The Hardest Conversations

It can help if caregivers face the reality of end-of-life when caring for someone living with dementia. Doing so may allow caregivers to prepare emotionally and practically, ensuring that they can provide the best possible care and support during the final stages of life.

“I didn’t understand that Alzheimer’s disease was a terminal illness… I don’t think I was well prepared for that realisation”

Approaching these Conversations

Early discussions can help caregivers and families make informed decisions about medical treatments, end-of-life care, and other topics, giving loved ones the opportunity to share their wishes.

Not sure where to start?

Uncomfortable conversations around end-of-life are challenging, but it’s important to ask questions to ensure that your loved one’s wishes are respected, and their needs are met. Some example questions include:

What are your preferences for medical treatment?
Do you know what your loved one prefers when it comes to life-sustaining treatments, such as resuscitation, ventilation, and feeding tubes?
Who will make decisions on your behalf?
Who does your loved one trust to make decisions regarding their health and/or finances if they are unable to do so?
Where do you want to receive care?
It is important to understand your loved one’s preferences for home, in hospice, or hospital care.
What are your end-of-life wishes?
Some people have strong preferences for burial or cremation and have wishes regarding funeral arrangements.

“I just need to know what your husband would want done under these circumstances…”

Difficult Decisions

While discussing decisions with loved ones is important for understanding their wishes and ensuring that their preferences are respected, when the time comes to make those decisions, it can be an incredible challenge.

The emotional weight of the situation, combined with the pressure to make the right choice, can make it difficult to navigate these moments. Listen to our caregivers explain how they have approached difficult decisions while caring for their loved ones living with dementia:

Coping with the burden of decision

While there’s no one-size-fits-all solution to dealing with the burden of decision-making, the following strategies may support you:

Recognise Emotions

It’s normal to experience emotions like sadness, confusion, or anxiety. Recognise these feelings and seek help where needed.

Communicate Openly

Share your thoughts and feelings with trusted family members or friends. Open communication can provide emotional relief and help you feel less isolated.

Seek Professional Help

Consider consulting with professionals such as GPs, therapists, or support groups. They may be able to offer guidance, coping strategies, and a safe space to express your emotions.

Be Patient

Understand that it’s normal to feel overwhelmed and that making difficult decisions takes time. Be kind to yourself and allow yourself the space to process your emotions.

Share the Love

Don’t hesitate to ask for support from your loved ones. They might be able to offer practical assistance, emotional support, and a different perspective.

Practice Self-Care

It’s easy to forget about yourself when you are forced to make difficult decisions. Remember your own physical and mental well-being are important to maintain clarity.

“I know that he would have loved that…”

References

Thank you to our caregivers Jane, Marta, Neil, and Luke who were an invaluable primary resource for the content on this website. Other online resources that were consulted include the following (all were accessed in March 2025). The information in these sources may not comply with the Australian regulatory environment. The intent of providing this further material is informational and not as advice; any information provided in these sources should be discussed with your healthcare professional and does not replace their advice.

Alanazi MA, et al. Navigating end-of-life decision-making in nursing: a systematic review of ethical challenges and palliative care practices.

Wolff JL, et al. SHARING Choices Investigators. Advance Care Planning, End-of-Life Preferences, and Burdensome Care: A Pragmatic Cluster Randomized Clinical Trial.