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The Implications of Living Well with Dementia: Exploring Resilience with Dr Julie Christie

Dr Julie Christie, University of Edinburgh

A member of the Scottish Dementia Research Consortium and visiting research fellow at the University of Edinburgh, Dr Julie Christie has published work on ethical practice in research and most recently resilience in the context of dementia. We talked to her about how people can be resilient and the ways in which people with dementia can adapt in the face of threat, particularly to their sense of identity – and why this can unlock new and supportive understandings of those living with the condition.

How did you start researching the idea of resilience in dementia?

I worked as one of the first nurse care managers in Scotland in the ‘90s in a social work setting and undertook the first Master’s degree in dementia studies in the UK at Stirling University. I regularly used resilience toolkits with children and families as a social worker, but when I asked for those same tools for people with dementia, I was told that they didn’t exist.

Nobody could answer why - or else the reply was that resilience “didn’t apply to people with dementia”. So my PhD on resilience at the University of Stirling evolved naturally as a result of asking those questions.

I specifically focused on ageing with dementia because both of those things can result in great challenges to identity. I was interested in the way in which people respond to those adversities, and still retain a sense of wellbeing.

What is the definition of resilience – in the case of dementia particularly?

There’s no one definition of resilience - it’s an ambiguous term, and it means different things to different people. The two elements considered essential for resilience though, are exposure to adversity and the achievement of a positive adaptation in the face of that adversity.

As a social worker, and in my personal life, I know, through the relationships and discussions I have had with people, that people with dementia can be resilient – so why is there no evidence of this and why don’t we talk about it?

I had to answer a couple of questions in my research such as ‘does the concept apply to people with dementia’ – and ‘if so, what does it look like? How do you recognise it and how can you use it as a practitioner or care provider?’

"Resilience is a process. In the context of dementia a person can experience many threats to identity – resilience explains how some people respond and adapt."

In relation to dementia, through my research, I had to develop a working definition -which I concluded was that resilience was “adjustment in the face of threats to personal and public identity experienced when ageing with dementia”.

I worked closely with people with dementia, listening to stories of their everyday life, and through these, revealing what might constitute as an adversity or a threat to each person’s sense of self.

For example, a person might experience threat if another person points out that they have forgotten something important. Or self- image may be threatened where a person loses important community roles or standing as a result of their condition. My research revealed that people with dementia can use a range of internal and external resources to adapt to these changes in order to maintain wellbeing, despite adversity, which is the process of resilience.

Did you find anything surprising about resilience in people with dementia?

The first point is that the concept of resilience is definitely applicable to people with dementia, but secondly, that not everyone is resilient. And if we know that, then it means that we can explore the implications of phrases like ‘living well with dementia; because not everybody can live well.

Some people can live better though if we recognise resilience. Often carers can misinterpret the resilient responses of the person concerned and label these changes in behaviour as ‘symptoms’ of dementia.

One of the ways in which we can support people to live well with dementia is to provide space for resilience to emerge and to mobilise those internal and external assets that the person has access to that can help to support the resilience process.

"We have to understand resilience when we see it and know how to harness it - and at the moment we don’t really."

Is resilience a personal thing - or a set of things, both individual and social?

For me, resilience is an accumulation of a personal bank of skills, experiences, knowledge and resources that people build over their life. I refer to that as the ‘resilience reserve’ within my research and it is this reserve that people dip into in order to adjust to threats.

Sense of self can be threatened by different things. This can be a change in relationship with someone, or physical things such as an accident at home, and either way it can take time to recover from that. So resilience isn’t ‘hardiness’ or invulnerability, it’s about adjusting to the circumstances you face.

After a fall, for example, you might take action within the home to make it safer, such as installing a handrail or on a psychological level, and think, “When I come down the stairs I’m going to be more careful and take things slowly.”

However, another person might instead avoid using the stairs or consider the accident a singular incident, despite evidence to the contrary. Both people could be described as ‘coping’ with this scenario, but one uses their skills, knowledge and contacts to adapt the environment or their behaviour or both, while the other seeks to avoid or ignore the situation.

The other important point about resilience is that it has to be a response to something that you experience as a challenge personally. What was really interesting was that for nearly everybody in my study “having dementia” wasn’t the big threat to them, it was small things such as relationship changes.

For example, a daughter assuming that her mother needs help with the house when she absolutely stated that she does not. That can be perceived as a threat, along the lines of her thinking: “Are you saying my house is dirty?”

Dr Julie Christie is a visiting research fellow at the University of Edinburgh and a member of the Scottish Dementia Research Consortium.

For more information on dementia, follow Alzheimers Scotland on Twitter.

So, the enlightening thing, for me, was that it was the micro day-to-day elements of relationships that most affect people’s identities in the home and socially within the local community.

How does your work help to change the understanding of dementia?

The important thing is that people with dementia can make adjustments. For example, I knew a gentleman with dementia who told me that he’d had to give up golf. Then later in conversation, he corrected himself and said, “I didn’t have to give it up, I moved house, and that’s why I don’t play.”

Probably, in reality, he would have had to give up golfing independently, but that would have been experienced as a threat to his sense of self as a skilled golf player. As a result, he re-ordered the story details and concluded that moving house was the reason for this change in circumstances, not his loss of ability due to dementia.

That’s a small, superficial thing you might think, and one that would pass you by in conversation, but it is resilience in action – and it highlights the ways that people respond to threats about what they can still do and what they can’t. And if we understand better that people do experience threats to their identity, we can then understand their behaviours and responses more.

Does resilience change at different stages of dementia?

There’s been research looking at changes to personal relationships within dementia that concluded that even in the later stages of dementia people can be acutely aware of loss of status. The way that dementia affects each person will be different, and how engaged people can be in the present is also dependent on good care and support.

For example, we know that pain is under-attended to in people with dementia, and even more so if people are in the later stages, as they are not as able to express themselves - and distressed behaviour over this can be misunderstood as a symptom of dementia. So, fundamental things like pain management support resilience too.

How can greater understanding of resilience help us to deliver better support for people with dementia?

I’m writing a practice guide, aimed at social workers, to provide a toolkit that can guide people through that process - because we have to understand resilience when we see it and know how to harness it, and at the moment we don’t really.

We misunderstand what people with dementia say and do, and attribute so much of that to the symptoms of dementia, without seeing the resilience reserve of the person.

We need to know how to decide whether a person is resilient in any particular situation. If they are, what resources of their own are they using in order to manage this situation? What resources do they have that they’re not using that we can help them to use? And what resources do they have in their personal and social lives that we can mobilise for better use?

And where people can be resilient but don’t have the necessary resources readily available, we can then step in to provide these, and then you can better use things like self-directed support, targeted therapeutic interventions etc.

We need to look with the same critical research focus on how to make resilience more visible for older people and people with dementia, as we do with other groups, and to use the concept of resilience responsibly.

Ultimately it will help us to target resources more effectively, people with dementia will have better outcomes, and there will be better outcomes too for organisations.

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