Talking Topaz: An international knowledge exchange

Colm Cunningham: 0:12

Hello again and welcome to The Dementia Podcast. I'm your host Colm Cunningham, and you join us in the week of World Alzheimer's Day. We recognize on such an important day that Together we are stronger as we support people with dementia. And "Stronger Together" is what we're calling the launch of a partnership between Topaz in the Netherlands and HammondCare and its Dementia Centre. So we're going to join a webinar and unusually I'm going to have to take my seat and join the conversation. It's going to be hosted by my colleague, the head of dementia center services Marie Alford So Marie, who's joining us on this webinar?

Marie Alford: 0:51

I'm really excited that we have Wilco Achterberg, he's a professor of institutional care and elderly medicine from Leiden University. Lia de Jongh, the CEO of Topaz homes in the Netherlands, and our colleague, Professor Sue Kurrle. She's a geriatrician and carer. But people here in Australia might recognize her from the ABCs old people's home for four year olds.

Colm Cunningham: 1:12

And I know that in the UK, they've had a program like that, which is really reflecting the important issue of intergenerational care.

Marie Alford: 1:20

And we're learning so much more about that and through touches on the fact that the next ABC program will focus on teenagers.

Colm Cunningham: 1:26

Wow. And I reckon there's quite a few subjects are going to come out of this webinar, I think we'll be having more conversations on the dementia podcast,

Marie Alford: 1:33

we definitely will. So we'll be having lots more chats about intergenerational care, and a whole range of other topics. So watch this space.

Colm Cunningham: 1:40

Now, we've had the Consul General, for the Netherlands introduce the webinar, and we'll put the link on for that so that everybody can watch the full thing. But we're gonna join the conversation, just as you ask us how did this relationship and partnership start. So I'll take my seat and let you take the reins.

Marie Alford: 1:58

Fantastic. Let's kick off.

Susan Kurrle: 2:00

I'll start with code because I went on sabbatical to Leiden to the University of Leiden in 2010. And I've been going back each year till COVID hit last year, to teach but particularly to learn, and it was on one of those visits in about 2012. I think it was that I met Wilco and learn what he did. And the unbelievably good idea of elderly care physicians with training in multiple areas. He also introduced me to Topaz. And I guess I recognized immediately the similarities with HammondCare, the the philosophy of looking after people, other people didn't want to look after the really difficult ones, the different approach to care, the innovation, the coming out of left field, but let's try this idea. And just their fresh way of I guess, of looking at things. And I could see areas that we could really learn from as well. And so I kind of joined them up, I think you'd say Wilco in that we develop the relationship Wilco and Lia came and visited Australia and spent time here. And now we're actually formalizing that relationship. We've been engaged for a long time. Now we're getting married.

Wilco Achterberg: 3:24

Yeah, yeah, that's great, it's about 10 years ago, when we met, and within a few minutes, we understood each other, we talked about the same issues. And it seemed like we had the same thoughts, and the same framework was important for people with dementia. And you don't meet people who are based in both research and university and in care process, and think and have this this, this thought and, and you were always driven by the needs of people with dementia and not by your academic achievements. And so really, although it's, it's very, the distance is very long. The distance in philosophy was was very short, we said earlier, and I said, Well, we should do more with that we should exchange knowledge because we think that we can learn from HammondCare. And I also think we also think that HammondCare can learn from us. So we are very excited for this, this engagement or this marriage.

Marie Alford: 4:31

I'm very happy to be officiating at the marriage today. So welcome, everyone. And now I'd like to talk with Lia a little bit more about your motto at Topaz. So the entire life counts. What does it mean? And can you give us an example of what that means in practice?

Lia de Jongh: 4:46

Yes, of course. Your entire life counts approach is characterized by a very personal focus. One of the programs that we have been working on for the last few years is called from regulation to relations. We try very hard to focus on the relationship based care. Before we look at the rules and regulations, we look at the effect or the quality of life. Residents all want to be seen as a person and not as a patient. They don't come to be nursed, they come to live with us. So what are the personal needs of the people that live in our homes. And what we experienced is in our way of caregiving is that reciprocity is very important. Residents can mean something for their formal caregivers, because it's a two way process. All parties involved, benefit from a good relationship. And we need to pass we always talk about the importance of the care triangle, the resident, the family, and the caregiver himself.

Marie Alford: 5:51

I really think that statement around regulations to relationships resonates for us here in Australia. So I know that our Australian listeners will be very interested to learn more about what that means in the Netherlands over the coming months. Colm, picking up on that last statement of Lia, can you talk a little bit more about the model of care here at HammondCare, and how our cottage design model fits into all of that?

Colm Cunningham: 6:16

Well, I think Lia underpinned by talking, it's all about reciprocity. It's all about the relationships. I often say that in 1995, when HammondCare opened The Meadows, one of its first cottage facilities, it was a heart led decision, it was looking at what is driving the challenges that people with dementia are facing, and how do we compensate for that? How do we ensure that they can see and sense in small domestic familiar environments. It's interesting that Sue's work in the cognitive decline Partnership Center on their important research has demonstrated that through that small domestic model, and I'm talking about people in groups of maybe 8 to 10 people, or 12 eople living in a group, tha we make decisions easier, and we ensure that the care mod l is around what that person nee s. So for example, it isn't alw ys net led by a nurse, you hav the same amount of hours of a urse. But we have empowered are workers who are leading hose relationships, those elationships with families and riends. But also we are mpowering the person and taking xtraneous issues out of the ay. So for example, the doors o the gardens are not locked. he deliveries of food or aundry are in back of house corridors that do not distract people because they are unnecessary. While of course having those things that can't a kitchen that's working and rea and where we're cookin together, and where laundry ca be done. But making sure that' managed in a way that empower the person, and that we are no worried about the balance o care in the facility. So w match people and the cottag they live in using a particula tool to ensure that th complexity of their need matches the cottage they liv in. In terms of the evidence, always say that 1995 We led by what we thought was right. Sue's work has shown lower admissions to hospital lower use of medicat on and a lot better outcomes for people in those small do estic models. And interest ngly, there's a question now n the time that we find oursel es in is whether there als have helpful in the COVID era

Marie Alford: 8:23

Thanks Colm, we know that the environment has such a big impact on the experience and quality of life for people living with dementia. We've talked a little bit about the dementia cottage model here at Hammondcare. At topaz, it's called small scale homes. Lia, how has the Netherlands approach design in environments for older people,

Lia de Jongh: 8:44

when when quality of life is your ambition, you need to be a bit radical to achieve it. So we try to make room for new ideas. So we have changed the layout of our homes. So we achieve a more family style home in our newly developed homes a daily host functions a bit like an in house mother, she cooks in the in the open plan kitchen, she creates a good atmosphere during dinner, plays board games or gives a helping hand to the nurses. And we have specific thoughts about atmosphere and light and an era enriched environment that creates no negative triggers. Also our co workers flourish in a work environment where they can make their own decisions. And we try and we really think that the attrition rate in small scale living is better than in regular, regular and nursing homes.

Marie Alford: 9:48

Sue I'm wondering how do you think environment and the model of care influences your mother's experience in an aged care home?

Susan Kurrle: 9:56

I think the cottage model of care as Colm as And Lia have described it is probably as close to home as possible. And Lia said, we're not there to provide nursing, we're there to provide a home. But for my mum, when she first moved, when her dementia wasn't as severe, she was helping with preparing meals, she was peeling potatoes chopping up pumpkin. She was hanging out washing, she was bringing it in, she was folding it, she was arranging flowers. She was doing all the things she used to love doing at home. And her needs have increased. But she still sits there in the middle of the home, and everything happens around her. And she can still take it in and be part of it. And the other thing is the staff Lia mentioned the low turnover. Many of the staff that look after mum now were there when she moved there nearly three years ago. And honestly, I think they know her better than I do. And it is just amazing. And I love when I go in and I'm still allowed to go in because of our wonder wonderful Partners in Care program that we're going to talk about the smell of lunch, cooking is really terrific. It is so much like home.

Colm Cunningham: 11:10

And can I add to that there's some very interesting facts that are coming out in this conversation. Because we too find that in even in our more complex facilities, with people with significant behaviors, the attritional rate is lower. And that's consistent with what what our Dutch colleagues are telling us. So there's something here about empowering the staff in an environment that they can work effectively, that is reducing that attrition rate. And that is significant because for Sue, it means that that relationship is not only with seeing her mom, it's with people she trusts and trust is so central to what we're all talking about

Marie Alford: 11:49

moving on to something that's on the minds of us all right now, the current pandemic. Wilco, can you tell us a bit more about your research project "Isolate", which is about the impact of COVID on people living with dementia.

Wilco Achterberg: 12:02

Thank you. Well, we interviewed both formal and informal caregivers for persons with dementia. And we did this with Mandy Visser who we worked at the University of Technology in Sydney, but came to Leiden University Medical Center and to pass Topaz Oh, she's a little bit you knows the best of both worlds. But she interviewed those the caregivers in the community and in the nursing homes in the COVID period, of course, and we found that especially persons with mild to moderate dementia in the institution suffered and showed more agitation in this period. For more advanced dementia, this was not so clear. And often they also seemed more comfortable in a situation with less people and less commotion, less hassles around them. So that's also something we can learn about that having all kinds of visitors is not for everybody so good. We looked at the nurses, the nurse often felt very guilty because they could be with the resident and family couldn't also in the last stages of life. And, and they were also sometimes threatened when they came out of the institutions, I was very, very tough period for them. And next to the workload and being sick. Family was really happy with alternative communication methods, such as video calling. But we also found that people with dementia often did not understand why their son was on television. And that made them anxious or restless. So, so we learned a lot on what kinds of things are important that you should probably be very careful when using these kind of methods for people with especially more advanced dementia. So we learned we learned a lot and also for their post COVID period.

Marie Alford: 14:03

Thank you Wilco. Colm, Sue touched on HammondCare's, partnering and care project here at HammondCare. Can you talk us through what that program is about and the impact it's had on isolation in the care homes here at HammondCare. In Australia,

Colm Cunningham: 14:18

like our Dutch colleagues, we found it very distressing the isolation that potentially people were facing. But we also touched on earlier in Lia's comment about the fact that you must go what do you want the outcome to be? And then what does the regulation say we've got a bit of a regular quote here about know the regulation better than the regulators, because often we are driven by what we think the regulation says. And in that way, we went hang about we don't want families to be separated, but we can't have everybody coming in. What What if we looked at the volunteer model where we are still allowed to let volunteers in as long as they have done the necessary training in hand washing and all of the important things that we know are so critical during a time like this And we said, let's do that let's accredit these family members as volunteers specifically for their family member, and we call that partnering in care.

Marie Alford: 15:10

Sue you talked a bit about the notion of isolation. And Lia, Wilco and Colm all talked about loneliness in aged care. We know this is not something that just happens during a pandemic. We know that people in aged care can feel anxious and lonely, because there's a lack of stimulation of visitors and engagement. Talk us through some of the work in the intergenerational space that you've been involved in.

Susan Kurrle: 15:33

Yeah, so the concept of intergenerational care. So bringing older people and young people, you know, babies, children, infants, children together is not new. And the benefits from it are known. But it's how you do it, so that both groups benefit. And we've certainly done work, both in residential care, where we brought children into an aged care facility, and we watched the depression scales change completely, their quality of life went from two to 10. There, our mobility improved, so that they were running egg and spoon races with their walking frames, it was quite amazing to see the benefits that came when we took children into residential care. But because most people certainly in Australia and the same in the Netherlands, most older people live in the community. So the second, I guess, series that we looked at was having a preschool and bringing older people into the preschool older people who were living alone, who were lonely, who were isolated. And again, we saw the difference. We saw it in frailty, we measured that we saw it in depression, which we mentioned, measured quality of life, and you can eyeball it, you could see it because it was on TV, the incredible improvement. And it wasn't just for the time of the program, it has continued. And despite COVID Those older people are still getting out, because they've suddenly discovered they can do it. Again, they've got their confidence back,

Marie Alford: 17:12

I think we'll see a lot more conversation happening in this partnership around the intergenerational aspects of care, but also looking at isolation, and the impact of current pandemics. But one of the other things that came up for both of our organizations, in those early discussions, was our shared knowledge in two particular areas that interested both our workforce but also the broader sector. So for Topaz, in Australia here, we're really interested in learning more about the work that you do in the field of Huntington's and care environments in which it's delivered. So Lia, would you like to talk us through a bit of that work?

Lia de Jongh: 17:51

Yes, yes. So past care for patients with Huntington's Disease now for more than 30 years, and in these years, we have been building up a lot of experience expertize we care for those people, the care for those people, it's very complex, because they are often younger than the regular patients and residents. And they have a combination of physical, emotional, social, and psychoactive needs. So we work together with neurologist side, try this, and we are able to take really good care of them. And at the moment, we are the largest long term care data center in the world. And we have about 80. That's at over 100 MB ambulatory patients. And we also develop a cooperation with the Dutch and European faces organizations. And we are an important Europe European Knowledge Hub.

Marie Alford: 18:50

Thank you, Lia. Colm. HammondCare has led the Australian government funded dementia support Australia program for quite a few years now. It's delivered services to over 50,000 people since 2017. What are some of the key learnings from that program?

Colm Cunningham: 19:05

Well, I think one of the first things is the beauty of what the Australian government has done is join the program of sorts a national program, which is quite unusual from countries across the world. There's many examples of grid programs in different states and cities. But what we're able to do is actually bring together an incredible amount of data. That's telling us what people's needs are at different stages. So we support people in the community in residential care quite significantly. And when people are ready to transition out of hospital and we're working in 40 locations across Australia, including in our northern territories and with our indigenous communities, our First Nations people in Australia. Some of the things that come out will not surprise you because I've been part of these conversations which is know the person first and foremost, often we will go in and we are dealing with the fact that there is a barrier between the staff and the person because they don't understand who they are. And what drives them. What has changed since the program started is that we're now looking much more at the areas of delineation in the program. So how do we support more people at home? How do we support people in prisons? How do we support the police, all of those things are becoming more to the fore as we started to understand the data better. And significantly, that separation between responsive behaviors that are actually applied to some of the situations we've just described, and the organic progression of the condition, and the right environment for those people who may be a smaller group of people, but need a lot more support. And if we don't support them, well, we end up actually using our resources poorly because they unfortunately will be bounced around the system. And they suffer, their family suffer and the health system suffer. So a new addition to that program is a thinking around specialised dementia care programs. There's lots more I could say about it but dementia.com.au you can find out a lot more about dementia support Australia,

Marie Alford: 21:07

Sue, the Australian government has introduced the specialist Dementia Care Program here in Australia. Talk us through what led to the development of this program. And what we are hoping to see changes in the aged care sector. As a result of this.

Susan Kurrle: 21:21

As a clinician who visits residential care to look at people with the really severe behaviors, and psychological symptoms of dementia, I am very thankful that the government is looking at developing these specialist dementia care units, which are basically units of eight to 10 beds set in an established residential care facility. So they sit as part of it. And they're for those people that can't be managed anywhere else we know and our experience with the couple that we've had over the years, I'll do almost anything to get one of my more difficult people in, because I know it might take six months, it might take eight months, might take 10 months, but on the whole, those behaviors can be managed. And that person can then go back to a more normal way of living

Marie Alford: 22:17

Thanks Sue. One of the topics which Topaz and Hammondcare will be working on together is professional development Lia and Wilco, can you talk about the education system in the Netherlands? And what is so important about what you do?

Lia de Jongh: 22:30

Yes, for example, our nurses they have when they start a four year education before they have their diploma. And that it's not only the level of nursing, it's also for the care givers, the helpers. We think that having a good education and knowing what it means to have dementia is essential to be a good care, caregiver. Otherwise, you get so much complication because they don't understand why people are behaving the way they are behaving

Marie Alford: 23:07

Seems we have a lot to talk about in the future, around some of those intractable issues that we're facing in care, and what our responses might be. So I'm really looking forward to more discussion about complex Dementia Care, Huntington's disease, and our professional development programs in the future. But a final question to wrap up the session today is around palliative care. So some people think that palliative care is only available or should only be available in a hospice or hospital setting. So Wilco and Lia, want to talk us through some of the ways in the Netherlands, that you're approaching palliative care?

Lia de Jongh: 23:45

Well, in the in the Netherlands, most people die at home. But for people with dementia, that's it's very, it's more complicated. And fortunately, almost no person with dementia die in the hospital. So most die in our nursing homes, and we have a lot to improve. But I think we provide good medical, nursing and spiritual care for them. And we spend a lot of energy in training in education,

Colm Cunningham: 24:13

I think it's a really good example of an area that we are going to really benefit from the learnings from each other. the bringing together of expertise and palliative care and dementia care is going to be so crucial to support people at home because unfortunately, our numbers are going to be even lower. And I'm sure Sue's gonna I'm sure chip in on the fact that we do not support enough people are home in general when they're palliative, but even less so when people have dementia.

Marie Alford: 24:38

Recently we wrapped up our Royal Commission into aged care here in Australia. There was a recommendation around dementia and palliative care training into aged care. So what are your thoughts on this and how's it going to inform our workforce here in Australia,

Susan Kurrle: 24:52

the elderly care physician model in the Netherlands? It's the one thing I want to see before I die is that we We get that model into Australia, the model of physicians trained in geriatric medicine, rehab medicine, because let's face it, we can get a lot of these people better. Palliative care, we've said it's so important and aged care, psychiatry. It is that important four specialties.

Colm Cunningham: 25:18

I think this partnership is all about learning. And I think it's also about the humility that we all want to bring to this because we will make mistakes. One of the things that I've never been able to learn how to teach is passion. But one of the great things about this partnership is we have it in bucket loads. So we finished that conversation, Marie with passion, the importance for passion and oversee that webinar. There was plenty of it.

Marie Alford: 25:47

There definitely was and I think you know, the key thing here is, think about all those topics we covered and the great webinars we'll be launching in the future. Sure there'll be some more podcasts too

Colm Cunningham: 25:56

Absolutely. As always, it's a pleasure to have you on the dementia podcast. So Marie. Thank you for keeping us on check and getting us through so many discussions in that webinar slash podcast. It's great to have you as always listening. Please do give us your thoughts and ideas. Email us on hello@dementiacentre.com Bye for now.