Living well with dementia: A conversation with Lisa Dicker

In this episode, we’re joined by Lisa Dicker, General Manager at Bristol Dementia Action Alliance, for a powerful conversation about what it truly means to live well with dementia.

Rather than focusing solely on diagnosis and decline, Lisa shares how her work centres on helping people stay connected, supported, and engaged in their communities for as long as possible.

We explore the often-overlooked reality of anticipatory grief, the importance of early emotional support for families and carers, and how dementia-friendly communities can transform everyday life.

Lisa also reflects on the misconceptions that still exist around dementia, and why changing perceptions, alongside improving funding and access to support, remains vital for the future of care.

This is an episode about connection, dignity, and rethinking how we support people to live well at every stage of the dementia journey.

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Transcript

SPEAKER_01 0:04

Hello and welcome to Before You Go, the podcast from Westerly Group, produced in collaboration with Impika PR. This is the podcast where we have honest conversations with the people making a difference across the bereavement, end of life, and remembrance sector. We explore the stories behind the organizations, the challenges that they face, and the people who dedicate their lives to supporting others during some of life's most difficult moments. Today's guest, I have the pleasure of having Lisa Dicker, general manager of the Bristol Dementia Action Alliance. And whilst dementia is often thought of simply as memory loss, the reality is far more complex. It changes relationships, identities, and lives. And for many families, the grieving process begins long before a loved one dies. Today we'll be talking about those hidden experiences, the incredible work that Lisa and her team do to support people living with dementia and their families, and what greater understanding has never been more important. Lisa, thank you so much for joining us.

SPEAKER_00 0:55

Thank you for having me.

SPEAKER_01 0:56

Lisa, before we talk about uh the Bristol Dementia and Dementia Action Alliance, would you be able to tell us a little bit about yourself and how you came to work in dementia support?

SPEAKER_00 1:06

Yeah, so I will I was volunteering um in the community and I just saw what a difference volunteering does. And then I got a job as a community development worker for older people, and that was about identifying why older people get isolated, why they're not connecting with their communities, because loneliness and isolation are huge. And through that, I met Tony and Barbara Hall, who founded BDAA, as we're known, and it was the first time I had met somebody with dementia. At that point, Barbara was unable to communicate verbally, and she was in a wheelchair, but it was just something that was ignited in me, and I realized that I'd actually met lots of people with dementia, but I didn't know that's what was going on. Just something was spacks. I just wanted to make a difference. So I started volunteering for them. And how long have you been involved? Um about seven, eight years now. I was volunteering for about three years, and then I joined them part-time, just as like community engagement, and it's just carried on from there.

SPEAKER_01 2:11

So in that seven or eight year period, you will have you will have seen um a lot, uh, you will have experienced a lot of change with pandemics and and things like that. Uh and so I mean, for those who are listening who may have not had a personal experience of dementia, how would you explain what it really is and what perhaps it's perhaps how it's changed in the in the last few years?

SPEAKER_00 2:32

There's still a lot of stigma associated with dementia. We we often get asked the same questions. What is dementia? But what is the difference between dementia and Alzheimer's, for example? Um, dementia actually isn't a condition in itself, it is uh an umbrella term used to describe progressive diseases of the brain, and people still don't understand that. And that that is part of what BDA does, it's about educating people. Yeah, but has there been much change? I think there's a little bit more understanding, but there's still a long way to go.

SPEAKER_01 3:05

Yeah, absolutely. I think it's in effect, I suppose people often think about dementia as memory loss, but actually it's a lot more nuanced than that. And I suppose that probably is a good opportunity to ask you whilst in in many cases, and and from a personal experience, starts with things like forgetfulness and things like that. What are what are some of the less visible challenges that families experience, and maybe some of the less visible kind of characteristics of someone perhaps might be developing some form of dementia?

SPEAKER_00 3:33

Yeah, I mean everybody's different. That's a one thing. It's not just like you said, it's not just about memory loss. We've known people that don't have any memory issues, but they may have had personality changes, you may, they're cognitive, they may have had some cognitive decline. So doing everyday tasks may become more difficult. Just remembering how to do certain tasks, it may affect their mobility. There's lots and lots of different aspects of too much more the memory loss, and people need to understand that.

SPEAKER_01 4:03

Yeah. Um, so can you tell us a little bit about the BDAA and what services that they provide? Who do you support primarily?

SPEAKER_00 4:11

Yeah. Um, so as I said, Tony and Barbara Hall, when Barbara was diagnosed with dementia when she was 53, they wanted to do something to help others, and that started off by visiting local high streets and asking them what do you know about dementia? And it escalated from that. And we are about education, we provide dementia awareness sessions, we provide dementia training, but we also run six happy days cafes. Um, so our happy days cafes are people well know them as memory cafes. We don't sit there and talk about memories, people come along, anybody can come along, you don't need a diagnosis, and we have fun, we have fun. It is an opportunity for people to be in a space with other people that understand. There's no judgment, and we do lots of different things. We may have entertainers come in, we may do quizzes, may have crafted. It's different every time, and each cafe is very, very different depending on the community we have there. We also run Carers Social Groups called Carers Cuppa, and they are in a social place, they're not in a community centre or anything. We go to cafes just for people to come along and breathe, just to express they can say things that they can't necessarily say to their family or their friends. And no, they will not be judged for it because we get it, the people in the room get it. We we host the Bristol Dementia Awards every year, so that is a way of celebrating the amazing work that's going on across the city to improve the lives of people affected by dementia. We've literally just launched this year, so there's lots of different categories, and it's also to encourage people to do their bit, and it can be something small, it just makes a difference. You know, going in a shop and there's different signage, something that helps people navigate their way to a till just to help them be independent. What else do we do? We do so much, we do so much. We um, you know, we work from bottom up and we work from the top down. We work with people like Bristol Airport, First Bus. We'll work with local community groups, just getting the message across about how you can make a difference.

SPEAKER_01 6:24

It sounds like there's a lot of of opportunity and a lot of of touch points. And I suppose people would primarily think about the person affected. But even in there, you've spoken about businesses who, like you say, you said, Oh, I never met someone with dementia, but actually, when you realize that you'd met someone with dementia, you had met lots of people with dementia. So I suppose when you say things there like airport, people that are traveling, buses where people are utilizing the transport, being able to spot signs and being able to help and support just really helps build that community. Um in anticipation, I I would assume that the large majority of people that you help are probably those that are caring for people with dementia, and what sort of support functions do you have for people beyond beyond the socials? Do you have uh things like literature and training and bits and pieces like that? Um about that and also about these care awards, what do they look like?

SPEAKER_00 7:15

Yeah, so we actually we've just had one, we it's workshops, it's just they're social groups, we have a lovely time, but it's actually providing training and tools on managing that journey for for carers, families, friends, anybody, but also as well as our groups and that. So we launched last year our Happy Days Hub. So we have our ambition house in Lawrence Western on Mondays and Fridays where anybody can come in. People affected by dementia, it's actually the wider community, and we provide support, advice, a chat, and a cup of tea. There's always cake, we've got to have cake, but within that hub, we run an over 60s lunch club, and that's for anybody, anybody. It's about getting people out, it's about getting a connection, which is one of those risks associated with developing dementia. So we want people connecting, we want them active, we want them learning, we want them to have a purpose. So we run the lunch club, we run with AGUK Bristol, we have Tai Chi for over 50s, which is really popular and it's about movement. And we always have movement in our in our classes as well because of the risk of falls. But we are there and we can signpost, we can advocate for some people with their GPs or local services. We'll do anything, to be honest with you, that we can. Because everybody is very, very unique and very individual, as we know.

SPEAKER_01 8:41

Absolutely. Everyone's journey with with dementia and bereavement is very is very personal. I think dementia creates a different experience of grief compared with with many other illnesses and and and is that and I know that before we started talking, I was I was saying a little bit about my own personal kind of journey with with dementia for my my dear nanny Curie, who we we lost a short time ago, um, and actually had had experience um Alzheimer's for a number of years, and I felt personally like I like I lost her twice. My lost I lost Nanny Curie and then I lost her her as my physical nanny, like I said, a short time ago. How do you uh how do you help and support families and carers who are losing someone before they've they've physically gone?

SPEAKER_00 9:27

Yeah, it's actually the person that's living with dementia as well that it's important to understand and give them the opportunity to talk because they can see that they're losing their selves, and that is a grieving process. It's a grieving process for what future that they may have imagined, that they may have had planned. It's grieving for the things that you can't do anymore, and that's for the carer and the person living with dementia. You know, you you go from being married or a daughter and father or daughter and mother, and then you're a carer, and that whole relationship changes. So there's grief around that as well. There's grief around just not having your daily life the way you imagined it to be, and it's a long process, it's so different to having being told that you have, you know, a terminal illness that we can maybe give you some treatment, and there's lots of different support and organizations around. It can be a really, really long journey. Barbara had dementia for 22 years, but that's also something else we try and get across. When you get a diagnosis, it's not the end of your life. You know, it might change, you may have to do things differently, but you can still live your life, you can still learn new things, you can still have fun, and that's for the carers as well. Um, but it's difficult, you know, there's a lot of emotion involved, but we we're there and they they can just let it all out, you know, and talk to us. We don't have the answers, but just sometimes being able to talk about it helps.

SPEAKER_01 10:52

One one thing that we we try to do a lot of as Westerly Group is support domiciliary carers and and and care home workers and things like that, with understanding what the cremation process looks like and what a funeral service looks like. So in many locations within the country, we work with local funeral directors and we work with obviously us as the as the crematorial operator to try and help and support because it is a conversation that I you know I again I know from experience comes up a lot is what will happen to me when I when I die? And that's not just within dementia, that's within general care as well. Um, and I mean I suppose the question I have for you, or Matt, is beyond that, how can how can we as bereavement professionals help and support families that might be going through an anticipatory grief, I guess, in the sense of they know that there will be that time coming. How can we help them with it now?

SPEAKER_00 11:41

I think from experience there comes a point, it's avoided, you know, it's avoided understandably, but you have to have those practical conversations. And I think it it's important to actually say and have have that opportunity with that person that has dementia. So sooner you do that, that you know, we always encourage plan, plan ahead now, while that person has capacity to be involved in that, you know. I mean, luckily now a lot of people do have funeral plans, don't they? And they sort of have an idea of what they want. It doesn't always work out, but always plan ahead. That is always one of the things, you know. Have you got a lasting power of attorney? Have you got your funeral planned? You know, it's it's just really important to have that in place.

SPEAKER_01 12:24

Yeah, we we talk about it a lot on the podcast about the importance of talking and making sure that that you know what we may find is an uncomfortable conversation in the long term can bring clarity um in a really difficult and vulnerable moment for for families. And uh it it's always interesting to see across the landscape in whatever conversation and topic we have, yeah, unprompted. It always comes around about planning, talking, and and obviously in a in a very unique situation that if you have a loved one or a family or member or a friend who's is living with dementia, that actually there is a there is a point in time where you go, let's talk about it now while whilst whilst we can.

SPEAKER_00 13:04

Yeah.

SPEAKER_01 13:05

And I guess the question off the back of that is does it happen enough? Do you must see good good examples of it and you must see bad examples of it?

SPEAKER_00 13:13

Yeah, I mean like I said, there are people that plan ahead now, which I think is great. You know, before we wouldn't even talk about it, wait until the last minute, how are we gonna find the money? Where's this happening? But I think that's happening a lot more. People are planning ahead. But I think it's maybe for the wrong reasons. I think it's for my finances, you know, let's budget ahead of time without actually thinking of the details, you know, what's going to happen throughout that process. But you know, some people do have all of that in place, but there's a time, there's the right time. You have to pick that moment to say, have you thought about this? Have you had a conversation about this? Because it's really important and everybody's different.

SPEAKER_01 13:51

Completely agree with you, Lisa. You mentioned in our kind of before we started about uh perceptions and funding as being two of the biggest challenges.

SPEAKER_00 14:00

Can you tell us a little bit more about that? No, the voluntary sector, charity sector us, we're we're having to do more and more. The need is greater, but the funding isn't available. So we do get some donations from individuals that come along. We have some great people fundraising for us, but it's always a challenge. Always a challenge. But a lot of charities are in the same place. But the NHS are pushing more and more towards the voluntary sector to provide these services, but there's no funding to go with it. I don't know whether that's going to improve, but we always find a way. We've had some challenging months over the last year, but we we've managed to rally through, and people, like I said, have have fundraised for us, which is which has been fantastic.

SPEAKER_01 14:46

Why is the need changing, but then subsequently the funding is not there to support those changing needs?

SPEAKER_00 14:52

That's the big question. That is the big question. Dementia is on the increase. There's a variety of reasons for that. We're living longer, so your risk increases as you get older. We're not living as healthily as we used to, and there are modifiable risks that that you can look at and you can try to improve. One of those is hearing loss, and that is part of what we do as well. We educate people about prevention's a really strong word. We don't use the word prevention because you could do everything right and still get dementia, but you can certainly try and reduce your risk. And the amount of people that don't get the hearing checks or they won't wear their hearing aids, the conversations we have is like we're stuck at home in a drawer or I don't like wearing it, or it makes me feel old. But actually, if you say to them, Do you realise you could be damaged damaging your brain? The response is I had a great and had an LED, I was at an event and I was told to show she's like, No, I can't stand it, won't wear it. And that's me. She went back, she went off. She came back, she went, I'm wearing it, all right? There you go. So we've just launched our hear right, think right campaign, so we can get those conversations going around that. But is it, you know, it's they say an environment is a big issue, you know, that that contributes towards it. The funding, I just think dementia is it's still not being treated as urgent as it should be. It's the number one killer in the UK. So why is it not being treated as that? I believe the numbers are in every hospital bed, there is four people with dementia in that bed. So we have we have to do something for that.

SPEAKER_01 16:23

I I I apologize it was a loaded question. I appreciate probably if you had the the concrete answer, you probably would be in and around somewhere around the around government. But I'm trying not to get too political. Appreciate it. It is an interesting topic because you know, again the the pressure that it subsequently becomes on on care, the care system, I suppose, in general as well, naturally is needs to change, you know, it brings more pressure, the expectation on people is greater and all those sorts of things. So yeah, I I can I can see why that'd be a challenge. And I I personally didn't know about the the about hearing loss and how it could be connected. So your your hear bright, think bright initiative seems really timely and a a really good thing to a really good thing to do. Yeah to give people that awareness of something because actually maybe a little change might be able to to have a really big impact on on them for the long term. So thank you very much for that. No, you won't how do you see I suppose like looking forward, how do you see dementia care changing over the next five to ten years? If you're saying the needs are changing, how do you anticipate that the care will change along alongside it?

SPEAKER_00 17:33

Um I I think dementia training should become mandatory. At the moment it's not. So you have uh you know, carers that might not necessarily understand dementia as well as they should be, because that makes such a difference to how you care for somebody with dementia and their families. That should come in place. I really hope it does, and that would actually hopefully manage to keep people at home for longer rather than needing to go into full-time care or needing for hospital stay. There's a lot of burnout with carers just because they can't cope with that person at home, which is why we try to give them some understanding of what might happen, what symptoms you might see, what can you do to help that situation, but also how to look after themselves. But that is the biggest thing. We just need more understanding, we need more training, we need quicker diagnosis because it can take two years to get a diagnosis, by which time they can't you can't access the support you need or the financial benefits that you could be receiving, medications that could be helping with symptoms. It has to be improved.

SPEAKER_01 18:41

Thank you very much. Um before we go into the quickfire round, the the the last question that I have, I suppose, really is if every listener took away one message from today, what would you want that to be?

SPEAKER_00 18:51

Find out more. People are really fearful of meeting people with dementia. We we often find volunteers are quite nervous when they first meet people. It's it's still a person. Don't just see somebody as dementia, they're still them. And also look up our hearte, think bright campaign. Look after your hearing. If you've got any issues about your hearing, go and get it checked. If you're meant to wear hearing aids, wear them, protect yourself, protect your hearing.

SPEAKER_01 19:19

I completely agree. The hear the hear right um hear right think bright uh campaign seems very powerful. We'll certainly share more information on it when we when this podcast goes out soon. Um we're gonna finish with a with a quick fire round. Very three or four questions. First thing that comes to your mind just as we as we close out. So, what's one misconception about dementia that you'd love to erase forever?

SPEAKER_00 19:40

That there are a lot of research going around Alzheimer's, but people don't know there are more than 200 types of dementia. It's not going away anytime soon. One thing everyone can do to become more dementia-friendly um educate yourself online, there's lots of resources, you can get in touch with us, and we can provide a a workshop for community groups, charities, etc. It's free. So we come along and give you that.

SPEAKER_01 20:08

Quality that every great carer has.

SPEAKER_00 20:11

Patience.

SPEAKER_01 20:12

And a quality every bereavement professional should have. Patience. What's the most rewarding part of your role?

SPEAKER_00 20:18

Seeing somebody that is not engaging, that is not involved. And if you just get that person, you get their trigger conversation, you play music, whatever it might be, and you see that person light up. It gives you goosebumps every time. Complete the sentence.

SPEAKER_01 20:34

Living well with dementia means being you, whatever is you. Finally, what does before you go mean to you?

SPEAKER_00 20:42

It means being honest and it means having those conversations.

SPEAKER_01 20:46

Lisa, thank you so much for joining us on Before You Go. Have you got any social media or websites or anyone that where people can find a little bit more information about you?

SPEAKER_00 20:55

Yeah, so you can find our website, Bristol Dementia Action Alliance, and we also have a Facebook page under that title. We've also got two other Facebook pages, which are Happy Days Hub, which is where we have all of our different activities, and we also have our Happy Days Memory Cafes, where you can find out about all those.

SPEAKER_01 21:15

Thank you. Today's conversation has been a powerful reminder that whilst dementia changes lives in profound ways, compassion, understanding, and community can make an enormous difference to the people living with it and to those who care for them. Lisa has signposted you to a number of great places where you can find out more information and would absolutely implore you to do so. And we'll put all of the relevant links uh in the description below as well. Thank you for listening to Before You Go, the podcast on Westerly Group, producing collaboration within Pyker PR. If you enjoyed today's episode, please subscribe, leave us a review, and share it with someone who you think will enjoy the conversation. And until next time, thanks for listening and take care. Bye bye.