My passion for dementia research

by Yun-Hee Jeon, Susan and Isaac Wakil Professor of Healthy Ageing

It was during my post-doctoral research position about 20 years ago when I started learning about person centred dementia care and dementia care mapping. As a registered nurse (South Korea and Australia trained in 80s and early 90s respectively), we learned very little about dementia (there was a very thin chapter in our nursing textbook describing what dementia was, how it’s considered as mental illness associated with senility and its comparison with delirium). Reading Tom Kitwood’s work and conducting dementia care mapping 20 years ago completely shifted my understanding of dementia care and support for people living with dementia and their family. At that time many people didn’t believe person centred care was even possible for people living with dementia. I still remember some senior clinicians saying that person centred dementia care would not be appropriate for community care or hospital settings. Twenty years on I don’t think we are a great deal better in providing person centred care than before, but we are at least accepting the fact person centred care underpins all types of dementia care.

Conducting several hundred hours of dementia care mapping and working with care staff in aged care homes highlighted what worked, what did not work and what we would need to do to help care staff and managers to deliver person centred care. What was striking was training care staff about person centred dementia care alone had a great deal of limitations in bringing about the change required to improve care quality and health and wellbeing of people living with dementia. The role of middle management in care homes was far more significant than people would like to admit. This led my work on developing and implementing an aged care specific clinical leadership program through a world first cluster randomised trial. Despite its success in enhancing the overall work environment in aged care, the program failed to attract sufficient interest from the aged care industry in Australia to be rolled out more widely. Whilst no one dared to question the importance of leadership skills and qualities in aged care, no one wanted to invest money to support capacity building of middle managers in aged care.

In more recent years, my research has focused very much on reablement and rehabilitation for people living with dementia at home and also highlighting the importance of social health in dementia prevention and care. It’s rewarding to be able to work with people living with dementia and their care partner, seeing their improvement in daily activities and sense of control and hope. Unfortunately, similar to the notion of person centred care 20 years ago, I have been facing oppositions/denials from multiple agencies that reablement approaches to care and rehabilitation are not appropriate for people with dementia. The greatest challenge is the public (our society’s) attitudes towards dementia and lack of understanding. We as researchers and academics tend to move a lot faster than what the society is ready to accept, of course with a hope one day people will follow … There needs a lot more work to be done to help the public understand dementia better and change their attitudes of therapeutic nihilism towards dementia, with an emphasis that there is hope after the diagnosis of dementia, if we want to advance science and care in a reasonable speed.

Social justice and respect for older people are important principles guiding my work and life. Despite their great contributions to society and life-time wisdom to share, older people are often subject to ageism. The term dementia bears more challenges than other health conditions as it is ageing related. If such condition was prevalent among children, we would not be in this position after several decades of work on person centred care. I will continue my work to be voice for those in need and believe I can in some small way help improve care and services for people living with dementia and care partners.