facilitating conversations about dementia with couples with a learning disability

Author

Dr Paula Jacobs

One reason often given for not including people with a learning disability and dementia in research is the anticipated difficulty with verbal communication. Additionally, sometimes people with a learning disability have not been told of their diagnosis of dementia. Thus, in most research studies that include people with a learning disability and dementia, researchers don’t actually mention the word dementia or ask people about it directly. For us, it was important to have more open and honest conversations using appropriate tools, and to be sure that couples knew about the diagnosis. We thought carefully about how to best facilitate those conversations to ensure they are accessible.

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exploring relationship journeys – what are we doing?
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As part of our advisory group, we routinely use visual aids to aid communication during and between meetings, and when summarising our work. This includes using a traffic light system to report if we are on time with tasks, and using photosymbols and easyread material to develop accessible agendas and minutes. When thinking about how to do our interviews with couples, we looked at existing tools and decided to draw on social stories and life stories to help develop our own visual images. We want to learn more about the story of each couple: how they met, response to their relationship, life together before the dementia diagnosis and what may have changed afterwards. After some discussion, we decided that it would be helpful to use a roadmap to visualise each relationship, with signposts of the past, present and future. The next step was to identify or develop images of people, individuals and couples, to explore different stages along the journey of each couple. However, we were concerned that many of the images we looked at might be too leading as people in them show certain emotions and this might influence the answers given. We decided to work with an artist to create our own images to reflect different stages relationships.

the created images
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There were a lot of factors to take into account and we understood that each situation will be different for participants. Sometimes we will speak to the partner with dementia, sometimes the partner without dementia and sometimes to the couple, so we needed to have some flexibility. We also had to plan for both online and face to face conversation. We decided that the couple in our images would not have facial expressions to avoid influencing people’s answers. It was also important to us that the couple in the images should reflect diversity in ethnicity and that the images could be used with people regardless of sexual preference. Lastly, it was important not to identify from the images which of the partners has dementia. We worked closely with the artist over several weeks and created seven images which we tested in the advisory group. 

how are we using the images and road map?
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We have printed and laminated the seven images as a postcard size. We have also printed the roadmap as a laminated A1 poster. This means that during our conversations with couples we can have the blank road map in front of us and then place as many of the images as the participant wishes, one by one, to explore the journey of each couple over time.  
You are probably asking the same question as we did initially – whether the lack of facial expression might be confusing to some people, we had lots of discussions about it! We explain to participants (and initially to our advisory group who tested them) why the people in the images don’t have any expression and that we would like them to tell us how they felt in each moment. We also have large laminated emotion faces with us during interviews if preferred, and we offer participants the option of us drawing expression on to the images during the session. For those who find the images too difficult to relate to, we also have an alternative series of photosymbols pictures that can be used instead.​