Dementia Care 2.0 – Reflections on Day 1 IDC 2015

You are thinking I will be talking about dementia and technology, right? But I am not. This will be in my reflections on day 2, as I will be attending a session about it and have a look round the Careshow to find out more about products currently on offer.

But these are my reflections on the first day of the International Dementia Conference 2015, which I will be attending today and tomorrow. I called this Dementia Care 2.0 as I think a paradigm change is just taking place. Person centered care, psychological interventions and carer support feature heavy in many presentations. And even though there is still a call that the impact of these needs to be more methodically studied, best practice models developed and the impact made comparable, I feel that the overall impact of those interventions is already accepted.

The opinion that people living with dementia need to be heard, that their expert experience matters and that we need to find ways to make this happen more regularly has also been expressed throughout the day. In the monring introductory talks 20 minutes have been given to “My own way: Person with dementia / carer discussion” and one breakout session called “Understanding people with dementia” have been scheduled. The morning session gave first hand experience from people who both care for a close family member and engage in dementia signposting. Issues discussed have been around access to diagnosis and the access to information that is enabled by this. One question I found particularly interesting is the question whether doctors should be allowed to breach confidentiality to discuss the possible illness with familiy members to advice and prepare family members better. I think this is a point where different stakeholders are involved whose goals and interests collide and I hope a stronger discussion evolves around it. It is related to the issue around privacy and safeguarding that will play a part in my research project.

In the “Understanding people with dementia” session two talks stood out to me. Under the lead of Patricia Bluteau from Coventry University a team presented the insights into “Creating empathic understanding through simulation; for professional students”. In their study an Oculus Rift programme has been developed to help health professional students understand what living with dementia is like. This programme mimicks everyday life and sets everyday tasks, but overlays noise and distortion to help people live through the emotions people with dementia might develop. A ‘talking out loud’ protocol was used to get qualitative data of how people experienced this. Results are highly interesting both showing that people felt more confident after using this system, but also in showing that people felt the need to learn more. I think design students can benefit from this as well and find the approach interesting. The main concern I had about the talk was that they discussed the ‘authenticity’ of this programme, which might be unable to quantify. I don’t want to focus on this too much, particularly as I think the qualitative results of this study really promising to create a connection, even though the actual experience might be different, but this is just one point of my concern.
The second talk I want to mention was by Tiwaola Kolapo who presented the initial research for her PhD about “Commisioning culturally competent care in dementia” which is based on her experience as a commisioner.  This talk gave insight into the system of commisioning, but it also make a convincing point for a deeper individual care. According to Kolapo ‘cultural competence’ relates to the ‘expressed needs of an individual in relation to their social setting and self’. It falls exactly into the category of ‘Dementia Care 2.0’ to me, as it accepts that dementia care it about individual solutions, but asks further how this can be embedded into the existing system.

The session on Design & Dementia showed the laudable approach to bridge academia and practice by inviting speakers from professional backgrounds. There will be more sessions on this topic tomorrow which I may be unable to attend as others look more promising, but this topic features heavily within this conference. The conference is also connected to the Care Show, a trade show about dementia which I am going to explore tomorrow in regards to technology.
The talk that stood out to me from this session has been by Damien Utton about “Designing dementia care environments: the Japanese experience.” By introducing three case studies from Japan differences in Dementia Care between the UK and Japan have been highlighted. One re-occuring theme of this talk has been the health & safety culture in the UK that might stand in the way of developing innovative and maybe more ‘homely’ services. Another relevant point to me has been the inclusive nature of Japanese examples which nearly all featured restaurants and child care open to a general public or housed other groups such as college students as well. One outstanding feature for me was a case study of a place which developed ‘like a village’. The makers of the home did not only accept a certain indivduality which they felt mirrored a home, but also build in stress point such as stairs to enforce cooperation and contact. I am not sure how comparable this would be to our culture, but I found the thought intriguing.

The morning session “News from the researcher” by Professor Sube Banerjee has been very entertaining and gave interesting insights about the issues around dementia research. He emphasised that dementia does not fall into the catgories in which we normally research, but touches on many categories. He discussed that the academic interest in research has risen, but that researchers might need to challenge some of their assumptions around dementia. He gave the example of depression, which might have different triggers than other types of depression – or might not even be depression at all.

This was a short overview of the insight I take away from the day. This is the account “close to th heart”, shortly after the event, so it is most likely not accurate, but more to be seen as an indicator. And, I want to add some even more personal thoughts, based on observations duiring the day. When I am at an event I always turn around and have a look at the crowd as well as looking at the main act. During this at the conference has led to some thoughts I want to share here. Firstly, I feel that there is still quite a strong gap between different disciplines. I felt a divide between people engaged in day to day care and people in research / design and a certain suspicion about ‘the other’. This is a completely personal experience but I will observe as well tomorrow to see whether I can validate this in any way.
Even though design plays a large part within this conference, there is so far little evidence of a deeper academic design approach. Issues of co-design or design methods have not been mentioned at all, which I fear underlines a more general issue in design research and the impact it has outside academia. Again, personal observation, most likely with personal resentiments.
My poster got some attention, but the overall setting makes interaction complicated during this conference. The situation has been best described by a visitor of the CareShow – where the posters are presented – who said: I am trying to find the thread that links all this together. Not only at this conference, but also more generally, people seem to struggle to see the Big Picture. Even though interesting work does stand out.

And with these thoughts, I am going to call it a day and prepare for day 2. More to follow, I try to keep you updated.

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One thought on “Dementia Care 2.0 – Reflections on Day 1 IDC 2015

  1. Interested to read that there was a discussion about doctors breaching patient confidentiality. When my mum was showing signs of early onset AD, the medical professionals wouldn’t listen to us when we told them (not in the presence of my mum) that we were certain that she had AD as her sister and father both had it in their 40’s and that it was likely the rare genetic form. She was diagnosed with ‘anxiety and short term memory loss’ for five years and only diagnosed with AD a few months before she was sectioned. I have spoken to my own GP surgery (PS1 mutation was confirmed in my mum) and they have allowed me to give them a signed letter giving them permission to listen to and act on information from named relatives and my best friend should they contact my GP with concerns about me showing signs. I like to think that I would notice the signs myself but that might not be the case. I have also included in the letter my wish to be immediately refered to the DRC at UCL if my family or I think that I’m showing signs and not refered to the local memory clinic.

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