Staying connected
How to stay social and mobile: relationships, communicating, staying in touch and going places.
Transcript
[Beginning of recorded material]
Trish: My name is Trish, and I've been diagnosed with Alzheimer's. It came as a shock to me when I was first diagnosed but
I've come to terms with it now, and I look at it as an opportunity rather than something bad. And even the dementia is a
blessing because of the friends that I have made, the things I've learnt about myself, both good and bad.
[visual: Trish and her husband doing the crossword puzzle together]
Trish: I am very fortunate that I have a wonderful husband who's really supportive of me.
[visual: Picture of Trish’s children]
Trish: My children are absolutely wonderful. They took it really well when they found out I had Alzheimer's. They are very,
very supportive.
[visual: Picture of Trish’s grandchildren]
Trish: My grandchildren keep me very active. They’re on the go all the time. I love spending time with them. They don’t even think there’s anything wrong with me. They wouldn’t have a clue. I’m just Nana, so that’s wonderful to have somebody who’s just there.
[visual: Trish knitting]
Trish: I love knitting. I don't knit jumpers like I used to. No, none of that cable knit anymore, but I knit scarves for charity.
[visual: Trish chopping a tomato, preparing a salad]
Trish: I absolutely love cooking. I love to try different recipes. Before dementia, I used to just know it off by heart, but now, I
have recipes. And my sister who is a wonderful cook, she took all of my favourite recipes, and she cut them up and put them
into an album for me.
Trish: I always start the day with a really healthy breakfast. I love having cereal, and I add to it blueberries, cranberries, low
fat yoghourt – all the foods that will stimulate the brain.
I would like to say to people that Alzheimer's is not the end. There are many, many things that you can still do, and it's just that you have to persevere and look for them. And if, at first, you mess up a recipe, then try again. It's all about perseverance and trying new things and not just sticking with the old things. Be brave and have the confidence to give it a go, and if it doesn't work, it doesn't work. But it's better to have tried than not, because you don't know until you try.
[Title card: With special thanks to Trish and Rob.]
[Dementia Australia logo]
[Title card: National Dementia Hotline 1800 100 500. For language assistance call 131 450]
[Title card: Visit dementia.org.au]
[END of recorded material]
- Activities at Home
This session helps people looking after someone at home to plan engaging activities.
https://www.dementia.org.au/get-involved/events/activities-home - Dementia and family relationships
Dementia is a major disruption to your family life. Here’s how to talk to children about dementia, and advice for parents and partners in a caring role.
https://www.dementia.org.au/living-dementia/staying-connected/dementia-and-family-relationships - Activities for people with dementia
Stimulating activities help people living with dementia stay engaged and motivated. Here are some tips and ideas to make activities more enjoyable for everyone.
https://www.dementia.org.au/living-dementia/staying-connected/activities-people-dementia - Talking to someone with dementia
Tips and strategies to help you communicate with someone with dementia.
https://www.dementia.org.au/living-dementia/staying-connected/talking-someone-dementia - Driving and dementia
Dementia reduces your ability to drive safely. Learn the warning signs and your options if you need to stop driving.
https://www.dementia.org.au/living-dementia/staying-connected/driving-and-dementia - Discrimination and dementia
People living with dementia can often experience discrimination and stigma. Here’s what dementia discrimination can look like, and what you can do about it.
https://www.dementia.org.au/living-dementia/staying-connected/discrimination-and-dementia - Travelling with dementia
Travel with dementia becomes more complicated. But it doesn’t have to be impossible. The key is planning and preparation.
https://www.dementia.org.au/living-dementia/staying-connected/travelling-dementia - Visiting someone with dementia
Visiting a loved one with dementia can make a big difference to both of you. Here’s how to make the most of your time together.
https://www.dementia.org.au/living-dementia/staying-connected/visiting-someone-dementia - Special occasions
Special occasions are a time to celebrate and enjoy. Discover tips to help make special occasions easier and more enjoyable for someone with dementia.
https://www.dementia.org.au/living-dementia/staying-connected/special-occasions
Changes in behaviour and staying social with dementia
While we often think about the changes in the brain and their effects on thinking skills such as memory and problem solving, people are not often told about the significant impact of dementia on social functioning. In the video below, Associate Professor Michelle Kelly discusses how dementia impacts social skills and social engagement.
Transcript
[Title card: Changes in behaviour and staying social with Dementia. Dementia Australia.]
Michelle: Hello, my name's Michelle Kelly. I'm an associate professor in clinical psychology at the University of Newcastle. I've been working with people with dementia and with their families for the past 10 years or so, and a lot of my work is in the social changes that occur as part of dementia. So, I'm going to be talking today on dementia and changes in social behaviour, and I'm coming to you from Awabakal lands in Lake Macquarie and pay respects to Elders past, present, and emerging. This talk will cover some of the changes that we can see in our behaviour, and particularly our social behaviour - so how we interact with others that we can see with dementia, when and why we see these changes, how we can best support someone with a diagnosis of dementia to stay social, and where to get more support.
You're probably aware of some of these changes already. Some of the most commonly known about changes that come with dementia are changes in thinking skills, such as changes in memory, and judgement, and concentration. But what we also see quite commonly is changes in mood, social skills, and personality, and this can present as withdrawing from social situations, difficulties understanding their own and other people's emotions, difficulty with showing empathy, and difficulty with showing gratitude. We also see some of the other common changes, such as changes in self-care and changes in physical ability
So now, I'm going to talk a little bit about when and why do we see these changes. We know that everything we do, what we call "our behaviour" occurs in response to the things that we see, hear, touch, and smell in our surrounding environment, and changes in the brain that can occur with dementia can affect our ability to understand our surroundings. And being confused by things that happen in our environment can sometimes lead to unusual responses or unusual behaviour. And these changes can be quite confronting or challenging for an individual, but also for the people around them.
Each part of our brain is responsible for a different skill or ability, and we know that each of these are very important for all different things that we do in our everyday life. For example, our parietal lobe is responsible for working out where things are in the space around us. So, if I can see a coffee cup in front of me and I want to reach down and pick it up, knowing exactly where that is in my environmental space is important for being able to do that successfully. Our occipital lobe is important for processing visual information more broadly and this can be affected also. Our cerebellum is responsible for our balance and our coordination. Our temporal lobe is responsible for long-term memory, understanding sounds, and knowing what objects are. And the temporal lobe is quite often affected very early on in Alzheimer's disease, and that's why we see those changes in memory. And then we have our frontal lobe here at the front of our brain, which is responsible for things such as planning, organising, decision making, but importantly and relevant to this talk, it's important for our interpretation of emotional context, or things in our environment, or what we refer to as our "social skills".
So, what does it mean to be social? Socialising is a very complex task. We often take these skills for granted as we tend to learn them early in life, and mostly don't know that we are learning them at the time. So that means that it can be sometimes difficult to think about how we work around, if we do have some challenges in these areas. If we take a look at this fairly typical social scenario, this looks to me like friends having dinner. There are a number of different social skills that we need to be able to interact in this situation. First example is we need to be able to recognise where people fit in social situation, so that these people are our friends, when they turn up to the door, we need to be able to recognise them in the first instance. We also need to be able to pay attention to the different emotions that they're showing on their faces. So again, this is something we really take for granted, but to be able to see someone smiling and know that that means they're happy or engaged in our conversation is really important, but also, to be able to see if someone is sad, and therefore, adjust our response accordingly.
There are also some other nonverbal cues - so we have things like our body language. Are we sitting open or closed? Do we have our arms folded? All of those cues in our body give us clues as to how a person might be feeling, but can also give us a clue as to how we are feeling about the other person as well. We also need to be able to show empathy. Now, empathy is a skill that relies on some of these others as well, because to show empathy, we need to know or maybe understand a little about how others are feeling, to be able to respond in an empathic way. And we also need to know how we might normally react or respond in a certain social situation.
So, of course, we have lots of different what we call social situations or interactions. We have those that occur with friends such as a dinner party like this. We have those that occur when children are around, or those that occur in the workplace, and we often act quite differently in these different contexts. And so, it's important for us to know that we do respond differently in different contexts and apply that. As you can see, there are, just in this one short example many different skills that we can have trouble with, and difficulties with any of these skills can interfere with our social interactions. And we also know that changes in the brain that come with dementia can cause these changes in social skills. What might these look like in real life? I'll just break down some of those from the previous slide that I was talking about.
So, face recognition I talked about, this is a nonverbal cue. Emotion recognition is also a nonverbal cue, and body language. There's no language around any of these things, that also means that it gives us that opportunity that if a person with dementia does have some language processing problems, perhaps we can use some of these other nonverbal cues to convey how we are feeling, and also look for clues as to how they might be feeling. We then have those verbal cues - I mentioned a minute ago that tone of voice. In Australia, in particular, we use sarcasm quite a lot, so this is almost where we say one thing but mean the opposite. And it's reliant on tone of voice to pick up that the person's being sarcastic. But imagine if you can't pick up on that person being sarcastic, and you, essentially, are interpreting what they say as true as per the words, and you can see how that could lead to a lot of confusion and misunderstanding in a social interaction.
So, we have those verbal cues of not just what a person is saying if they're saying I'm unhappy or I'm frustrated, but also the tone of voice, and the use of that language such as sarcasm. And if we then layer in social norms, we might then see people doing and saying things in a particular social situation that's not considered appropriate or acceptable, so this might be things such as saying things in front of children that wouldn't normally be said in front of children. And this can just be caused by no longer understanding the context within which they are. So, some things to look out for if the person that you are caring for, your family member with dementia is seeming like they're no longer understanding and responding when you are feeling sad or frustrated, it might be because they can't actually interpret those cues that you are providing anymore.
It's never an intentional thing, it's rather a change in the brain just like we see those changes in memory that happen. Some of these changes in specific social skills, or the sorts of challenges we might see in everyday life might include interacting with groups, remembering the names of family and friends. Sometimes, if there's some discomfort around this, some awareness that this is happening, we can feel quite self-conscious and not want to interact as much, because we're worried we'll forget the names of our family and friends. It can affect our ability to hang on to old friends or relationships. It can affect our ability to make new friends. It can make it difficult to change our style of communication in different situations, and it can make it difficult for us knowing who to trust.
A common example I hear about is when people, you know, we get all sorts of people knocking at our doors these days trying to sell us things, and it's important that we know, I guess take into account who we can and can't trust, and who, maybe, we should be a little bit more aware of. And if we don't trust our ability to identify always those people who are familiar to us, and those people who are not familiar to us, we might not feel comfortable and confident in turning away someone at the door, if they shouldn't be there, or welcoming in family and friends. So, all of these changes can make it a little bit more challenging in what makes up our everyday lives.
So, we see changes in conversational skills, and this is very commonly reported by family, as well as that withdrawal from social situations. We might see changes in the ability to perform in social situations, these are actually utilising those social skills that I talked about earlier, that ability to recognise people we know, and recognise what facial expression they might be communicating to us. They might have insight or awareness of their problems. So, if they have insight and awareness into their problems, it often makes it more difficult for them to socialise because they might feel embarrassed, particularly if they're spending time with family, and they find that they're forgetting family members names, or not able to join in the conversation. They might think a little bit of, "What's the point of this? I just sit here, and I can't follow the conversation, so I might as well not be there." Sometimes, that insight and awareness can lead to withdrawal from social situations, which, like I said, is something that families very commonly report.
We also know that medications can change the way we interact with people - so, medications that might sedate a person slightly, or slow them down a little bit can also mean that their thinking skills can slow down, and that means their conversational skills can slow down. We can also see physical mobility problems getting in the way of socialising. So particularly, for example, if the family's meeting in the park for a picnic, then even physical mobility can get in the way of that social interaction, so just thinking through what sorts of situations might feel safer for the person with dementia, can often help increase their ability to stay involved with the family. We also know that depression can affect a person's, both their ability to socialise, but also, their willingness to socialise.
So, people with dementia who also experience depression, can withdraw from social situations because they're worried about being that sad person in the room, or they don't feel that they've got anything to talk about, because their sense of self-worth has been affected. Sometimes, that gentle encouragement, and trying to make that a rewarding situation can help the person with dementia still want to remain involved. Okay, so how can we best live with these changes in social behaviours? There are three different suggestions I'm going to work through. Firstly, making changes to the environment, supporting the person with dementia to respond differently, and changing the way that others respond to the person. So we can work on all three of these things, but what need to keep in mind is that with any changed behaviour, I guess, trying to change that can be difficult, and a lot of what we do is about trial and error, so it's trying one thing and if that doesn't work, not giving up but trying another thing. And maybe even trying that first thing again on a different day because we know that every day is different. So keeping in mind that this is not easy, and it does take even a little bit more, it requires a little bit more from close family and caregivers.
So firstly, making changes to the environment. The first one we can do here is removing triggers in the environment. We do tend to see, like I mentioned, some increase in that anxiety about going into social situations, maybe because of changes in what they see as their performance or ability to interact with others. So sometimes, something as simple as an invitation on the fridge to go to a party might be something that triggers off some changes in social behaviour, and particularly, some anxiety around going to that party. That invitation on the fridge might be something that triggers that conversation of when's that? Who's going to be there? Is so and so going to be there? How am I going to talk to everyone? Those sorts of questions that are driven by that worry to be able to perform in that social situation. So sometimes, just putting that invitation somewhere else so it's not in plain sight might be a way to, or an example of removing the trigger in the environment.
The other thing is to remove the person from the environment, and this is often a very difficult dilemma for families because we often want to keep the person with dementia, our family member, very much involved in all of the family gatherings. So you can see here, a big family gathering with lots of kids. I imagine this might be a noisy environment with lots of conversations happening, and lots of negotiations around the children eating their food and things like that. So, for a person with dementia, this is actually going to be a fairly overwhelming family dinner. It's worth thinking at what point is this style of family dinner still the best way to keep the person very much part of the family and keeping up to date with the family and in touch with the family.
Sometimes, it might be about thinking about smaller family gatherings with just maybe one of the children and their grandchildren, or your grandchildren, rather than having all the family there at once. And this really large family gathering, that will be very difficult for a person with dementia to manage and navigate all the conversations and all the social nuance that's happening there. So that's another thing to think about is is this the best place for us to have this gathering? And often, we find even older people without a diagnosis of dementia have difficulty in restaurants, of course, because all the loud noises around them. All of those competing noises are competing for our attention, which means if we are then trying to have a conversation with someone sitting next to us, that's really hard, because there's lots of other things that are competing for our attention. And as we know, with dementia comes changes in our ability to focus in and pay attention on one thing. So sometimes, we need to think about is this the right environment for us to maintain these social interactions with family and friends? Or is there a quieter a place, an easily accessible place with just a small number of people?
The next one to think about is to support the person with dementia to respond differently. So if we're in a group situation, think about who might be best to sit next to the person with dementia to assist them with conversation. And then, also in a group situation, actively invite the person with dementia into the conversation with some prompts about a familiar topic. So for example, "Mum, why don't you tell the kids about where we used to go camping?" And then, if you notice that things are getting off topic, or the person with dementia is sort of losing their track a little bit, then providing some gentle prompts or redirections. So, jumping into the conversation saying, "Mum used to take us swimming in the dam near the campsite when we were younger." And just re-prompting something that's still within that topic, and that will help not only the person they're supporting, but also the family stay involved in that conversation, which is really important.
The other thing we can do is change the ways others respond, so providing some information to our other family members and our close friends about what might help in terms of having a good social interaction. So encourage family members and others to give the person with dementia more time to respond if they've asked a question. We might also encourage family only to have one conversation happening at the time, at a dinner table. When we have all those multiple conversations happening, again, it's difficult for the person with dementia to focus in on any one of those conversations, therefore, they tend to, again, withdraw and sit back. And prompting others on topics that would be suitable to talk about.
We know the earlier memories are often the strongest, especially in those who have a diagnosed of Alzheimer's disease, for example. And the reminiscence type questions are often best. So, prompting children in the family to say "What was at school like when you went?", or "tell me about Bertie, your first horse?" And then, maybe, even providing a photo as a bit of a prompt to help with that conversation. So sometimes, it's about changing the environment. Sometimes, it's about changing others and how they respond, and sometimes, it's about supporting the person with dementia. And often, it's about all three at once. Like I said, it's a couple of tips to hopefully help, but they don't always work the first time, and it takes a bit of practise, and getting used to trying to speak in this way to support the person with dementia.
In terms of where to get more support, of course, we've got the National Dementia Helpline. We also run, at the University of Newcastle Psychology Clinic, a support programme for family carers of people who have a diagnosis of dementia. And that's an individual programme that we can offer that will run through some of the things that we might need to know a little bit more about to provide the best care for the person with dementia. So, I hope you've enjoyed this and learnt something from it. If you have any questions, of course, get in touch. Thank you.
[Title card: No matter how you are impacted by dementia or who you are, we are here for you.]
[Title card: Dementia Australia. National Dementia Helpline 1800 100 500. Dementia.org.au]
[END of recorded material]
The National Dementia Helpline
Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year. No issue too big, no question too small.