Board Members

John Quinn is a person living with YOD ( Younger Onset Dementia). He was diagnosed in 2010 at the age of 59 with Alzheimer’s Disease believed to be of the familial type as his mother, two aunts and an uncle were also diagnosed with dementia in their late 50’s or early 60’s. John believes that with early diagnosis, appropriate care put into place, and support,  it is possible to live WELL with dementia, albeit with effective modifications and adaptations to the physical and environmental living space.

John is an international speaker and has presented in Wellington, NZ, Budapest, Kyoto and Ireland as well as nationally and locally. John actively participates in dementia research, particularly related to social and quality of life care. He and his partner are currently associate investigators on a research project funded by the MRFF whose goal is to put together a range of quality care indicators for those receiving community and residential dementia care. John is a research affiliate of the University of Sydney. John’s passion is the provision of timely and person directed reablement care post diagnosis.

Commencement date: March 2020

Glenys has lived experience of caring for someone with dementia and is a dementia advocate for timely diagnosis and clear referral pathway. And has also advocated for staffs to be dementia friends.

She has been involved in quite a lot of media campaigns for both Dementia Australia and Brain Institute to promote awareness about dementia research.

Commencement date: March 2020

Elizabeth is a Healthcare Consumer Advisor with the Australian Commission on Safety & Quality in Healthcare, Metro South HHS, Qld Health, UQ, Griffith Uni and Health Consumers Queensland. Her background is in Organisational Psychology and she has particular interests in quality improvement, community engagement and research partnerships.

As the main family carer for her mother who developed dementia in the latter years of her life, she identified several areas where healthcare improvements could be made, for example in comprehensive care planning which should be inclusive of patients as well as family members.

Commencement date: March 2020

Leanne has participated informally in dementia advocacy in community care and residential care settings for her husband who was diagnosed with young onset Alzheimer’s disease. She has also participated in community awareness activities for dementia awareness of Younger Onset Alzheimer’s and the needs of other persons with dementia.

She has contributed to system changes include sharing of knowledge regarding communication with and interacting with persons with cognitive impairment, chronic health conditions and disability.

Commencement date: March 2020

Ivy is a member of Consumer Engagement Network for both The Prince Charles Hospital (TPCH) and Metro North-Queensland Health; a consumer representative in the Delirium & Cognitive Impairment Work Group, Fall Injures Prevention Work Group, the Malnutrition in Dementia Outpatients Working Gorup, and is a Charlie’s Angel in the Common Good at TPCH. Ivy has attained a Certificate III in Individual Support in Home and Community and Aged Care, a Certificate IV in Community Service, and a Certificate in Understanding Dementia from the Wicking Dementia Research and Education Centre in the University of Tasmania. She participates in monthly meetings; workshops; promotes awareness of delirium; assists in surveys and provides feedback to drafts of upcoming instruction and procedures.

Ivy currently cares for her husband who has lived with dementia and other chronic health issues for the past ten years. Ivy is passionate in understanding the needs of older patients and contributing to developing better care and support for patients and care partners.

Commencement date: March 2020

Karyn worked as a mental health clinician (psychotherapist) in both the public sector and in private practice for approximately 30 years before being diagnosed with Fronto-temporal Dementia (Semantic Variant). She is the co-host of the podcast ‘Talking Dementia with Heckle & Jeckle’. This podcast explores the unique pathway of living with a neurodegenerative disease with her cohost. From diagnosis to discovering more about the disease and unpacking the challenges faced by people living with Dementia Karyn is keen to contribute aiding researchers to discover more in the pursuit of better care for all.

Karyn is the mother of three sons and wife to an adoring husband who have all learnt together as they negotiate the ever-changing landscape of their family life.

We would like to acknowledge, with gratitude, the greatly appreciated service provided by previous Board Members.

Marianne Smith

Marianne had over 35 years working as a Registered Nurse. She has been involved in advocating for patients and consumers particularly in the areas of Renal medicine and dialysis and has supported women and families experiencing breast cancer.

She also has personal experience as a patient within the health system both in public and private, in Tasmania and interstate that developed her interest in improving the health system.

Eileen Jones

Eileen has experience of working to advance consumer engagement in a teaching hospital where she was a Chair, Health Community Council and Board member Children’s Health Queensland Hospital and Health Service. Her work influenced arrangement and a focus on family centred care in the hospital and community-based services.

She cared for her husband for 11 years following diagnoses of complex illnesses including Systemic Amyloidosis. She has her own substantial experience of the healthcare system including 3 month’s hospitalisation following a cerebral haemorrhage. She has a background in health services research at the University of Queensland, Royal Brisbane Hospital, Queensland Health Research and Planning and the Medical Board of Queensland. She is currently working to support the passage of Voluntary Assisted Dying legislation in Queensland.

Jenni Lawson 

Jenni has lived experience of dementia. She is a passionate dementia advocate and is currently on the Dementia Australia Advisory Committee. Jenni also worked as a Registered Nurse for 36 years prior to her diagnosis, and as a senior Nurse she was involved in many research projects.

Jenni has also co-produced two series of podcasts about the lived experience of dementia and has also authored a children’s book to introduce the topic of dementia to children and families as a gentle means to promote discussion.

Commencement date: April 2022