husband when they were emigrating to Australia. However, it took 3 years for him to get the confirmed diagnosis of fronto-temporal dementia at the age of 68. Lucille cared for him until he passed away at home 5 years later. Her husband donated his brain for research and Lucille too, is a registered brain donor. Lucille has been an active participant of the National Consumer Advisory Committee since its inception following the 2005 Consumer Summit and presently chairs the Committee. Lucille takes a monthly Carers Support Group for Alzheimer s Australia NSW and serves as a Director on the Board of Alzheimer s Australia NSW. Lucille is also a member on the Management Committee of Health Consumers New South Wales, the Neuroscience Research Australia Foundation s Advisory Council, is an active member of the Agency for Clinical Innovation (with a particular interest in the Palliative Care Network) and she participates in the National Carers Strategy Implementation Reference Group. 2

3 Merv Gillies Merv is a retired police officer having spent 37 years with the NSW Police Force. He relocated from Sydney and currently operates a small beef cattle farm on the mid-north coast of NSW where he cared for his mother and father who both suffered with Alzheimer's dementia and were diagnosed a month apart. He has addressed the NSW Parliamentary Friends of Dementia on the difficulties of caring and obtaining services for people living in a rural location. Merv is a member of several consumer groups within his area of rural NSW and has been a member of the NCAC for five years. Kathleen Short Ron Sinclair Ron cared for his wife who had familial early onset dementia and passed away in Ron has been on the Carers Advisory and Advocacy Committee and the Board of Management for Alzheimer s Australia South Australia for 10 years and was inaugural chairperson for Alzheimer s Australia s National Consumer Advisory Committee and Consumer Dementia Research Network. He is also a member of the National Cross Cultural Dementia Network. Ron is a pest animal research scientist in the South Australian state government and works primarily on biological controls of the introduced rabbit. 3

4 Kate Swaffer Kate Swaffer commenced her professional career as a nurse, specialising in dementia and aged care, and then operating theatres. She has also worked as a chef and as an executive in health care, retiring due to the diagnosis of a younger onset dementia when she was 49. Post diagnosis she completed a BA and BPsych and is still studying. She has written many published articles and a poetry book and given numerous media interviews about living with dementia, and submitted a private submission to the Inquiry into Dementia. She has presented nationally and internationally about dementia, and spoke at the inaugural Fight Dementia campaign rally in Canberra in 2011.Domiciliary Care SA has produced a staff training DVD featuring her story. She is an active member of the community advocating to break down the barriers and stigma of dementia. Kate is also patron to the Urban Myth Drama Group and ECH play The Visitors, a theatre production in 2013 about younger onset dementia. She is also the first elected Chair of the Alzheimer s Australia Dementia Advisory Group, set up in Kate s website and blog Creating Life With Words is at No members at present. Anne Fairhall Anne cared for her husband at home until his younger onset Frontal Temporal Dementia required Residential Care. She still actively shares in his care. Anne held National Executive positions in large organisations, founded her own Management Consulting business and has been involved as a Director on many Statutory Boards & Government Advisory Committees. Her career commenced as a Registered Nurse in Operating Theatre Management, before moving into corporate HR/Occupational Health & Safety Management. She is an active member of the Alzheimer s Australia Vic Consumer Advisory Committee, the Victorian Department of Health & Ageing Quality in Public Sector Residential Aged Care - Reference Group & recently appointed as Victorian representative to the National Consumer Advisory Committee of Alzheimer s Australia. She is a regular guest speaker, promoting greater understanding about the different forms of Dementia including the Behavioural, Psychological & Communication changes that occur with the development & diagnosis of Dementia. She has held a Consumer Directed Care Package & has been involved in many Alzheimer s Australia Vic projects including Driving & Dementia & Dementia Friendly Communities. 4

5 Glenda Parkin Education has been my career, though since my diagnosis in 2010, I can barely read, spell or add numbers! I have taught in secondary schools both public and private, developed State-wide school curricula, written school text books, lectured in teacher education at universities, been a deputy principal, and principal of two private schools one, the largest independent co-educational school in Western Australia for 6 years; and the other, a girls boarding school for 2 ½ years until my premature retirement. I have a BA Hons, Diploma of Education, and a PhD. I was diagnosed with younger onset Posterior Cortical Atrophy (PCA) or Benson s Disease, which has been described as the visual variant of Alzheimer s Disease. I am married to my husband, Bronte, and we have two sons in their early twenties who still live at home one a self employed music producer and the other, a photography student. When my neurologist suggested if there were still places in the world that I wanted to see before I lost my capacity for visual recognition, we set out to do as much travelling as time and finances permit. Between trips we have presented our journey with dementia to various groups including in rural towns, spoken at several conferences and meetings, and in 2014 will be aiming to expand on this role in conjunction with Alzheimer s WA. Because I was born and raised on a wheat and sheep property in Western Australia, I have a special empathy with the needs of people in rural and remote areas who have dementia. Apart from a new passion for listening to talking books, my other interest is in singing with a community choir. Tony Ramshaw My wife Jane was diagnosed at 54 and I cared for her for nearly 8 years until she entered residential care early in I am on WA and National Alzheimer s Consumer Groups. I retired to look after my wife but in a previous life worked in Oil and Gas both here and overseas. My specialty was improving the performance of Oil and Gas and other large industrial facilities. I live in Perth very near the Swan River and feel myself to be very lucky. 5