ABSTRACT

Every three days an Australian child is born with childhood dementia, a rare genetic disease that describes over 100 different conditions.

In this panel session, you will hear from three experts across practice, research & advocacy who will share stories of how we can make a difference in the lives of children living with dementia and the families who support them.

PRESENTER BIO

Dr Ineka Whiteman is the Head of Research and Medical Affairs at BDSRA Australia, a not-for-profit organisation providing family support, education and research funding for Batten disease, one of the most common childhood dementias.

Megan Donnell is the founder and CEO of the Childhood Dementia Initiative. She is the mother of two children who have childhood dementia caused by Sanfilippo Syndrome.

Suzanne Nevin currently works as a researcher investigating the psychosocial impacts of paediatric neuro-genetic disease at the Sydney Children's Hospital, Randwick. She has a Bachelor of Psychology (Honours) and is currently undertaking her PhD with the Collaboration on Genetic Epilepsies and Neuorgenetics Sydney Children's Hospital Network (CoGENes) and the Behavioural Sciences Unit (BSU). Her PhD is focused on enhancing current understanding and identifying the key features of the psychosocial support needs of families affected with severe neuro-developmental epilepsies, as well as developing evidence-based resources to improve psychological outcomes.

Chair

Dr Mustafa Atee is a Research and Practice Lead (Team Leader) at The Dementia Centre/HammondCare. His PhD led to the development, validation, implementation and commercialisation of PainChek®, an artificial intelligence-powered pain assessment medical device for people living with dementia.

ABSTRACT

Introduction
It is expected that about 380,000 care workers will be deficient as the first baby boomers become over 75 years old in 2025. In order to make up for the shortage, it is required to hire foreign care workers and utilize nursing care robots and information technology. Against this background, IoT sensors have been developed rapidly. However, it may be doubtful that those sensors are effective for dementia care.

Objective
The purpose of this study was to explore the significance of IoT in dementia care.

Methods
The sensors developed in the field of dementia care in Japan are qualitatively analyzed from two points. The first point is to contribute to improving QOL of people with dementia. The second point is to reduce the burden on the caregivers.

Results and Discussions
There are things that detect and inform the behavior of people with dementia in the room, to visualize sleep conditions, to measure residual urine, and body pressure dispersal instruments. Things that detect the behavior of people with dementia are used from the viewpoint of reducing the burden on caregivers. Other sensors contribute to improving QOL of people with dementia only when caregivers can easily read the meaning of data.

PRESENTER BIO

Professor Hisayuki Shimoyama is a Professor at DOHO University in Japan. Majoring in Sociology, Prof Shimoyama's research field examines long-term care facilities.

Associate Professor Atsushi Ushida is an Associate Professor at DOHO University in Japan. His major is care and welfare.

A/Prof Akiyo Itoh is an Associate Professor at DOHO University in Japan. Her major is nursing care.

VIDEO ABSTRACT

ABSTRACT

A brave new world sees a Dementia Doula sitting front and centre in end-of-life dementia care provision. The role fills an ever-widening gap where families, care staff and the person themselves slip through the cracks feeling unsupported and missing out on tailored end-of-life support. A Dementia Doula provides the missing piece of the compassionate care puzzle when it’s needed most.

Research suggests there’s a need for certain key elements in end-of-life dementia care which are not currently part of everyday palliative practices when compared to other life-limiting conditions such as cancer. A Dementia Doula is best placed to fulfill the following requirements highlighted as lacking:

• recognition of end-of-life signs
• provision of supportive care to families and person themselves
• creation of effective working relationships with health professionals
• continuing care after death
• valuing role of care staff by ongoing learning and support

A Dementia Doula is a conduit between existing medical and personal care practices bringing a more coordinated and all-encompassing holistic approach to end-of-life dementia care. They do so in a timelier and more functionable way leaving care staff and families better placed in identifying individual needs and the provision of more tailored comfort care.

PRESENTER BIO

Wendy Hall has worked in health and aged care for over 25 years. She is the Director and founder of Dementia Doulas International and author of Dementia can’t take everything! and The Dementia Doula. She holds a Bachelor of Nursing, a Diploma of Applied Science (Ambulance Studies), a Certificate IV in Workplace Assessment & Training and a Certificate IV in Celebrancy. Wendy has used her diverse skillset within a variety of settings including the acute care, pre-hospital, community & residential sectors. Her role in the development of training and mentoring for emerging Dementia Doulas has been evolving over many years and brings together her areas of passion to better serve those she represents. Her interactive approach challenges mindsets and encourages those supporting someone or working within the area of dementia to explore a different way of thinking. Her goal is to shift preconceived ideas about existing barriers to dementia care and influence the palliative care space ensuring no one goes it alone.

VIDEO ABSTRACT