Over the past year we have been working on the research and design of an exciting new project related to dementia care.
Most recently this involved spending two weeks speaking to people with dementia and their carers in their homes. We wanted to understand their experiences with dementia and explore their reactions to initial prototypes for the project.
When we began to prepare our research, we were told about the challenges of working with people with dementia. The cognitive difficulties associated with the condition mean that they are some of the most vulnerable adults in the UK population. But sometimes, we found that a cautious approach to working with people with dementia - while undeniably important - can sometimes set a tone that is patronising and even dehumanising.
People with dementia crave the respect, dignity, compassion and humour that we all seek in our daily interactions with others. Their personal stories are too important to be obscured by clinical language and medicalisation. It’s just that the modes of engagement that they are most comfortable with tend to shift, and this difference is something that must be acknowledged with sensitivity and compassion.
During our research we learnt how to consider these different modes of engagement. Here are some of the things we discovered along the way:
Be sensitive with language. When we first began speaking to people with dementia and their carers, it immediately became clear that language should be carefully chosen. The word ‘dementia’, for example, can be upsetting; beyond stigmatised connotations it can remind someone who has forgotten about their dementia or disturb someone in denial. Equally, terms like ‘iPad’ can be meaningless for an 80 year old with memory difficulties. Gaby*, for instance, a sprightly octogenarian, did not understand the word ‘playlist’ but was immediately captured by a description of creating ‘a list of your favorite songs’.
Be direct. Abstract sentences and ideas are especially difficult for a person with dementia to understand. As Babette and Sarah explained to me, Sarah with early stage dementia used to have a vivid imagination, but now struggles to hold in her mind concepts described without tangible examples. She preferred explicit prompts that gave her something to react to; being asked how she feels about a specific reference point instead of questions that are open-ended and demand free recall. Similarly, throughout each conversation we introduced simple reminders of the subject, the purpose and the people involved to root each moment of our time together.
Be visual. Another way of being direct is to be visual. As soon as we showed images, instead of just words, to people with dementia we were able to more immediately communicate ideas and understand from them how they felt. With most of our conversation focused on reactions to a prototype, the screens we asked people to swipe through were just as much a useful research tool that brought to life the discussion and brought together everyone involved. The graphics we shared were simple, bright and colourful. Rachel, who cares for her mum, described how these appealed to the need for a tone that is positive and a message that is clear.
Break information down into small chunks. Presenting one single message at a time also grounded conversations. This applied to words and images. When I shared with Paul and his wife and carer Christina a seemingly simple screen (it included a question, a 10-point scale represented by numbers in circles, a smiley face at each end to show the extremes, and a ‘Next’ button) Paul was bemused by what to him was an abundance of potentially interactive stimuli, not knowing which element to respond to. On the other hand, Paul immediately grasped the screens with a single image and a simple sentence.
Follow conversations at their pace, on their own terms. For some people with dementia it might take time to think, respond and find the right way to express what it is they want to say. For others, a single word might spark off a tangent they feel compelled to pursue. Either way, staying at their pace, following the tangents, and allowing the conversation to flow along their terms helped to make them feel comfortable, respected and more confident to be involved. Amongst the people with earlier stages of dementia whom we spoke with, there seemed to be a shyness in speaking up, as if they were ashamed of the difficulties they now experienced and the label they lived under. Beginning a conversation at people’s pace, with their interests and concerns at the forefront, continually directing questions first to them and bringing them into the discussion - all felt necessary to give the reassurance they quietly called for.
Be mindful of body language. As researchers, we were constantly conscious of the way each participant - including ourselves - were physically positioned during the conversation. We sat facing the person with dementia in a way that was inviting and open; maintaining eye contact and encouraging smiles, without putting heads down too often to make notes, our outfits simple and plain - no patterns or colours that could distract. We asked for the person with dementia to sit close to the carer as they would naturally do, to ensure they felt supported and help us observe how they interacted together. We took note of small moments when almost without thinking carers placed their hand on their loved one’s arm, and we followed the person with dementia when they stood up to move around on a whim or point out an object important to them.
Go to people’s everyday context. All of our conversations took place at people’s homes. This was where they felt most themselves, where they were be surrounded by things that are meaningful to them, and by the pictures, the games, the books and albums that families used to support care on a daily basis. All of which told us a story about their personal experience of caring for dementia, and how a new digital intervention could fit within this space. Alice, an 89 year old with dementia, proudly pointed towards the paintings on the wall that she had created over the years to show me how much she loved to do art. Sharon, who cares for her mum Gaby, showed me a box of classic musical DVDs that sparks off their singalongs and a book where she’s gathered together the poems and songs they recite together.
Be generous with attention. Most of all it was clear that people with dementia want to feel in control, stimulated, creative; given attention but not looked down on. The small tips described here all went some way towards enabling this in a research encounter, gently crafting an environment that was fully inclusive.
In many ways the learnings here could be applied to doing research, creating designs and communicating with anyone - not just people with dementia. Like universal design, where you design for extreme users, but basically make something easy for everyone, engaging with people with dementia embraces an approach that is mindful, clear and compassionate at every step.
If you want to learn more about the work we’ve described here do get in touch on email at email@example.com or over Twitter @sp_and_ee.
* all names have been anonymised