Dr Maggie Ellis of the School of Psychology and Neuroscience at the University of St Andrews has been recognised in the 2022 New Year Honours list for services to Dementia Care and to the community in St Andrews. In an interview held with The Saint, Dr Ellis discussed her research. When asked what drew her to this topic, she noted that it was somewhat accidental. “I was an undergrad at Dundee and was hell bent on becoming a clinical psychologist, as many psychology students are. I knew that I would need to get some volunteer work on my CV and, when I spoke to a friend of mine who is a social worker, she suggested Alzheimer Scotland. They used to run a day care service in Whitfield Parish church in Dundee. “I had other options, but I thought I would give this a try. So I went along to the day care service, and I loved it instantly. I loved interacting with people with dementia. I loved being involved and I very quickly changed my mind about where I wanted my career to go.
“I went from wanting to be a clinical psychologist to then wanting to do dementia research, specifically communication research with people with dementia. That experience was something that I would recommend to anyone who is interested in working with a particular group of people. Go and volunteer, see what it’s like. I absolutely fell in love with dementia research at that point, so that’s where it all began.” When asked about the misconceptions surrounding dementia, Dr Ellis acknowledged that misunderstandings do exist. “People will often talk to the person’s partner or family members rather than talk to them. People can also assume that the person is not going to remember anything, but people do remember. They may remember things from their recent past, sometimes they don’t. It’s very different for everyone. “There’s a huge misconception that people with dementia are childlike. This can cause us to act in a way that detracts from the personhood of the individual with dementia. There’s lots of work to be done in terms of attitudes towards people with dementia. I do some research on that as well as communication, because the attitude that we have towards the person with dementia dictates our behaviour towards the person and how we treat them.” Dr Ellis has done research on what is called adaptive interaction, a technique which focusses on developing meaningful ways to communicate with people with advanced dementia. “If people with dementia reach a stage in which they can no longer talk or understand speech, it is very easy for us to then assume that there is no understanding nor desire to communicate. Our research, that of me and Professor Arlene Astell, has tapped into retained communication skills in people with advanced dementia that are not related to language. This involves engagement in what’s called repetitive action. They may reach a stage in which they are rocking backwards and forwards, or they may have a hand movement that they repeat over and over, or they may pick up the clothes, or they may tap things. Often these actions are regarded by us as just sort of meaningless and random. “But what we have found is that, if we assume that these actions are meaningful to the person and part of their communicative repertoire, and therefore use those actions to interact with the person, we can access a non-verbal repertoire with them. We can build up interaction around the person’s existing actions rather than trying to draw them back into our speaking world. “With this sort of interaction, we have to accept that there won’t necessarily be any sort of information exchange. For example, if we try Adaptive Interaction with someone and they are engaging with us, it doesn’t mean that we are doing so to try and find out what they want for lunch. That’s not going to happen, but we can have a connection with another individual and allow them to re-enter into some sort of social world that they’ve been excluded from. It’s recognising the actions they have remaining as their way of communicating.” In 2016, Dr Maggie Ellis set up the charity Dementia Friendly St Andrews. Its aims are to raise awareness about dementia in the local area, to provide training to businesses and services who may encounter individuals with dementia. The idea also started in order to raise funds to provide activities for people with dementia and their family members. “We raised funds so that we were able to put on Dementia Activities Week during Dementia Awareness Week. It was in 2018 and we had a different activity every day in the Byre Theatre for people with dementia and their family members. We were also able to fund a play called Curious Shoes, an interactive performance designed for people with dementia.” On how the funds were raised, Dr Ellis said, “I want to be clear that these funds were raised in conjunction with students, university staff and local activists. Residential and Business Services at the University made Dementia Friendly St Andrews their charity for two years and raised an impressive amount for us. Students set up a student society branch alongside Dementia Friendly St Andrews. They put on fund-raising events like fashion shows and open mic nights. The activists and local people were key to all of this happening. Local activists raised funds in memory of a loved one. They really made a huge impact.” In 2020, Dementia Friendly Fife was funded by Fife Health and Social Partnership. Since then, Dementia Friendly St Andrews has sat under the umbrella of Dementia Friendly Fife and the training has since been adopted by Project Manager Ruth McCabe. Whilst Dementia Friendly St Andrews is still ongoing, Dr Ellis said, “My main focus now is getting Adaptive Interaction out there and giving people an opportunity to connect with their family members and their professional carers when they are no longer verbal.”
Dr Ellis hopes to focus on training teenage grandchildren of people with advanced dementia. She offers free training for family members on Adaptive Interaction through Age UK. Normally, these family members are partners or adult children. “What I’ve heard time and time again is that teenage grandchildren stop visiting because they don’t want to see their grandparents like that, and they don’t know how to interact. To me the next logical step is helping grandchildren to reconnect with their grandparents. I think it's important to allow them to connect and feel that they're playing a part as well. Obviously the training will have to be couched in a slightly different way for that age group. I think it will be hugely challenging training teenagers to engage in this sort of communication, but I’m really excited about trying.”
When asked about her long-term vision for dementia research and Adaptive Interaction Dr Ellis said, “We were recently funded for a project evaluating Adaptive Interaction in comparison with regular care and for care homes in Scotland. But we haven't been able to spend that money for two years now because we’re not allowed into care homes to do research due to Covid-19. That was part of our big plan, to develop it from there, to write a paper on that and report findings. “But we’re kind of at a standstill in terms of hands-on projects at the moment, so we have a new idea. The new idea, which seems to be working quite well so far, is providing training online for professional caregivers and family members. This is through Age UK. And since we started offering online, the uptake has been much larger because you don't have to get everyone in the same place or in the same building. You can do it from anywhere. So being forced online has had some pluses in terms of being able to reach more people. It’s not easy to do online because it is more difficult to see the impacts of what you’re doing, but it’s possible. “We also have a training business called Astellis where we train professional carers how to use Adaptive Interaction. And we're about to start hands-on training again with that in the summer if restrictions lift the way they have been doing.” In terms of her long-term goal, Dr Ellis said, “I would like all caregivers, all professional carers and family members, to be able to access training and Adaptive Interaction. This would be my life’s ambition.” On how to get involved, Dr Ellis is keen for a student society to get up and running once more. “There was a student society running for about three years. I don't think it's run for the past two years again due to COVID-19, but if anyone would be interested in starting up dementia friendly St Andrews Student Society again, I’d be more than happy to feed into that and design projects and fund-raising events. We did some great fundraising events. The first student run event we had was a vintage fashion show called ‘Wardrobe Stories’. We asked people in the local area to give us a piece of clothing that one of the students could model and to give us a story along with that piece of clothing so that when the student was walking up the catwalk the story could be read out. “It was hugely successful. It was great. We had one lady who gave us a whole collection. Her husband at that time had dementia and she was very interested in taking part. She gave us a whole collection of her ball gowns and her husband's RAF and outfit. It was just superb. So, I'd be more than happy for this student society to start up again and I'd be delighted to work with them.” Dr Ellis said that she wished to thank everyone who has been involved in Dementia Friendly St Andrews: Local people, university staff students, as well as everyone who has taken part in her research. “Everything you do is recognised and does not go unnoticed. I am thankful for all the participation of everyone who has ever taken part. Especially people with advanced dementia.”
Image: Dr Maggie Ellis MBE