Having end-of-life conversations with people with dementia

Caring for someone with dementia as they approach the end of their life can often feel lonely and isolating. However, engaging in conversations about death and dying can help families and caregivers feel more prepared and supported.  

According to Sarah Fox, the project coordinator for the HammondCare Last Days Dementia workshops, these discussions are crucial. 

To make it easier to have these conversations, HammondCare, in partnership with Northern Queensland Primary Health Network (NQPHN), recently ran a series of workshops conducted by palliative care nursing specialists, in Cairns, Townsville, and Mackay, and also online. 

Ms Fox, who is deeply passionate about initiating discussions about dementia and dying, said it was important to provide families and caregivers with the necessary tools and support during this challenging time. 

“Having timely conversations is paramount when caring for a person with dementia,” said Ms Fox.  

“As the disease progresses, it can be difficult to identify symptoms and ascertain advance planning preferences.   

“Dying is the same process for all, but for a person dying of or with dementia, unique symptoms can be experienced.”

Attendee feedback from the Last Days Dementia workshops in northern Queensland has been positive. 

Ms Fox said 94 per cent of surveyed participants felt more “confident to start conversations to make the person’s final days meaningful, comfortable, and fulfilled."

One workshop participant said “the topic of death and dying is usually a feared one. It was very refreshing to have a ‘normal’ conversation about it. Our society needs many more of them.”   

“We know that people caring for someone coming to the end of their life can sometimes feel lonely,” Ms Fox said. 

“By attending the Last Days Dementia workshops, we hope to make a difference by helping them feel prepared, while understanding their options, and allowing time for conversations and reflection.  

“The workshops are delivered by palliative care professionals giving people the practical knowledge and tools they need to manage this process and also relieves the uncertainty and confusion.” 

Each workshop aims to demystify death and dying with five focus areas: demystifying death and dying; future planning; what to expect; rituals, rules, and regulations; and grief and loss.  

Ms Fox said carers who took part in the workshop felt better equipped to navigate the little-understood and difficult journey.  

“Our hope is that we can raise awareness of this important topic and enable this conversation to gain momentum,” she said. 

“We believe the community must own its central role in end-of-life and bereavement care, with health professionals advising, supporting, and contributing to empower people to make informed decisions. 

“The workshops aim to strengthen death literacy for individuals, health care professionals, and the community.” 

Future workshop dates can be found here. 

This article has been republished from the Northern Queensland Primary Health Network. Read the original article.

Read more: ‘Dying to Know Day’ highlights the role of community in end of life planning | Queenslanders’ petition for compassionate assisted dying | People with dementia aren’t currently eligible for voluntary assisted dying. Should they be?

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