Advisory group members

CAROLYN BURROWS

Carolyn Burrows is a Speech Pathologist who is currently employed by the University of Queensland as the Clinics Manager and Business Development Manager for the Audiology, Speech Pathology, Occupational Therapy and Physiotherapy Clinics in the School of Health and Rehabilitation Sciences.  She currently overseas the management of ongoing day to day issues of the various clinics within the school, including budgeting and financial management. She has spent her career working with children with speech, language, fluency and literacy difficulties. Carolyn has previously worked as lecturer in the Foundation for Multi-Disciplinary Education in Community Health at the University of Adelaide. Carolyn also spent 5 years in private practice, and remained a clinical tutor and locum speech pathologist on the Child Assessment Team of Flinders Medical Centre in Adelaide.

DANIJELA HLIS

Danijela’s parents migrated to Australia in their seventies and did not speak English. Caring for them was difficult as culturally appropriate respite was practically impossible. Danijela enabled her father and mother to have a reasonably happy retirement. Mother Marija lived with dementia for 10 years, with Danijela by her side. To be a better carer, Danijela left her career in human resource management and tourism and studied aged care, dementia, life style and leisure, and worked as a bicultural social support worker. Danijela believes that people of CALD background often revert back to mother tongue and, similar to our Aboriginal community, need culturally appropriate care.  To raise awareness, she has just published her third book FORGET-ME-NOT/SPOMINCICE (a bilingual collection of stories and poems about people living with dementia). Danijela is a very active member of Alzheimer’s National CDRN (Consumer Dementia Research Network) and other Alzheimer Australia committees.

DENNIS EDWARDS

Dennis Edwards completed an Electrical Mechanic apprenticeship at Hobart College in 1957. Throughout his career Dennis worked in various fields. He has worked for the Eldridge Electric Company in Hobart, the University of Tasmania, Simpson Pope and at the Hobart Technical College. He also took stints in security, contract management, and undertook a role as a service engineer, at a mechanical services company. Dennis has been married to Marie Alena Edwards for 54 years, in their retirement they have travelled across Australia in a motorhome before settling back in Hobart. Dennis has volunteered for 6 years with the Tasmanian Family History Society in Hobart. Currently Dennis is a Volunteer Peer Support Person with the Council of The Aging and is now involved with Dementia Friendly Communities.

DENNIS FROST

Dennis lives in Nowra, NSW and was diagnosed with Fronto Temporal Dementia shortly after his 59th birthday. He is a driving force in various dementia friendly communities programs including as Inaugural Chair & Chief DAG at Southern Dementia Advisory Group in Kiama. In 2014 he became involved in this Kiama pilot project which was the first begun at a community level. With a background in education, Dennis is co-authoring a paper on the findings of the Kiama DFC Project.

DUBHGLAS TAYLOR  

Dubhg is care partner for Eileen. He helped develop the first dementia support organisation in Brisbane. He has supported and been involved with Eileen in advocating for her and others over the years. Including supporting Eileen through her dementia clinical trial journey. Doug is one of the co-founders of Dementia Awareness Advocacy Team (DAAT) and actively involved with their "Remember Me" Dementia Support Group. He spoke alongside Eileen at the Alzheimer's NZ Conference in November 2016. Doug has a Master’s Degree in Social Science and a clinical background in social work, working for the past thirty years as a therapist / supervisor / educator and lecturer. He still lectures at university level in CHC's Social Science School. He is also a public speaker at various community groups and organisations (Lions, Rotary and USQ) discussing dementia and other social issues. Along with Eileen, he is a fierce advocate in fighting for the rights of people living with dementia.

EDIE MAYHEW & ANNE TUDOR

Edie Mayhew and her partner Anne Tudor are from Ballarat, Victoria. Edie was 59 when diagnosed with Younger Onset Dementia in 2010. They are past members of the Dementia Australia Victorian Reference Group while Edie was an inaugural member of the Dementia Australia's National Dementia Advisory Committee. Edie & Anne's primary emphasis is on quality of life and care issues for people living with dementia. Building meaningful relationships and enabling a sense of belonging are two ways of achieving this. Edie and Anne have made presentations at dementia related events locally, nationally and overseas. They initiated the Bigger Hearts, Dementia Friendly Ballarat campaign and advance several other projects aimed at increasing dementia awareness, inclusion and empathy.  Letters of Love & Dementia and 100 Stories are two of these projects. In 2016, they received the volunteer’s diversity award from the Victorian Department of Health as well as Honorary Membership of Dementia Australia, Vic. Anne was awarded the Ballarat Mayor's Senior of the Year in 2017 for her contribution to the Bigger Hearts dementia friendly Ballarat campaign. They also have a much-loved Dementia Assist dog, Melvin.

EILEEN TAYLOR

Eileen was diagnosed with early onset familial Alzheimer’s in 2009. She was a personal counsellor for nearly 20 years (now retired) and has an M.in HS (Hons.) Rehab. from Griffith University. Eileen has been a research study participant at The Prince Charles Hospital Geriatric Research Unit since she was diagnosed, having participated in three clinical trial studies so far.  She is the currently the secretary of the Dementia Alliance International (DAI) and hosts their Australia online weekly support group. She is one of the co-founders of Dementia Awareness Advocacy Team (DAAT). In March 2016 she presented at the Dementia Australia National Consumer Summit in Canberra, followed in April by the ADI Conference in Budapest and at the ADI's Regional Conference in New Zealand in November of the same year. She also presented a poster at the Dementia Australia national conference "Be the Change" this year.  In addition to DFC Eileen is vice chair of the Dementia Australia Dementia Advisory Committee.

GLENYS PETRIE   

Glenys and husband John Quinn are both strong advocates for living well with dementia. Glenys takes every opportunity to highlight issues regarding the rights of people living with dementia to have equal access and opportunities, and reduce the stigma associated with dementia. Glenys and John have both been involved with many media campaigns for Dementia Australia and Dementia Australia (Qld). They have attended two Consumer Summits in Canberra, and in 2016 gave a Consumer Perspective to Minister Ley about the 'Clinical Practice Guidelines and Principles of Care for People with Dementia'. Glenys organises a Younger Onset Dementia Support Group in her area and is passionate about raising awareness, reducing stigma, inclusiveness and empowering people living with dementia.  Glenys is on many research committees and recognises the importance of people living with dementia to remain living independently in their own homes and their local communities. 

IAN GLADSTONE

Born in 1948 Ian Gladstone graduated from Fort Largs Police Academy in 1968 and joined the South Australian Police where he served for 16 years. Ian partnered with a fellow police officer and started a catering business, which he later sold, and undertook various roles in a variety of industries.  In 2004 Ian suffered a ‘stroke like’ neurological disorder, from which recovered very quickly. At the age of 58 years Ian was diagnosed with semantic dementia and his life was transformed. Since the diagnosis Ian has become one of the most active advocates on Younger Onset of Dementia and Dementia Friendly Communities in South Australia. He travels widely as a volunteer speaker with Dementia Australia in South Australia. He is also a member of International support group, Dementia Alliance International.

IMELDA GILMORE

In his late 50’s Imelda’s husband Graham displayed early symptoms of dementia however, it took until he was 64 to achieve a diagnosis. In telling their story prior to and since his death in October 2016, Imelda has felt validated and listened to as a wife and care partner. Imelda says she has seen the good and the bad in community support and it remains her desire to continue telling their story and honour the man she loved. She believes that despite the many challenges, she and Graham have made positive contributions to the dementia community, including as a member of the NSW Consumer Advisory Group and contributing to advocacy work of Dementia Australia nationally.

JAY DAVE

Jay’s father was diagnosed with Fronto Temporal Dementia and motor neuron disease, and passed away in 2015. Jay was his full time carer and has a passion for helping people and finding simple practical solutions to the issues faced by people living with dementia and care partners each day. Jay is a professional and prior to caring for her father had a 9 year career as an engineer, including many roles as project manager and operations analyst. Jay is 33 years old, which she wouldn't usually list as important but feels this is important as she represents the younger onset dementia and care partner community. Prior to being diagnosed, Jay says her “dad was the most amazing high functioning person ever- I miss him indescribably”.

JOHN QUINN

John spent over 35 years as an educator and mentor, predominately as an administrator in large Primary Schools. In 2010, at the age of 59, John was diagnosed with Alzheimer's disease of the Familial Type. Four years post diagnosis, he was seriously depressed and somewhat reclusive. However, he reluctantly attended a fundraising event where he met Ita Buttrose, who was National President of Alzheimer's Australia at the time. That meeting, and the ensuing discussions had a profound and positive effect that gave him back his self-esteem. John has since become a strong and passionate advocate for people living with dementia, and has spoken at numerous local, state, national and international events. His mantra is, “I am more than dementia. I'm still John."

KATE SWAFFER

Kate Swaffer is a humanitarian and activist for human rights in aged and dementia care. She was the 2017 SA Australian of the Year. Kate is Chair, CEO and co-founder of Dementia Alliance International, a global advocacy and support group for people living with dementia. Kate is also living beyond a diagnosis of younger onset dementia, diagnosed at the age of 49. She has been actively involved in the Kiama Dementia Friendly Community initiative since 2014 having initially been employed in that project for six months, and is a current member of the DFC Advisory Group. Kate is a full member of the World Dementia Council, a board member of Alzheimer’s disease International, and a current PhD student. Her first dementia book, What The Hell Happened to My Brain?: Living Beyond Dementia, and her second book Diagnosed with Alzheimer’s or another dementia, co-authored with Associate Professor Lee-Fay Low were released in 2016. Since 2010, Kate has given many key note presentations on dementia, human rights, disAbility, discrimination, stigma, the lived experience of dementia, dementia-enabling design principles, language, Dementia Friendly Communities, Prescribed Disengagement®, Information Technology for people with dementia, advocacy, dementia policy (local, national and global), and loss and grief.  

LINDA CARROLI

After Linda’s mother was diagnosed with dementia, she supported her to live independently at home until it was necessary to transition to residential dementia care. She is also a social and urban planner and has worked with government and communities on a diverse range of projects including social infrastructure, healthy cities/communities, creative communities, stakeholder engagement and community planning projects. Linda has initiated dementia awareness raising and information sharing programs and initiatives in her various networks including the coordination of an arts/creative project to develop activities for people living with dementia in a local hospital.

VAL SCHACHE

Val is a retired health professional with over 32 years of experience as a community physiotherapist in Ballina, NSW. Val is a passionate consumer advocate with experience resulting from her work on the Board of Dementia Alliance International. She is actively involved with dementia friendly communities, through her presentation work and roles on the national DFC Dementia Advisory Committee and local Ballina DFC Steering Committee.