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Seeing what they see

Dr Keir Yong (UCL Dementia Research Centre) and Dr Mary Pat Sullivan (Brunel University department of Social Work) describe a study of PCA.
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The Seeing What They See Study is really a collaborative project involving particularly University College London in terms of the Institute of Neurology, as well as their civil engineering department, Brunel University, and also on the School of Hygiene and Tropical Medicine. In terms of the background of this study, really it came about following an increased awareness about the consequences of cortical visual problems in Alzheimer’s. And so really the Seeing What They See Study is trying to really get a better understanding of these sorts of problems, and ultimately hope to really develop strategies and approaches to help minimise the effects of some of these problems.
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In terms of our element of this study, the social scientists at Brunel University are really complementing what’s happening here at University College London, in that we’re actually in the individual’s homes, and seeing the individual not just an individual with a disease, but an individual in a family unit. So it’s the coping of the problems that are associated with the illness, but then everyday coping within a family. From some of the studies that have been done in posterior cortical atrophy, clearly the sort of visual problems that arise as a consequence of Alzheimer’s disease can be incredibly life-limiting. It can interfere with people’s ability to perceive things, even if they’re right in front of them in clear view.
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It can make them less confident, getting around even inside the home. And it can really undermine what you consider quite everyday activities, things like for example, reading. So really, I think a big incentive behind us doing the work is not just to get a better understanding, but to try and identify ways, quite practical ways, that we could apply the understanding to try and really identify what are the best approaches or strategies to help support individuals with this sort of dementia-related vision impairment. We’ve been focusing on a number of different areas.
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And one in particular is trying to develop a better understanding of how professionals who are out there in the community that support people with dementia anyways, how much they understand the needs of individuals with PCA specifically or visual-related problems in Alzheimer’s disease. The other part of our study was working and speaking with carers. So the often the spouses, but sometimes the children of people with these diseases, to help understand how they are coping and adjusting with everyday matters within the home and outside the home.
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So for example, just going shopping, and how they’re managing over time in terms of as the disease progresses and as symptoms change, how do carers in fact respond and where do they go for help if they need help? And then actually then speaking to individuals with the disease to find out more from them what is it that they are struggling with? What do they think they need help with? What do they think we can do to help them cope over time? It’s a very exciting approach from my point of view, because it’s nice that patients and carers are actually being directly asked about what they would like support with.
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Because for example, there are some things that might be intuitive seemingly to a clinician or researcher where clearly, the biggest problem you’ve got is this or maybe we should find ways to address that. And actually, if you speak with a patient and carer, it’s like, well, that is a problem. But actually I’d like you to prioritise maybe getting some more support in terms of a social situation or something rather than targeting a very specific activity. I also work on the part of the study that is being led by UCL civil engineering. So this is something which is quite new to our department. Because generally our background is in trying to isolate very specific cognitive processes.
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But in the PAMELA Lab, which is really the department we carry out testing in civil engineering, we look at more everyday activities which might seem simple, but each of those call on a variety of different processes. So it’s essentially a giant warehouse where we can construct rooms, like for example, an open plan room, a series of corridors, a staircase. And what we can do is carefully control things, like for example, the lighting and the presentation of that room. And we can keep the room relatively simplified. By introducing or moving a couple of things, we can see about how one of those different aspects of the environment could really predict changes in patients’ performance.
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So what we’ve done in the PAMELA lab is carry out a variety of tasks relating to things like object localization, so for example, asking patients to walk around a room, pick up an object, finding a door within a room, or for example, walking down a few steps. I think from our perspective, what has been most, I suppose, dramatic, is when we go into individual’s home, the eagerness to which they want to tell us their story. And so that they can share their story with others so we can learn something about PCA and how people manage overall.
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But more importantly, when we go into individuals’ homes and we talk about their day-to-day management, and literally, we walk around their homes with them so they can talk about how they’re managing to do their morning routine or mealtime routine or whatever, is that often gets sidestepped by the discussions about how they’re coping as an individual and finding meaning in life despite this illness, or how carers are struggling in terms of maintaining a spousal relationship for example. And we’ve demonstrated, I think, in individual’s homes how resilient people can be.
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And through just simple trial and error, they come up with quite creative ways of managing, because they know the individual and they understand their home and where the troubles seem to be on a day-to-day basis. So people come up with very creative things, like simply clearing the clutter out of the room or adjusting the lighting in the home or as well, taking advantage of technology that’s available through the National Institute for the Blind. So they do come up with strategies on their own that can be effective for one family and one individual, but not maybe for another.
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Ultimately what we had hoped to do is really identify practical, low-cost approaches to really supporting individuals with dementia-related visual impairment, whether they have general Alzheimer’s disease with some kind of secondary visual problems to their memory problems, or people with a diagnosis of posterior cortical atrophy. I think there’s a couple of approaches really whereby again, we could opt for a more technological approach where we might be making small modifications to their environment. Or alternatively, it could be more things like an educational approach, so giving carers a better idea of the background of some of these problems.
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And maybe trying to encourage their initiative about ways that they could think carefully about the environment, so for example, again, someone who might have a lot of clutter in their home, or even simple things like rather than have your whole collection of shoes in a walk-in wardrobe, maybe to leave out a couple of pairs and see how that goes down. And equally information for professionals, it’s incredible how little professionals really understand about early onset as well as issues around visual perception. And so if it means that we can offer information to professionals who are in turn then giving that to families and individuals, then we’ve also done something as well.
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But the information is critical in terms of the lack of understanding.

Dr Keir Yong (UCL Dementia Research Centre) and Dr Mary Pat Sullivan (Nipissing University in Canada) describe a study of PCA aiming to help people live better with the condition.

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