The diagnosis of Younger Onset Alzheimer’s Disease that I received in July 2019 at the age of 59, had a profound and devastating impact on me. As I started to lose confidence in myself, I became increasingly socially disconnected and withdrew myself from any involvement in the wider community. Quite simply, a ‘darkness had surrounded me’, where not only did I feel sorry for myself, but with an uncertain future, life now had little if any meaning for me. However, this shallow perspective changed after a chance trip to Japan to watch the Rugby World Cup in September 2019 with a group of mates.

This abstract describes how my decision to return as a volunteer surf lifesaver in September 2020 became the catalyst for challenging myself to step out of my comfort zone, face my fears and start competing in master’s Swimming and Surf Lifesaving at a local, state and national level. Having now recently achieved this goal, I am now planning to compete in my first international event later this year.

For me, this journey has never been about a podium finish. Rather, I want to inspire others who are also living with dementia, that it is still possible to live a life that you value, provided you have the support of others, confidence in yourself, the motivation to never give up and perhaps most importantly, you need to remain positive in your outlook on life.

PRESENTER BIO

William Yeates was diagnosed with Younger Onset Alzheimer’s Disease in 2019 at the age of 59. He shares his experience competing in swimming and surf lifesaving, and finding a new perspective on life along the way.

VIDEO ABSTRACT

The abilities of people living with dementia need to be recognised, acknowledged, and supported.

The Dementia Advisory Services program, individually or collectively, enable the person living with dementia to reengage in life. People living with dementia report enjoyment and a sense of achievement and pride. Some support persons have expressed satisfaction with the outcome for their family members living with dementia, in terms of improvement in mood post-sessions, increased communication and socialization, and a sense of purpose. This comprehensive program encourages independence, engagement, connection, and opportunities for leadership while acknowledging the strengths of the person living with dementia.

Donna Lee will share her experience of being diagnosed, feeling it was like a death sentence, and the effort she put in to reach where she is now. Today, Donna sees herself as a confident person who has reengaged in life by focusing on her abilities. Donna is relearning lost skills and passions. Donna finds herself in a better place emotionally, as she states that she has found herself and is once again a mum. Donna advocates for people living with dementia, and enables other people living with dementia to accept the changes that come with diagnosis.

PRESENTER BIO

Donna Lee is an active member of the community and her Church, and an advocate for people living with dementia. Donna shares her personal experiences to encourage support persons and the general population to understand what people living with dementia are going through. Donna lends her voice to people living with dementia who cannot express themselves. She radiates positivity and encourages other people living with dementia to look at themselves and their abilities positively.

Diane Cross, a social worker by profession, has been working with people living with dementia and their support persons for the last nine years. Diane is passionate about enabling people living with dementia and their support persons to recognise and use their strengths, thus enhancing their sense of self and the quality of their lives.

ABSTRACT

Despite increasing evidence supporting relationship-based care (RBC), including cost-effectiveness, the recent Royal Commission into Aged Care Quality and Safety found that in general, Australian aged care homes had not adopted this model.

Our investigation of RBC in five Sydney aged care homes included 14 residents living with dementia-associated behaviours, and 139 of their formal and informal care partners.

Key findings were that the observed practices in four care homes indicated a weak appreciation of RBC. Care home priorities were meeting accreditation standards and adhering to government funding requirements. The one care home that practised RBC adhered to its documented values statement, while meeting government standards requirements.

Factors associated with RBC included:

1. Staff across all organisational levels trained in and committed to RBC;
2. Recognition of the associations between quality of relationships/relating among the partners in care (staff, family and resident), quality of care and resident quality of life;
3. Management and staff collaboration, continuity and empowerment.

Since resident and family experiences of RBC, or lack thereof, were associated with the care home’s culture, care practices and people management, the Australian Government can do more to elevate current standards by supporting and monitoring care home quality against RBC requirements.

PRESENTER BIO

Janet Mitchell (BA, MEd, MBA) recently submitted her PhD thesis. During her PhD candidature she cared for her husband with younger onset dementia. Her primary research interests are relational person-centred care and reablement, especially in association with dementia-associated behaviours in residential aged care. Prior to this she had worked in corporate Australia. She was member of the Expert Advisory Group for the research study Improving care in end-stage dementia. Consumer representation has included the DCRC Grant Applications Review Panel, the Steering Committee for the Halting Anti-Psychotic Use in Long Term Care Project and the NSW DBMAS Reference Group.

VIDEO ABSTRACT