Walking together: Dementia and palliative care pathways

Did you know that many families don’t realise when palliative care begins for a loved one with dementia? Yet early, compassionate conversations can bring comfort, clarity, and peace to everyone involved.

In this episode, Yashi, and Tiffany, an experienced Nurse from Palliative Care Victoria, explore how dementia and palliative care pathways connect, and how aged care workers, nurses, and support staff can better guide families through this emotional stage.

Tune in to learn about:

• How dementia progresses over time and why palliative care is an important part of supporting people living with dementia and their families.
• How and when to start conversations about palliative care in dementia, including ways to approach these discussions with sensitivity and clarity.
• The role of empathy, honest communication, and shared understanding in helping families navigate difficult decisions and future care planning.
• How a palliative approach can support dignity, comfort, and meaningful connection throughout the different stages of dementia.

Whether you work in aged care, respite, or support someone living with dementia, this heartfelt conversation offers warmth, understanding, and practical guidance.

Transcript

SPEAKER_00 0:01

Did you know that many families don't realize when palliative care begins for a loved one with dementia? Yet early, compassionate conversations 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 Wiking 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 aged 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 this episode, I'm joined by Tiffany to discuss how empathy, communication, and person-centered care can transform the palliative care experience from older people living with dementia and families alike. Welcome to the Voices in Dream and thanks for being here today, Tiffany. Thanks for having me. I just wanted to know about yourself before we start our conversation. Can you tell us a little bit about yourself and your role?

SPEAKER_01 1:16

I am a palliative ICU nurse by background. So I accidentally fell into the field of palliative care, obviously, just seeing people pass away in the ICU for years on end. I developed an interest in public health, probably in the last, you know, five, six years of my career. Did a master's in public health and then uh found a fantastic opportunity with the palliative care Victoria. And at the time we were developing a resource that helps families when making decisions about palliative care and medical treatment, uh, specifically when their relative has lost the capacity to make decisions. And within residential age care, that is typically a lot of people living with dementia.

SPEAKER_00 1:55

That is really interesting. And I guess I want to start our conversation by asking you a very broad question because you've just mentioned the word dementia and then not having enough capacity to make decisions about the pilotip care. So, my broad question to you is what is pilotive care and how is it related to dementia care? Because we don't really talk about it.

SPEAKER_01 2:15

Very good question, and you are correct, it is not very well spoken about in the community. Palliative care in a nutshell is its own medical specialty and came about in the last 40, 50 years, really. It's essentially holistic care that supports a person living with a life-limiting condition.

SPEAKER_02 2:32

Right.

SPEAKER_01 2:32

And for many people living with dementia, um, it's glossed over the fact that it is unfortunately a life-limiting condition and there is no cure. What palliative care is though, is it's care that meets the person where they're at. So for a person in the early stages of a dementia diagnosis, for example, palliative care may focus more on setting goals of care and doing advanced care plans and articulating what is acceptable and unacceptable in terms of the care and medical treatment they would want now and later down the track.

SPEAKER_00 3:02

That is really interesting because um, for me, you know, when I was in aged care, for me, piley tip care was more to do with end-of-life care. There's a big misconception, right?

SPEAKER_01 3:13

I think it's tricky in aged care because many aged care professionals quite innately practice what we call a palliative approach to care. And that's essentially offering care options that provide the greatest benefit over burden. Because no one who who lives in residential aged care expects to live another 40, 50 years there. Yeah. And so the idea is if you're in the spinal chapter and you have finite time, you want to do the things that um the most benefit and aren't likely to bend uh to give you just excess burden.

SPEAKER_00 3:46

As I mentioned before, um, we don't often talk about pilot care in the context of dementia, although we know that dementia is a progressive neurodegenerative disease, as you mentioned before. Um, how can we start this conversation with families? And is there a right way to approach it?

SPEAKER_01 4:01

I think it's important to realize that actually people when you're working in aged care, you're the eyes and ears on the person. And the family are in the thick of it. So they're often not seeing it the same way you are. And particularly when you're seeing the person change over time related to the progressive nature of the disease. So you're seeing them slow down, you're seeing them eating less, you're seeing them sleep more, yeah, you're seeing them have more frequent infections and a harder time recovering from each. Uh, you see them lose their mobility over time. I think that these are the things that families neglect because they just have this assumption that the person will live forever until they don't. And I think that's something multifactoral too. There's a lot of um anticipatory grief that goes on for people living with dementia in their families. From the point of diagnosis, essentially you start grieving for the years that you're gonna miss out on. And especially as the disease does progress and those symptoms do become much more uh hard work to deal with when you are looking at, you know, increasing care needs, um, behaviour that it may be difficult to navigate together. It can be that they're overwhelmed with the now, they're not ready to think about what's next.

SPEAKER_00 5:15

Yeah, so how how can we start the conversation?

SPEAKER_01 5:18

I think it's very much an ongoing conversation that has to occur from the day dot. And I think it starts from diagnosis, it starts from making sure the person has available resources and being very encouraging on they need to understand what is in store down the track. They may not be ready to have that conversation today, but it can be helpful to give them something to take away of what does it look like when you enter the advanced stages of dementia and then having that open door to be able to ask questions. I think it's also very important to keep reintroducing the palliative approach theme. So when a person's going to hospital, sitting down with a person and their family saying, This was our third hospital admission, this will be you. Do you want to keep going to hospital if we keep getting these flare-ups? Do we want to look at some other options? Um, are there any medications? If someone starts refusing to swallow their tablets, is having a conversation with a family saying, look, they're refusing to have these tablets every single day. And we've had a chat with the doctor and the tablets aren't actually offering us much to benefit at the moment. Would you be comfortable if we stopped giving them? Or maybe we can look at other routes of administration if it is something that you want to continue with. It's always reframing what's going to give the person the best quality of life instead of what they're kind of thinking at the moment.

SPEAKER_00 6:42

Yeah. It's a very difficult conversation to have, I must say. And we've all been in that place. Absolutely.

SPEAKER_01 6:48

I also think um there's a large focus on the negative symptoms as deterioration takes place. But I think that what can actually help engage the family is talking about positive aspects of care too. So the elements that are going to bring quality of life.

SPEAKER_02 7:02

Yeah.

SPEAKER_01 7:03

In terms of if mum was a baker and she's beyond the point where she can really navigate the kitchen and put together a cake, but where can we actually do a collaborative activity and help her enjoy these satisfying activities? Um, you know, if someone's a keen gardener, we're not going to go send them out to the botanical gardens to roam free, but we may be actually able to sat like accompany them in the garden and still enjoy those things that bring meaning and purpose to their life. Um I think it's also really important to recognize that particularly when a person is actively dying, we know in those advanced stages of dementia, the ability to speak, the ability to swallow, the ability to stay awake for more than five minutes are very challenging. And those fundamental senses, the ability to appreciate a comforting smell, um, some people prefer a warm touch, some people prefer music, some people enjoy art, some people just enjoy the conversation in the room around them. Um they're still very satisfying to the person and provide comfort. Um so it can sometimes seem a bit trite when we tell people that you don't need all the bells and whistles of hospital to provide good palliative care. Sometimes good palliative care, in particular in aged care, is just good care as someone transitions through natural death.

SPEAKER_00 8:21

Well, this um this makes me want to ask you a question. Um, as a support worker, um, what can I do to support not just the person living with dementia, but also their families in terms of making this less stressful for the person living with dementia and also their family member. What can I do?

SPEAKER_01 8:37

Families that have had um what I think would be a good death in aged care story always say that it was when the care staff truly knew them and walked with them through the journey. So it's you're the eyes and ears to a lot of these residents. You're there every day. So not just with family, but reporting changes to RN's and to ENS and escalating it and actually getting that level of attention of this person may be deteriorating. Are we providing them the best comfort that we can at this point in their life? Um, the next would very much be really listening when you ask someone how they are. So we all make small talk to family members when they're coming through our facility and we all say, How are you going? Noticing both subtle things, noticing a family member more stressed with their relative, noticing a family member not coming as often, um, talking to them and hearing them kind of unpack the week because it's been so overwhelming. Yeah. That may be a family member who is also taking on a large burden outside of the facility and then coming to see their relative. Yeah. And their ability to take on new information from any healthcare worker is going to be very difficult until those kind of immediate issues are addressed.

SPEAKER_00 9:52

Yeah. And for someone who has questions about, let's say, pilot care in terms of uh dementia, in in the context of dementia or are looking for support, or who can they connect with, who can they contact?

SPEAKER_01 10:02

In the context of someone living with dementia, it's quite a unique journey. Yeah. And often if people would ask us because they need psychosocial support, so if it's a family member who needs someone to talk to, I'd recommend uh Dementia Australia or the National Hotline.

SPEAKER_00 10:16

Right.

SPEAKER_01 10:16

I think being able to reach out to peers can be very supportive at that point. If someone's worried about clinical symptoms, uh they can contact uh a local advice service or the palliative care service that's supporting that facility.

SPEAKER_02 10:30

Yeah.

SPEAKER_01 10:31

Um for general questions from the public, if anyone just wants to know more, there's a palliative care peak body in every stage. Okay. So here in Victoria, Palliative Care Victoria is the peak body. Yeah. Um, and we'll often receive questions from the community asking general questions about palliative care, access to services. Um, sometimes we'll get curly ones about clin uh clinical care, and often we'll just help them navigate who the best person to talk to will be. And there's always plenty on the internet.

SPEAKER_00 10:58

Yeah, that's true. And uh anyone can contact if they have questions. It doesn't have to be a family member. Anyone who's got the interest and are willing to support the person living with dementia and want to more, they can connect with the appropriate uh available helpline and organization and get the help and support that they need, right?

SPEAKER_01 11:16

Absolutely. And we definitely find that family is chosen family as well as your you know born family. So it can be whoever's important to a person.

SPEAKER_00 11:24

Yeah, yeah. And what's your final take on messages for our HK workforce, especially our support work?

SPEAKER_01 11:30

It's really important to realize that palliative care is not just about death, it's about the life before death. Uh, it's something that we're not comfortable talking about, but it is something that we can plan for if we're identifying what a person values, what a person wants, what gives their life meaning and happiness. Uh so that's a good place to start with all those conversations, not just what flowers do you need at the time. Um, I think it's also really important to remember, particularly for a person uh dying when they're living with dementia, is they were someone's, you know, brother, sister, mother, friend, family member. They took the same comfort and joy from, you know, walking in the garden, from nice music, from scented hand creams that the rest of us would in the world. And though they may not have the same ability to express their discomfort or their appreciation for things, those fundamental things are still there. And I think good care cannot be replaced. You can't get it in a hospital, you can't get through a drug or a machine. It's very much just being present and walking with them through that journey.

SPEAKER_00 12:36

Yep, I couldn't agree more with you on that. That's a beautiful way to put it all together. Thank you so much for sharing your knowledge and insight with us today, Tiffany. We really appreciate your time. Thank you. And before we go, here's something for you to think about. As we know, for many families, this phase is filled with uncertainty, emotional challenges, and the need for compassionate guidance. For care workers and nurses, it's about balancing dignity, comfort, and communication in every interaction. So, how do you think we can better support people with dementia and their families as their journey through the pilot of care test? Please do let us know. Thanks for listening to Voices in Room 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 co-worker other men 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.