The complexities of dementia

Image: Director of the Institute of Leadership, Jen Harland, with her dad, Allan.

As ACN proudly supports Dementia Awareness Week, Director of the Institute of Leadership Jen Harland shares her personal experience caring for people with dementia, including her father, Allan. Dementia affects almost half a million Australians, and 1.7 million care for someone with a form of dementia. In this reflection, Jen explores the vital role nurses play in supporting people with dementia through kindness, presence and genuine connection.

Dementia is inherently complex. Textbooks generally define it as a progressive clinical syndrome characterised by decline across multiple cognitive domains, including memory, language, executive functioning, judgement, and the capacity to undertake everyday activities. Yet this clinical description only captures part of the picture. Throughout my nursing career, I have cared for people living with dementia, and I remain humbled by their trust and courage. Imagine, even briefly, the disorientation of not remembering key events or being unsure whether you have eaten breakfast. The reliance placed on carers and health professionals in these moments is profound.

My work is complex. When asked what I do, I often pause, aware that the answer may not be easily understood. As Director of Ageing and End of Life Policy, I worked at the intersection of Commonwealth and state responsibilities, navigating aged care reform, palliative care systems, and the diverse needs of older people. At times, the policy environment could feel abstract, until I remembered the faces of those I once nursed, particularly people living with complex dementia, and the deep impact their illness had on their families.

One of those people was Mrs Jones I nursed her at Rozelle Hospital in the 1990s. On many days she was pleasant, cooperative, and seemingly at ease within the routines of the ward. In her earlier life she had been a Director of Nursing, and her professional understanding of clinical environments often shone through. But other days were more difficult. One of dementia’s cruellest features is that moments of clarity can coexist with profound confusion. On certain days, Mrs Jones would recall fragments of her past and struggle to comprehend why, as a former Matron, she was confined against her will. As a 26 year old nurse, I found it heartbreaking to de-escalate her distress and gently encourage her to join others for lunch, knowing that her indignation came from a place of preserved dignity, insight, and a life lived in service to others.

My father’s life is also complex. At 92, each day brings uncertainty. He wakes not knowing what lies ahead; my mother guides him through choosing clothes, preparing meals, and attending outings. Earlier this year, he asked about my work. For years he has believed I am still a nursing lecturer at the University of Wollongong, where I taught more than two decades ago. Yet on this day, he appeared genuinely curious about my current role, asking thoughtful questions about how I support older people in the ACT. He was particularly intrigued to learn that caregiving extends beyond the walls of a hospital and listened attentively as I explained government processes and responses to issues such as aged care access, respite, and end of life care.

When my mother returned to the room, he proudly announced that I had taken on “a new job, taking widowers shopping on a bus.” He followed this with a beaming declaration of how proud he was of my work. In that moment, the accuracy of the details mattered far less than the sentiment.

On reflection, my father does not need to remember what I do. Throughout his life, he cared deeply for others and contributed to his community. Dementia has not altered his values. What mattered to him was that I was doing something meaningful, something that served people.

Dementia is complex, and regardless of where you work in the health or social care system, it is inevitable that we will encounter people affected by it. The invitation is to slow down, to listen beyond words, to connect through presence and genuine engagement, and above all, to be kind. People living with dementia may not always “get it right”, and neither do we. Life itself is complex.