Anxiety
Anxiety can affect people living with dementia, just like it can affect any of us. When the person is anxious, you might notice they:
- become restless, pace or fidget
- do the same things over and over
- cling to someone when that person tries to leave
- closely follow or “shadow” someone.
These feelings of fear, unease or agitation can increase if they’re not treated.
Causes of anxiety
Finding out what is triggering their anxiety can help you to reduce it and make it happen less often. While everyone is different, common causes of anxious thoughts and feelings in people with dementia include:
- trouble understanding what’s happening around them
- worrying about a person or situation from their past
- worrying about their ability to cope with everyday tasks, or finding tasks too hard
- tension or negative mood in the people around them
- grief: even they don’t know exactly what’s happening, they may still recognise something is wrong.
Anxiety can also be a symptom of depression. Talk to the person’s doctor if you believe they are feeling depressed.
What you can do
If your family member or friend is feeling anxious, you can support them by:
- providing reassurance and comfort
- calmly and gently talking to them about what might be triggering the anxiety
- giving the person something to fiddle with, like coins or treasured possessions, to distract them.
Over the longer term, you can try to prevent or manage the person’s anxiety by:
- arranging a doctor’s appointment to check whether physical illness, depression or medication might be causing the anxiety
- noticing which activities trigger their anxiety
- talking about stressful situations and activities in advance, to help them feel safe and reassured
- making sure they’re getting enough exercise
- checking their caffeine intake and making the switch to non-caffeinated drinks.
Dementia Expert Webinar
The impact of childhood trauma on a person living with dementia, with Monica Cations
Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: The impact of childhood trauma on a person living with dementia and their family]
Dr Cations: Hi, everyone. My name is Monica Cations. I am a researcher and a psychologist working here in Adelaide on Kaurna Land. And today, I'm going to talk about the relationship between psychological trauma and dementia. So first, what is psychological trauma? Psychological trauma results from any event, or series of events, or circumstances that is experienced by the individual as physically or emotionally harmful, or life-threatening. And so, the important piece of that definition is the experience by an individual part. Everybody will experience a traumatic event in a different way, and some people will experience no impacts of that event, or a very short-term impact, while other people will experience that as highly psychologically traumatic, that's very important to keep in mind.
Some people who experience psychological trauma, or psychologically traumatic events, will go on to develop what's called post-traumatic stress disorder. So, this is a clinical syndrome, a collection of symptoms that often include things like intrusive reliving of that event through memories or nightmares, lots of distress, and sometimes, lots of avoidance as well. But even where people do not develop post-traumatic stress disorder, where they don't meet the criteria for that diagnosis, the impact of psychologically traumatic events can persist even without PTSD, and can persist for a very long time. This is particularly true for people who experience traumatic events during childhood, at those peak developmental times. Those kinds of experiences can be highly impactful, and have very high-level consequences for people as they move forward. And what's very important to understand in terms of what I'm going to talk about today, is what trauma can, and often does, trigger subsequent experiences. Again, this is most common or most likely when a person experiences these traumatic events when they are children in childhood, because if you imagine that a person's experiencing very difficult circumstances as a child, that can affect their schooling, it can affect their emotional skills, it can affect all sorts of things which have very long-term impacts for that person.
Research tells us that up to 90% of older adults have experienced at least one traumatic event in their lifetime. So, if you've gotten to old age without experience any traumatic event, you're very lucky. Of course, as I said earlier, most people recover from these events, and are able to manage that and process those events, but many other people experience ongoing effects. And of course, events that happen in late life can, themselves, be traumatic. So having a fall, or fracturing a bone, or even the move into residential aged care can, itself, be a traumatic event.
There are two impacts of psychological trauma that I think are really important for everybody to know, everybody watching this webinar to understand. The first is that experiencing psychological trauma can permanently alter what's known as our stress response. So, you might have heard of the fight or flight response before, but we have this inbuilt system that prepares us to protect ourselves when we are faced with a threat. Back in the olden days, if we were hunters and gatherers and a lion was coming towards us, we have an inbuilt system that allows us to get ready to either fight that lion and kill the lion, or to run away from the lion and remove ourselves from the threat.
These days, our stress response system kicks in whenever we are faced with some kind of threat, anything that's perceived to us as a threat. And so, people who have experienced psychological trauma can be hyper alert to any signs that there's some kind of threat in my environment. They can almost have a magnifying glass out looking for signs of threat at any moment. And so, survival mode, that fight or flight mode, kicks in even when I don't really need it to kick in. That's a really important ongoing effect that trauma can have that we need to know about.
Another important effect is that psychological trauma can permanently alter our ability to regulate our emotions. So that is our innate ability to calm ourselves down and regulate our emotional state. So, if you can imagine me out on the street, and somebody's just cut me off in traffic, my emotion regulation skills kick in to tell me that, “Look, it's okay, they probably didn't mean it.” They stopped me from ramming my car up the back of that other car. They remind me that that's probably not going to help the situation, and they help me to come back to calm, and to think rationally. People who have experienced psychological trauma can really have trouble regulating their emotions. And so, when they are stressed, or distressed, or they're triggered, they're hyper alert, they're feeling threatened, that can look like things like anger, like fear, like withdrawal, like anxiety, like resistance, all sorts of things, any kind of strategy to help them calm down because their emotion regulation system isn't helping them to do that.
And so, of course, this is very important with dementia. We know that getting older already can exacerbate symptoms of traumatic stress, even when those symptoms were dormant for many years. And this is for lots of reasons, partly because trauma survivors often have coping strategies that they have used for decades to help them manage their stress. And getting older can make it more difficult to use those coping strategies. So, for example, some people will bury themselves in work, and that will help them manage, or avoid, thinking about these memories, and that can become less helpful as we get older. But also, traumatic stress affects our brain, it affects the neurobiology of our brain, so it enacts stress over time on the brain, it also enacts damage on the brain over time. And so, we know that trauma survivors are at an increased risk for dementia, especially where they also experienced a head injury, a physical head injury during the traumatic event, or during the years of the traumatic events. Those people are particularly at high risk.
What's also very important is that we are learning more about the re-emergence of symptoms of post-traumatic stress disorder after the onset of dementia. It's not uncommon that people with dementia will start to re-experience symptoms of post-traumatic stress, even if those symptoms haven't been there for a very long time. It's been several decades since they last felt distressed by those memories, these things can come back. And there's lots of complex reasons for this, but one of the reasons is because trauma survivors get very good at blocking the memories, “I don't want to think about it, I'm not going to go there,” but dementia can affect how easy it is to do that – dementia can make it more difficult to inhibit those memories when we don't want them.
What we also know about trauma in people with dementia is that it can look different. It can look different to other people, people without dementia. People with dementia more commonly present with things like fear, maybe being more irritable or angry, they can present with a very persistent sadness, or sleep problems. But importantly, people with dementia when they are triggered, or when they're distressed, or feeling threatened, they can exhibit what we commonly think of is responsive behaviour, or behaviours of concern. So, remember what I said before about the very common reactions to stress among trauma survivors, these words are commonly used to describe responsive behaviours or behaviours of concern in dementia. I think in a lot of cases for trauma survivors, these are just manifestations of their traumatic stress, and efforts to cope with being distressed that are being labelled as something to do with their dementia when they might not be. I want to hand over now to Meg Schwartz from Helping Hand aged care who is going to provide a case study which really nicely demonstrates this relationship.
Meg: Hi, my name is Meg Schwartz, and I'm the project coordinator for Helping Hand Aged Care's Real Care The Second Time Around Project. Our project supports a large group of now ageing people called forgotten Australians care leaders to access aged care. I also identify as a forgotten Australian. Today, I want to share a story about Helen. Helen has been de-identified, as has her family. So, Helen is a 70-year-old woman, and she lives with her long time carer and best friend John, and is supported by her daughter Sandra, and her extended family. Helen also identifies as a forgotten Australian, and she's one of the approximately half a million people who spent their childhoods in orphanages, foster care homes, and other out-of-home care in Australia. As a result of childhood trauma, Helen was diagnosed many years ago with complex PTSD. She's never disclosed the detail of her background, she's disclosed some things, but certainly not the detail of the abuse that she suffered as a child to her family or carer.
Since childhood, John advised that Helen has had nightmares, she's also had flashbacks, she's had them since childhood. She's had a lot of difficulty sleeping. She also suffers from panic attacks, anxiety, depression, agoraphobia. She also gets startled very easily, and Helen doesn't respond very well to change even the smallest change. Helen's also been on medications for anxiety for a long time, and also depression. Helen has recently been diagnosed with dementia, or more specifically, Alzheimer's and has been apparently very distressed with the diagnosis, as has the family. John also advised that the family are not coping with some of the behaviours that they've noticed with Helen, which seem to be an exacerbation of her current behaviour. On top of that, she's also recently been approved for a home care package level four, and the family don't feel that the support that she gets from the HCP4 is enough for her.
John said that he has been noticing that Helen has been getting very angry with the aged care workers that come into the home. Helen has been accusing the aged care workers of stealing her possessions, taking her possessions, or shifting them. She's also crying a lot, and John said that she seems to be reverting into a childlike state. Helen has also been wandering around the home, according to John, as though she's actually looking for something. One of the big concerns for the family is that they feel Helen might soon need to go into residential aged care, at least in the next year, and they're really worried that this might re-traumatise her, because it's well-researched, well-documented that forgotten Australians have a morbid fear of residential age care. They also feel a sense of betrayal in doing this or even thinking about going along that journey. Another concern, also, is that because Helen has never divulged the detail of her background, her childhood abuse, they're worried that if she goes into aged care, and aged care workers don't know Helen's history and experiences, how are they going to be able to support her?
So, I think a real shining light, or definitely a real shining light that John has indicated is that Helen has now been accepted for a HCP into Helping Hand Aged Care. Helping Hand Aged Care have had training around forgotten Australians, care leavers, their history, their experiences, their barriers to care, and also, trauma informed care training. So, this has been a really big relief for the family because they feel that this might reduce any re-traumatisation. And also, Helen has recently been receiving counselling through a trauma counselling, so the family feel they're in a better situation than at the start. If you're wanting to know more about Forgotten Australian's care leavers, here are some links on the Helping Hand website. We also have a 1.5-hour online training in three parts that covers all the care leaver groups, and that's available on the website and it's also free. Thank you. Thanks, Monica!
Monica: Thanks, Meg. So, if you are a person living with dementia, and also who has a history of traumatic stress, or you support somebody who does, or you work with people who have this presentation, let's talk about how you can manage this. The first thing to do is to identify that you are maybe experiencing this relationship, this phenomenon, and maybe, symptoms of traumatic stress are bothering you, are re-emerging for you after the on-set of dementia. So, you might notice more intrusive memories that you're starting to remember the event, or think about the event and more than you used to. You might feel more on edge, you might be more irritable, might be having trouble sleeping, you might be spacing out, so sort of just zoning out and losing time, you might be having nightmares, or you might be experiencing something else entirely. So, it's important to pay attention to what's happening for you, and whether this might be a relationship that's coming up for you.
In terms of accessing treatment for the traumatic stress itself, the first important thing to do is to talk to your doctor because there are medications that can help with improving your mood, with reducing your distress, reducing any kind of anxiety or feelings of distress, that hyperalert, out-of-control, emotions feeling, there are medications that can help with that. Psychotherapy, so seeing psychologist or a counsellor is almost certainly helpful, although we don't have a lot of research about this, as a clinician, I can certainly say I know that people really benefit from psychotherapy and counselling. It's important with psychotherapy and counselling to be a little bit brave to engage in exposure, because exposure really is the kind of key therapeutic element of treating post-traumatic stress disorder, treating any kind of stress associated with traumatic events. So, you might hear this called things like prolonged exposure, narrative exposure, EMDR is another common one at the moment that's very popular, but in all trials, no matter what modality the therapist uses, as long as there's an exposure element to that therapy, we find significant improvement in PTSD symptoms among older people. And there's no evidence that people with dementia don't benefit in the same way that other older people do.
It’s important, also, for a therapist or a counsellor to help you develop coping skills. We'll talk about that a bit more in the moment, but I think something important to take away from what I'm talking about today is, unfortunately, sometimes the only way out of things is through them. And so, taking the time to sit with memories, and work through them, and really process them is really essential to reducing the impact that they have in your life.
Okay, so what about when you are distressed? When you're experiencing that hyper alertness? When you're experiencing threatened, and your emotions are sort of all over the place, and you're in that emotional storm? So, what I'm going to talk about today is helpful for people who have dementia and are experiencing that, but also if you care for a person who is becoming distressed, or you work with people who are becoming distressed and they have dementia. The way I like to think about this is through the idea of this window of tolerance – all of us have our window of tolerance. This is where we're in our window of tolerance when we feel calm, when we feel relaxed, when our brain is working well, we feel logical, we're thinking things through calmly and rationally; but when we get distressed, or when we get angry, or when we get frustrated, we often move either upward into hyperarousal, very distressed, crying, angry, these kinds of emotions, or we move down into hypoarousal where we just feel really zoned out, exhausted, withdrawn, sad.
The key thing that I hope you take away from this webinar is to, when you are distressed, don't do anything until you're back in your window of tolerance. Trying to reason with yourself or with the person, or trying to think rationally about things is very difficult when you're sitting up in the red zone or down in the grey zone. And so, how do we help a person get back into their window of tolerance? As I said, the first thing is avoid any kind of logic. This is not the land of logic. We are in emotion land, so what we want to do is work with those emotions. We want to wait for that distress to come down, and it will come down. It always comes down. We want to retreat to somewhere safe and private, if that's what we need.
We want to use some breathing exercises to calm and slow down our breathing. We might like to do some grounding exercises, and I'll give an example of one in a moment, but grounding is about getting back to our senses, and really digging our feet down into the earth and feeling connected to the present, rather than feeling the distress of the past or the worry about the future. You might like to use distraction of creative activities to help you come down to calm. Once you are back at calm, once you're back in your window of tolerance, that's the time to debrief. Talk to people around you about what happened, what set you off, what made you feel afraid, or sad, or angry, so that then you can all work together to preventing that ever happening again.
This is one of my favourite grounding exercises, you might have seen this before. This is the 5, 4, 3, 2, 1 technique. And again, this is about bringing your attention to your senses which helps you enter the present. So, look around at five things you can see, four things you can touch. Notice what it feels like to touch them, and moving through the rest of your senses. Doing these things before you start to try to think rationally, and try to have some logic about it, really important bring yourself back to calm first.
And lastly, I want to just very briefly talk about accessing care if you are a trauma survivor. So, we know that from lots of research that accessing healthcare services or aged care services can be really difficult for trauma survivors, partly because accessing any kind of care service introduces a power imbalance. So, the trauma survivor has to trust the person that's coming to care for me, I also have to trust the organisation that's providing the care, and I also have to trust the system that funds that care. That's a lot of trust for somebody to generate, when I've been through an experience, or multiple experiences, where I couldn't trust what happened in that experience. It also means I have to accept limitations to choice and control, and that's very difficult, that can be very difficult to do. It's very important that care workers understand this, understand that it takes a lot through a trauma survivor to accept that care into their life. So, if you're trying to access care services, you might feel mistrustful of the care workers or the people who are going to care for you. You might feel quite reactive. You might find it difficult to use your coping strategies in that context, or you might feel nothing at all. Everybody's different. Everybody has a different experience.
So, my advice is to work together. You, your family, your carers, the staff that you are working with, working together to figure out what is it that sets me off? What is it that makes me feel afraid and angry? You do not have to disclose about what happened to you and the experiences you had, but it is very helpful to tell people, "Look, I just don't like it when a male carer touches me." That's enough. That's all you need to tell people if that's going to help them to provide safe care for you. Work with care providers to figure out how do I cope? When I'm under stress, what helps me calm down? And what do other people need to know to help me cope? How much do I need to share? How much do I feel safe and comfortable sharing? And how can those care providers create the safe environment for me to share? That's important.
And if you are a care provider, thinking through how to deliver trauma informed care, one really great part of this is engaging in training like the training that's on offer at Helping Hand, and making sure that you're delivering care that restores power back to that person, really gives them choice in all things. Creates very safe environments where you are very trustworthy and transparent, but also builds the self-worth of that person through respect, through collaboration. And so, please feel free to reach out to us to connect, to talk, or to access any kind of support. We would be happy to do that. Thanks very much.
[Title card: Together we can reshape the impact of dementia]
[Title card: Dementia Australia. 1800 100 500. Dementia.org.au]
[END of recorded material]
It’s okay to take care of your own health and happiness. If you're struggling as someone who cares for a person with dementia, contact the free, confidential National Dementia Helpline on 1800 100 500, any time of the day or night, for information, advice and support.
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.