Palliative care and dementia: Understanding the connection and supporting families through tough decisions

Did you know palliative care isn’t just for the final days of life? For people living with dementia, it plays a vital role throughout the condition, supporting comfort, dignity, communication, and quality of life.

In this episode of Voices in DREAM, Yashi and Tiffany, an experienced nurse from Palliative Care Victoria, explore how dementia and palliative care are closely connected. We discuss when decision-making becomes difficult, how families cope when their loved one loses capacity, and the emotional stress and guilt that come with tough choices. We also look at how the aged care workforce can support families, guide conversations, and ensure care stays focused on what matters most to the person.

Tune in to learn about:

• What palliative care really means in the context of dementia
• Why dementia is recognised as a life-limiting condition
• The emotional experience of families when making difficult decisions
• How care teams can support families through grief, guilt, and uncertainty
• Why early conversations create better outcomes for everyone

If you work in aged care or support someone living with dementia, this episode is a must-listen. 

Transcript

SPEAKER_01 0:00

Did you know that many families don't realize when pilotic care begins for a loved one with dementia? Early, compassionate conversation can bring comfort, clarity, and peace to everyone involved. Hello and welcome to Voices in Dream. This podcast is by the Dream team, a collaboration between the Wikim Dementia Research and Education Center and the Dementia Support Australia. Whether you're a support worker, a nurse, a volunteer, or someone who cares, then you are in the right place. Voices in Dream connects you to a community of edge care workers to support you to support people living with dementia. I'm your host, Yachi, and each episode we share real stories, practical insights, and support for anyone involved in dementia care, especially those in respite settings. So let's learn together one shift at a time. In today's episode, I'm joined by Tiffany to discuss how pile deep care and dementia are related. Thank you for being here today again, Tiffany, and welcome to Voices in Dreams. Thanks, Yashi. Tiffany, I just want to talk about what is piloty care and how it is related to dementia. Can you give us a very broad understanding or overview of what pile-type care is and how we can navigate pliative care if someone is living with dementia?

SPEAKER_00 1:20

No worries. Good question. So palliative care is its own medical discipline and it's care that you offer a person when they're living with a life-limiting condition, and it supports their clinical care, their physical care, as well as their emotional, spiritual, cultural care as well. And the care that's provided is to meet the person where they're at and provide them a quality of life and comfort. And it does complement the natural dying process at the end, but it can begin much, much earlier than that. For a person living with dementia, in the early days of diagnosis, for example, palliative care may focus more on setting goals of care and looking at advanced care planning and identifying what the person wants and what their preferences would be. As their disease progresses and their symptoms change, palliative care would meet them where they're at. So when you're talking about someone who's going through cognitive decline and they can no longer do things that they may have enjoyed, for example, baking or working in the garden, then you would be able to put in place a level of care that allows them to achieve parts of those activities. So it could be helping them time their medications so they're less drowsy so they can participate in an activity program or providing them occupational therapy so that they can physically get into those activities. When we're talking about advanced dementia, that's when we certainly see that increased priority of clinical care. Because this is when you're starting to navigate symptoms that are more challenging in that clinical sense to manage, whether it's terminal delirium, confusion, aggression. It could be things like difficulty swallowing and having to modify nutrition needs. It could be managing pain associated with their condition. So it's very much focused on what that person needs at that point.

SPEAKER_01 3:16

Yeah. When we think about pileotype care, we only think about someone who is in their bed in their room in that later stages with syringe driver, where you do the mouth care, eye care, pressure area care. That's what we think about. But as you mentioned, the journey begins really early, as soon as almost as soon as you get diagnosed with dementia, right? Absolutely.

SPEAKER_00 3:37

And we're finding that people who plan earlier have better outcomes. One example is uh someone who's developing recurrent chest infections. Instead of taking recurrent tricks to the hospital and having to get IVs and antibiotics for every uh presentation, a family can actually have a conversation with their GP and decide at what point do they want to start looking at different types of care? Do we have maybe an in-reach service or a GP come to the facility instead of having to send the resident off to the hospital for treatment? Um, is there a way that we can, instead of giving IV antibiotics, move to oral antibiotics to save them that distress? Um and having very open conversations of if antibiotics aren't working, do we continue giving them? Or do we look at other treatment that can help resolve the symptoms as their body processes that infection?

SPEAKER_01 4:28

And I believe family play a massive role in this as the dementia progresses, because um, as this disease progresses, the ability to make decisions, our judgment, our insight declines as well. This is a very well-known fact because it's a progressive neurodegenerative disease that affects so many functions of our brain. So, what role do uh the family members play in terms of making decisions about the care and what to do and what not to do? Is it all um decided by them or do we start planning while the person is still able to have some input in decision making? How does this work?

SPEAKER_00 5:04

The topic very close to my heart. So at Palliative Care Victoria, we actually develop some resources called the dignified respectful decisions resources. And they're basically web-based information that helps support family members through that decision-making process when they're supporting a relative who has lost the ability to communicate their wishes and preferences. Um, more to that though, we often find that family members don't quite know the role they're taking on when they start supporting a person with decision making. So often in the early days, they may be helping them with grocery lists, and then you know, years down the track, suddenly they've been asked what their goals of care are in the hospital. And it can be really tricky. It can be a tricky role to kind of navigate and take on. Um with families, that's very much one of the challenges to making decisions is if they've never had those conversations before or they've never reflected about the complexity of decisions they'll have to make later down the track, they can feel somewhat blindsided as their person's health starts to deteriorate quite rapidly at times. Um and they can make impulsive decisions because they're making them without much forethought. They're usually in a state of crisis, they're normally quite overwhelmed, um, and they're grieving. And how can we help them? I think it's about collaborative conversations. Uh, families should never find out that a person's health is deteriorating when they've deteriorated. They should find out much earlier.

SPEAKER_03 6:33

Yeah.

SPEAKER_00 6:34

Um, we need to have conversations with families early and often. Um, we need to help them see what we see through objectifies so that they can make objective decisions. Um helping them have a better understanding of a person's health, particularly for an older person who they've got quite complex health needs. They may be living with dementia, but they may also be living with high blood pressure, diabetes, uh, some lung disease. How are all of these different disease states going to interplay with one another? And that's where you start talking to geriatricians and GPs, saying, okay, what is the whole picture of my family member's health? And what do I need to consider down the track?

SPEAKER_01 7:12

When it comes to making decisions about, let's say, medications or whether to send the person to a hospital or whether to keep them in residential care homes where they live comfortably, family members will feel guilty, right? Do you have any stories that you can share where you've noticed that they feel guilty and how you can help them understand that this is the right thing or this this was the option that was available for them?

SPEAKER_00 7:36

Guilt is such a tricky one for the family member when they have someone who's living with dementia, because I think they feel guilty at different points for multiple reasons. I think you can feel guilty that you're angry, you've put them in care, but you're relieved. You can feel guilty that you know you can't provide all the care yourself, um, and then guilty that you've made a decision and you don't know if it's the decision they would want or if it may expediate death. I think that it's very much coming to what is the root of their guilt. Um, a family member who is confident they've made the right decision doesn't usually feel guilty. Um, if anything, they feel kind of vindicated that you know, dad said he never wanted to go to hospital and now he is dying in the aged care home, surrounded by staff who are here, he's comfortable, um, he's getting all our family can visit him. Um the guilt washes away because you sit there and think he's he's having a good death. Um, I think that it's very much about validating the family on decisions and walking with them. And I think it's also important um no decision is a hundred percent up to one person. We always make them collaboratively. If a doctor or a nurse thought you were making a terrible decision, they would very much tell you. Um and they, you know, have a professional integrity to challenge that. I think for the most part, we know families come to these decisions out of love. And as a healthcare professional, I think it's our role to support a family in understanding what we know of the person's health and the treatment available so that they can feel comfortable with the decisions that get made.

SPEAKER_01 9:18

Yep. I guess then we can all emphasize the fact that how important it is to start planning early when the person is still able to have input. This is what I want, this is um what I don't want. So that um the person that's making decisions for them in the later stages don't feel burdened or overwhelmed or even guilty for making the decision that they choose to make. Do you have any final take-home messages for those who are supporting families in making decisions?

SPEAKER_00 9:44

The things that I would tell a family member is it's okay to not feel okay all the time in that role.

SPEAKER_02 9:51

Yeah.

SPEAKER_00 9:51

I think that it's very challenging and it's often underrecognized, particularly when a person moves into residential age care. They tend to be feel a little bit forgotten because once the person moves into care, they've moved into care. So you're not a carer anymore, right? Um but you're still carrying quite a weight from having to make ongoing decisions for that person.

SPEAKER_03 10:10

That's so true. That is so true.

SPEAKER_00 10:12

And even visiting them and thinking about them and grieving for them, I think that there's a huge load that still carries.

SPEAKER_03 10:20

Yeah.

SPEAKER_00 10:20

Um, reaching out for support is crucial. I think whether it's a trusted friend, a family member, the staff, um, you know, a care support, phone number, anywhere uh where you can kind of release a bit of that pressure, it's super helpful.

SPEAKER_03 10:38

Yeah.

SPEAKER_00 10:38

Um I would say check in with staff often. Yeah. Be that annoying relative that asks the nurse asks the nurses how mum's going all the time.

SPEAKER_03 10:47

Yeah.

SPEAKER_00 10:48

Um, because ignoring deterioration is when you have the worst experience of grief because it sneaks up on you. And that's when you feel the guilt of the minutes and the hours and the days that you've got left and you've lost.

SPEAKER_03 11:01

Yeah.

SPEAKER_00 11:02

Um and I think ask questions. Ask a million questions.

SPEAKER_01 11:06

Jump on the internet and ask questions. There's no wrong question as such, so you can ask whatever you want to ask about your family member. I I think I'll be one of those annoying relatives who would want to know everything about you know my parents, especially if they're in that situation. I would like to know what's going on and how their health is. Because you kind of expect that it's it will um it will sort of deteriorate from the time you get the diagnosis. So yeah, I think that's a very good point. Definitely.

SPEAKER_00 11:31

And I think the the golden rule is all the decisions you make should be the decision that they would make for themselves if they were sitting in your shoes.

SPEAKER_03 11:40

Yeah.

SPEAKER_00 11:41

You really have to put aside what you think is in their best interest because you love them and we all want our family to live forever. Yeah. But it has to be if I was in this, if my family member was in this position and had to speak for themselves, what would they want? Yeah. If they've never told you, you can usually reflect on past episodes where they've made decisions and try and reflect on those values and where those decisions were guided from.

SPEAKER_01 12:06

Yeah. Thank you so much for sharing your knowledge again, Tiffany. It's so lovely to have you here. Thank you, Yashi. And before we go, here is something for you to think about. How do you think we can support family members in decision making or how can we help them make decisions? Please do let us know. Thanks for listening to Voices in Rim today, connecting you to community of age care workers to support you to support people living with dementia. If you found this episode helpful, share it with a coworker or even mention during your handover. Let's keep building a strong connected care team. Follow the Wiking Center on Facebook and LinkedIn for more episodes and free resources. And also to keep learning and growing, check out our free courses like Dream Program, Equip Learning, and Understanding and Preventing Dementia. Take care of yourself and those you support. And see you next week on Voices in Dream. Bye.