Webinar: Younger Onset Dementia and the Caring Role
Dementia Australia webinars are free videos where subject experts discuss topics relating to dementia for a general audience.
In this webinar, Dr Wendy Kelso discusses both positive and negative emotions and the importance of wellbeing for people caring for someone with younger onset dementia.
You will learn:
- how the caring role is unique in younger onset dementia
- how to equip yourself with strategies and knowledge to assist with providing care to loved ones
- how to ensure that your own self-care is maintained and valued.
Transcript
[Beginning of recorded material]
[Title card: Dementia Australia]
[Title card: Younger onset dementia and the Caring Role]
Dr Kelso: Hello, my name's Wendy Kelso, and I'm here today to talk about young onset dementia, and the caring role, for the Experts in Dementia Series. I work as a clinical neuropsychologist at The Royal Melbourne Hospital, at the Neuropsychiatry Unit, and I also run the Frontotemporal Support Group for Dementia Australia. I'd just like to begin by Acknowledgement of Country. I begin today by acknowledging the traditional custodians of the land, on which we meet today, and pay my respects to their Elders, past, present, and emerging. I extend that respect to Aboriginal and Torres Strait Islander peoples here today. This is what we're going to talk about today, which is caring for someone with young onset dementia, and how that differs for caring with someone that has dementia in their '70s, or '80s, or '90s. The rewards and challenges of caring, personality types and caring, care partner stress and how to reduce it, emotions in caregiving, and how they can impact on the caregiving experience, and how to use supports to your advantage.
So, what do carers do? Caring is a very special role, and often, carers have a huge range of different tasks that they're responsible for, including emotional care, aspects of personal care, domestic care, physical care, looking after finances, providing health care, and also, communication. How is caring for someone with young onset dementia unique? Dementia is often unexpected in a younger person, and many people take a very long time to actually get a diagnosis, because when they visit a GP or a specialist, sometimes, they're not believed, and the GP may not believe that dementia can affect a younger person. And that delay into diagnosis can be very important, because it can impact how the person feels about the person living with dementia, and believing that the changes may not be real. The care partner may still be working, and this impacts on the family, which means that there's often financial hardship, and a loss of income. And one of the people in the relationship may have to stop work, or the other has to take on all the burden of the financial responsibility.
There are often dependent children involved, and also, you may be looking after people, your parents, for example, and be part of a sandwich generation, where you're looking after younger children and parents. There's often a grief and loss, and changes of roles and expectations. And it's very difficult because the future's very uncertain, and often, people don't know what the future's going to look like, and how long the person with dementia will be alive for.
So, what influences caring in young onset dementia? Something that really influences caring is changes in relationships, and often, there can be relationship changes because there's frustration on both sides. The person living with dementia may have had to give up work, and that may be a huge loss for them, and the other person may have also had to give up work to care for the person with dementia. There may be family tension in the children because they don't understand the changes that's happening in mum and dad, and wonder if it may be their fault. Sometimes, there's isolation and loneliness, and often, friends stop visiting because there's a stigma involved in dementia, or friends may not know how to relate to the person living with dementia anymore.
What also influences a relationship is the personality characteristics of the care partner, and the person living with dementia. And these may be personality characteristics that have been lifelong. There may have been tensions in the relationship before the person developed dementia, and that can impact on caring for someone once they have a diagnosis of dementia. Sometimes, there's feelings of guilt and obligation, wondering if you could be doing a better job caring, feeling obligated to be in a caring role, when sometimes, it's very frustrating to do that. There's also stigma involved with people treating you differently, and people treating the person living with dementia differently. Often, there's a huge amount of grief, and sadness, and devastation. Why did this happen to us? What do we do to deserve this? And there is a difficult balance of caregiving and self-care.
Other things that are impacting the caring role are also the physical symptoms associated with dementia, the type of dementia – so if someone has Alzheimer's disease, for example, the type of person they are and their personality may be preserved until quite late in the illness, but with frontotemporal dementia, there's often changes to behaviour and personality quite early, and that can impact on intimacy and the relationship between the two partners. Also, rate of disease progression can impact on caring – so, for this, it's very slow illness progression to very quick. Behavioural symptoms, so if the person has changes in behaviour, that can cause changes in the relationship and can be difficult to manage. And also, can sometimes be frightening, or young children may not understand what's going on, if they live in the family home. And dementia may be one of many medical conditions that the person has, and there may be quite complex medical appointments that you have to attend, and take up a lot of time.
So, relationships and connection are really core in dementia. And I think, one of the most common things that we find, particularly when I'm running support groups, is people grieve the loss of the connection with the person living with dementia. And the person living with dementia grieves that loss of connection, as well. They may not be able to communicate the way they did before, because sometimes, there's language changes, where the person with dementia may not be able to express what they want as easily as they did in the past. They may lose language altogether. They may not be able to understand language as much. And also, there may be changes in what we call social cognition, so the person with dementia may find it more difficult to read emotions of the other people living in the family. They may find it more difficult to see if someone's happy, or sad, or frustrated, or angry, because a part of the brain that processes emotions and facial recognition is damaged.
They may not have the same empathy towards the other people in the family, due to changes in the brain, and that could all impact on the connection relationship together. All people need love and intimacy, and compassion and understanding, and you may need to think of other ways to be able to communicate or to show compassion, and love, and intimacy, and get your needs met. Often, we find it helpful for people to think about what brought you together in the first place, and why are you the carer in this particular relationship, and what still binds you together? What's still left in the relationship that's very special and connects you, and think about the family of origin, and the culture, and your shared past experiences. And also, try and live in the present and not worry too much about the future. Live day by day, and think about shared memories that you're making together now.
What are some of the rewards and challenges of caring? Some of the rewards of caring are it's a very important role, and there are actually many rewards. And it is an opportunity for personal growth and developing new skills. For some people, they may have never been a carer before, and this may be the biggest challenge that they have in their life. And it's also the biggest opportunity for personal development and growth. It's a time to strengthen the relationship with the person that you care for, and meet new challenges. And also, it can be really rewarding to know that you've contributed to improving someone's quality of life, and can provide a sense of meaning and purpose for the person that's caring. But there are lots of other consequences of caregiving, and particularly when you're caring for someone with young onset dementia, it can be actually more difficult than caring for someone who's older that develops dementia.
One of the big things is, obviously, financial changes, which is there is often a reduced income to the family unit, because one person may not be able to continue work, or they may have to work in a reduced part-time capacity. You may have to access super insurance early, or take an unexpected retirement. There are physical changes, as well, which means that people that are in caring roles, and lots of research studies have shown to have increased prevalence of chronic health conditions, and poorer mental health, and reduced quality of life. And there's high rates of depression and anxiety in caregivers, and depression rates increase with illness severity. So often, as the illness progresses, and the person with dementia may not be able to do the same tasks as they did before, and the actual amount of caring increases, both physically, emotionally, and potentially, behaviourally, often, depression rates increase in the person or the people in the caring role.
I think it's important to think about why are you the carer? And some people start being the carer because of expectation, or there's no one else available. But I think it does impact on the caring journey, and I think it's important to spend some time reflecting about why you're in this role. And look, some people are born carers, and their personality is ideally suited to caring. They're patient people, they love caring for others, but not everyone is like that. And some people, in a caring role, are not a patient person, and they can find caring very, very difficult. And some people are just not suited to the caring role, and may need a lot of support. Now, there's nothing wrong with that. No one's to blame for that but just different personality types can impact on the caring role. So, think carefully about your own strengths and limitations, when you're in the caring role, and even before you take on those tasks.
So why are you the carer? Is it because you love the person and you've been together forever? Is it that you feel a sense of duty or obligation, or there's other people in the family that are expecting you to care? For example, you might be the eldest sibling, and there's a family or cultural expectation that you will look after the person? It may be because you feel guilty, or the relationship wasn't wonderful before the person developed dementia, and you feel now that you must look after them? Expectation, maybe you need to for financial reasons, and there's no other option, and you don't have enough money to actually get supports in, or there's no one else available.
There's been a lot of research in personality types in caregiving, and some things that are found to be protective, which means that the person that's in the caring role maintains a greater level of fulfilment and quality of life, and reduced feelings of depression and anxiety. People that tend to be calm and less reactive, and able to regulate their stress levels. People that are socially connected, so they have a lot of support around them, are able to call on friends or family. That they're able to think flexibly, and if things go wrong, that they might be able to problem solve.
They've got the ability to delegate and the confidence to ask for help, and they also feel confident in their role as a carer, and that can be very difficult to do at the beginning, and often, throughout the journey, confidence can be rattled because as the dementia progresses, there are new challenges every day. And you may find that you've just solved one challenge, and then the dementia changes a little bit again, and the person has a change in ability, or there's different challenges that come up for both of you, and you have to adjust again, which can take some time.
Just wanted to talk now about carer stress and burnout. So, what is burnout? It's a state of physical, emotional, and mental exhaustion for those providing care to a friend or family member. And it's often accompanied by a change in attitude from positive and caring, to appearing negative and unconcerned, with many stages in between. So it can be, for example, someone who's always shown a great deal of empathy and compassion, feels that their emotional bucket is empty. So, for example, that they've been caring for quite a while, or they don't have much support, and they don't have many resources left to be able to care for the person, and they get exhausted.
You can see here, from this graph, that on the left-hand side is performance, and then on the right-hand side there's stress levels. And there's what we call a sweet spot, where a little bit of stress can be really helpful, and can improve your performance, and you perform optimally. But you can see, if you get too stressed or you get too tired, then there's really negative impacts of having too much stress. And increased cortisol over a long period of time can have a lot of negative effects on health, and can cause significant illness – people to break down, people to become very depressed, and burnout. So, it's about finding the right level, sort of in between, if you can, where you know that if you're finding that you're nearly at the point where you know that you're starting to feel differently, how you did before, and you're reacting differently, or your level of compassion has been significantly impacted, think about whether you might be developing burnout.
Why does carer stress occur? Often, people are so busy caring for someone that it can become really easy to neglect their emotional, physical, and spiritual health. And life doesn't stop when you're a care partner, particularly, when you're young. So, for example, when you're caring for someone with young onset dementia, you may still have young children, you may be looking after elderly parents, you're still working, and you have to keep going on. And the demands can sometimes feel overwhelming, which leads to fatigue, and a feeling of hopelessness.
What increases stress levels and what can we do about it? Often, people talk about that other people just simply do not understand the experience that the person's going through, either the person living with young onset dementia, or the care partner and family. And because young onset dementia is quite rare, often, people just simply do not understand, and they've never been in that situation, and they can find it quite hard to relate. And that means that, sometimes, people stop visiting because they're not quite sure what to say, and they feel that they might embarrass or upset the person living with dementia or the care partner. So therefore, that increases loneliness and isolation, which has negative impacts on mental health. Often, carers do not get the help they need or they don't know where to access it. And there's often a lack of resources, and education, and training, specifically about young onset dementia and the different types, impacts on behaviour, and also, what happens after the diagnosis.
It's quite difficult to access post-diagnostic care, and Dementia Australia now have a post-diagnostic care service, once someone has been diagnosed. We often find people often wait a very long time to get diagnosed, and then once they receive the diagnosis, that's it, they get very little follow-up, and actually, the time they need the support the most is actually after the diagnosis, not beforehand. There's a lack of specialist services for younger people, and that means a lack of specialist services for respite, for different activities that are meaningful, for those people that need to move into residential care, there's a lack of appropriate facilities and setups. And there's also a need for behavioural support, and often people find that very difficult to access.
So, what are some of the symptoms of burnout? How would you know if you're becoming burnt-out if you are a care partner? Some people withdraw from family, and friends, and loved ones, and they stop going out, and start refusing invitations. That they have a loss of interest in their usual activities, or when they do their usual activities, they can't gain the same pleasure that they’re used to. There may be changes in sleep or appetite. Some people feel blue, or helpless, or hopeless, and they just feel like life's not worth living anymore. Or they may become sick more often, that they get colds, or flu, or upset tummy, and often, these are due to stress. Becoming more irritable than they normally would. And look, often, the symptoms of burnout are very similar to depression, and they could require sort of clinical treatment. So if you're feeling that you're at the end, it's really important to access supports, ideally, before you reach burnout, but particularly, if you do reach burnout, and the first point of call is usually a really good and supportive GP.
Now, I want to talk about emotions in caregiving, and I think in the literature and also in the media, there's many images of people that are caregivers, that are Florence Nightingale and looking after people, and all positive emotions about caregiving. And I think sometimes that can make it really difficult to acknowledge that, actually, sometimes it's really, really very hard. So, I think it's important to acknowledge that all emotions about caregiving are valid and important, and acknowledge your feelings, not just the positive ones about caring, but also the ones that are actually challenging or difficult. And some of these feelings are hard to admit, for fear of being judged by others, or burdening other people, or acknowledging that maybe you're not coping, and some people feel that that might be a sense of weakness, and they're too scared to talk to other people, that they're not actually managing as well as they would like. And there is no right or wrong way to feel. This is often the first time anyone's actually looked after someone with dementia, so you're learning every single day.
What are some of the emotions that people feel when they're caregiving? Sometimes, it's ambivalence that they're not really sure if they want to continue in the caring role. Sometimes, they'll feel very anxious about what the future may hold, what that may mean for them, for their children. Sometimes, it's like Groundhog Day, where people find that it's quite boring looking after someone with dementia. Particularly if there's lots of changes in behaviour, or the same things are happening each day. Sometimes people can find the behaviours or changes embarrassing or disgusting, and there's a lot of embarrassment. Sometimes, particularly teenage children, if there are changes in the person living with dementia, they may find some of these changes embarrassing. The person living with dementia is not trying to make them feel embarrassed, but they can't help it, due to brain changes, but it can still make children and teenagers sometimes feel embarrassed, or not wanting to bring family and friends home.
Often, there's fear about the future. Will you be able to cope? Will you be able to manage if changes occur again? There may be jealousy with other friends and family that are not in a caring role, with the freedom that they have. It can be resentment towards the person you're caring for, and feelings of anger and hostility. And often, the overwhelming feeling is of loss and grief, and it can feel like a rollercoaster. And we often talk to families that there's huge changes, minute by minute, hour by hour, day by day, and sometimes, you just have to hold on. Some days will be better than others, but it is a huge rollercoaster of emotions, particularly, when you're first diagnosed, but right through the entire caring journey.
So, what can we do to help? We can identify and acknowledge feelings, and practise self-compassion. We can keep active and make sure that we look after our physical health. We can create a support system around us by enlisting friends and family, and also care organisations, and Dementia Australia. You can join a care partner support group, and Dementia Australia run a variety of different caring support groups which I'll talk about in a second. Often, people find grief counselling or counselling very useful, and education, and also getting some advice about cognitive interventions, to compensate for changes in memory and thinking, and also to assist with changes in behaviour, looking at respite, and sleep, and self-care.
So, what about grief and loss in young onset dementia? Often, when people are first diagnosed, there's a huge amount of grief and loss, both for the person living with dementia that have just been diagnosed, because their future is not what they thought it was going to be. Often, they may not be able to continue working in the same type of work that they had, which can be core to their sense of identity. They may find that their role in the relationship has changed, and they may find that the relationship with their partner, and their children, and their parents has also changed. And dementia is a life-limiting illness, so they're also thinking about the future, and often, for the care partner as well, there's a huge amount of grief that they were hoping potentially to retire together, to do things together, until they're old age, and what they had of their expectations of the future have been totally altered.
The experience of grief is very personal, and it's really different for every family, and there's no timetable for recovery. Often, people find that they are grieving throughout the illness from the very beginning to the very end, and then there's a different type of grief after the person dies. And often, it's what we call disenfranchised grief that can be very difficult, which is grief that's not acknowledged by society, that actually happens before the person with dementia dies. Where there may be changes in the relationship, and in intimacy, and communication, and possibly, in personality. And it's a different type of grief, and it's a grief that many people in the community don't acknowledge, or understand, and this can mean that it's quite isolating for people in a caring role.
I wanted to talk briefly about respite now, and respite is absolutely vital, and much needed, but it's often underutilised. Carers often are too nervous, or worried, or guilty, to organise respite, or it can feel too overwhelming to actually get organised, and to get all the paperwork done, and work out where the best place is. And particularly the first time that you utilise respite, it can be so stressful that people are reluctant to do it again, particularly, if it's first time they've been separated from their partner. We always recommend people to utilise it in the early stages, in the middle stages, and the later stages of the illness, so people living with dementia can get used to it. And there's adjustment on both sides, and it's really important to approach with thought and care. There are different types of respite. It may be that you would prefer in-home respite where someone comes into the home, and stays with the person living with dementia in your family home, or you can organise out of home respite in a house, or a residential care facility that's set up for someone with young onset dementia.
One of the things that occurs with respite is, often, people are so stressed before they have a period of respite, getting the person ready for respite, that when they actually have the person in respite, they find that they're not utilising their time effectively. And they're so stressed with a million different jobs that they don't know what to do. We often counsel people to think about what are specific goals that you really like to accomplish, before you plan the period of respite, and the goals must be attainable during the respite time. So, it may be simply that your goal is to catch up on sleep, or you want to clean the house, or you want to go out to lunch, but having those goals can be really good because it means that, in a lot of the research, that care partners have significantly improved satisfaction if the respite is planned and the goals are achieved.
One of the most difficult things that people find is asking for help. And sometimes, it's because they feel guilty and they don't want to burden others. Many people find that people say, "Oh, yes. Just give me a call anytime that you need help." But they don't actually give specific examples of what they could be helpful with, and so, people don't actually then call the person to enlist the help. So, how to ask for help? Be specific – if you're talking to friends and family, tell them what you'd really like them to do, and utilise the strengths of those around you. People are often waiting for you to ask but they don't want to burden you, and they don't want to intrude, and they don't know exactly how to communicate what help would be useful. And people may be nervous or uncomfortable, and they may not understand dementia, so try and normalise the experience for them. Let them in, tell them what's going on with you, and also with the person living with dementia, so they feel more comfortable spending time and being able to assist you.
Some people are much better at providing practical assistance than emotional support. That's absolutely okay, but think about your group of friends and family, and try and work out who's going to be best at what. Tasks to consider delegating – it can be emotional support with a person with young onset dementia. For example, if the person with young onset dementia has got a lifelong friend, or a group they used to be involved in, or work colleagues, they might be able to provide emotional support. Or emotional support for the person in the caring role, so friends and family, or a best friend from a long time ago that knows you really well that you trust, and that you can break down in front of, and if you're comfortable, crying and acknowledging that it's really difficult.
Sometimes, people are much better at practical things such as managing medications or collecting scripts. They may be useful at providing housework assistance or garden maintenance. They may be able to provide personal care, or you may know someone that used to work as an accountant, or can help with finances, or they may not be good at the practical support in the home, but they may be great at providing diversional activities, such as taking someone out on a drive, or an outing, or to a music festival, or to, for example, a choir, or something that the person with dementia might really love to do. And they may also be able to provide involving them in art, or sport, or reading them stories, writing together, or providing photos of times in the past, where they've got the shared experience, and they can reminisce about happy memories.
Just wanted to talk now briefly about available supports. There's a range of available supports, and all of these are on the Dementia Australia website. There's a National Dementia Helpline and Living with Dementia programs. And there's a variety of support groups for care partners of people living with young onset dementia around Australia. And at the moment, Dementia Australia's actually increasing the range of support groups available. At the moment, they have been provided via Zoom recently, and probably what will happen, there'll be Zoom groups, and also, in person support groups going forward. There's also a library at Dementia Australia with a great range of books and resources, and there's a variety of helpful websites.
If the person living with dementia is under 65, they're eligible for the National Disability Insurance Scheme. And this can be accessed with support of when you first get the diagnosis, by using a social worker, for example, on the team. And behaviour support can actually be provided through the NDIS, if it's deemed reasonably and necessary. And for people over 65, it can be My Aged Care. There's a list of other supports here, so some people with young onset dementia have rarer forms, such as motor neuron disease, or Parkinson's disease, or frontotemporal dementia, and we find that the Rare Dementia Support in the UK has actually got a range of excellent information and support available for different types of dementia that are quite rare.
I'd just like to thank you for having me today, and also, thank people living with dementia, and their families. Every time that we have the privilege of looking after a family living with dementia, and their care partners, we, as health professionals, learn more about dementia, and that can help us assist other people in the future. I'd also like to acknowledge Neuropsychiatry, Royal Melbourne Hospital. Thank you 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]
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