Living a good life with dementia
New methods of communicating with and entertaining people living with dementia have been developed through psychological research at St Andrews.
Dementia has long been stigmatised as an illness which makes people unreachable. Those living with dementia are often presumed to have withdrawn from life and are unable to communicate or interact with those they love. However, Dr Maggie Ellis, along with other psychologists at the University of St Andrews, have developed a range of different methods that allow people with dementia to express themselves. Their research has shown that far from being uninterested in life, those with dementia are still thriving and creative individuals who require unique and personalised ways to allow them to interact with the world.
The experience of dementia
Dementia is an umbrella term for a collection of symptoms caused by diseases of the brain. The condition is characterised by progressive loss of cognitive functions, including memory (particularly working memory), attention, planning and communication. Dementia most often occurs as a result of Alzheimer’s disease or stroke and is typically (thought not exclusively) diagnosed in older people (about 1 in 4 people over 80 have dementia in the UK). At present, dementia is irreversible.
As dementia progresses, the individual not only loses the ability to live independently, but progressively struggles to take part in conversations and previously enjoyed activities. People living with dementia can therefore often feel isolated and depressed, leading to a poor quality of life.
Dementia can also present a considerable challenge to family and professional carers. In particular, declining communication skills in the person with dementia can be challenging for caregivers who often misinterpret non-verbal communication as a loss of desire to be social. Family members and caregivers often regard people with dementia as “unreachable” and therefore detach themselves in order to cope with the demands of the situation.
However, it is a misconception that nothing can be done to help those with dementia. Researchers at the University of St Andrews have been investigating new methods of engaging and communicating with individuals living with dementia in order to help them maintain more independence and to live an enjoyable and active life. The St Andrews researchers have also developed tools and training to educate families and caregivers, while working to engage the community to fight the stigma associated with dementia.
About Maggie Ellis
Dr Maggie Ellis first encountered people with dementia as a volunteer for Alzheimer Scotland in Dundee while she was undertaking her first psychology degree at the University of Dundee. It was a life-changing experience that led to her securing a job as a research assistant on a dementia-related project at the University of St Andrews whilst also conducting her doctoral research part-time. She was awarded her PhD in 2009.
Maggie’s work is focused on applied dementia research, and in particular on facilitating communication for people with advanced dementia. She teaches both undergraduate and postgraduate courses at St Andrews on the psychology of dementia and the psychology of dementia care. She also provides training and consultancy for dementia care staff, families, charities and businesses.
“My main career ambition is to improve the lives of people living with dementia, their friends, families and caregivers via translational research.” – Dr Maggie Ellis
Communicating when speech is no longer possible
Individuals living with dementia experience a systematic loss of cognitive and communicative abilities. This can eventually make speech difficult and conversations hard to sustain. As such, those with a diagnosis increasingly rely on non-verbal forms of communication; however, these are often misunderstood or ignored.
Due to the significant communicative challenges that appear at later stages of the illness, individuals living with advanced dementia can easily become disconnected from those around them. It is often the case that such difficulties in communication are interpreted as a loss of the desire to participate socially with those around them. However, even when the ability to talk has gone altogether, people with dementia still retain and display the desire and ability to communicate non-verbally. Making use of retained non-verbal communication skills can help to maximise the communicative abilities of those with dementia and keep them engaged with the social world.
Intensive Interaction (II) was initially developed to facilitate communication between people who have profound and multiple learning disabilities. Intensive Interaction (II) is a non-verbal communication method which builds on the fundamentals of communication, including mirroring, turn-taking, sounds and movements.
The aim of the approach is to develop a shared ‘language’ between communication partners over time. There is little or no involvement of speech during interactions, and caregivers focus on learning the interaction partner’s communicative repertoire through observation and imitation. This approach has been successfully applied to other clinical populations such as congenitally deaf-blind individuals and people with severe autism.
However, Dr Ellis and her colleague, Professor Arlene Astell, were the first to apply the principles of Intensive Interaction (II) to communicate with an individual with advanced dementia: Edie, an 80-year-old lady living in a nursing home. They found that using these principles uncovered a nonverbal ‘language’ in Edie, including sounds, laughter, eye gaze, movement and facial expressions. For the first time in years, Edie was able to interact and take the lead in a ‘conversation’.
Dr Maggie Ellis explains the differences between Intensive and Adaptive interaction.
Dr Ellis and Professor Astell adapted Intensive Interaction to remove the focus on building a language over time as severe memory impairments meant that individuals with advanced dementia were unlikely to remember previous encounters. As such, Ellis and Astell’s approach relies on the communication partner, for example a caregiver, remaining ‘adaptive’ to the communication bids made by the person with dementia in the moment. (Thus the term ‘Adaptive Interaction’ was coined.)
In Adaptive Interaction, the caregiver makes spontaneous and subtle changes in light of actions presented by the person with dementia. For example, if the person with dementia taps their fingers on the table, caregivers might reflect the sound or rhythm of this to help the ‘conversation’ progress. The scenario becomes an engaging interaction for both the caregiver and the person with dementia, while also not exceeding the communicative ability of the person with dementia.
As well as being adaptive to changes as the interaction takes place, the caregiver must have the flexibility to start from scratch with the communicator each time, removing the need for the person with dementia to remember existing nonverbal cues from prior conversations.
Dr Maggie Ellis demonstrates Adaptive Interaction in action during an interview with STV News.
What sets this technique apart is the establishment of a control condition as a way of comparing the response elicited by Adaptive Interaction to one elicited by a ‘normal’ interaction between a caregiver and an individual with dementia.
In one study baseline sessions included routine-based questions like ‘Have you seen the weather today?’ and ‘Have you had breakfast?’ Such questions were asked as they mirror those that are typical of the questions asked by caregivers, and including this baseline allowed Dr Ellis and Professor Astell to provide a non-biased account of the effect of Adaptive Interaction whilst also ruling out any alternative explanations for the positive effect.
The study showed that the use of Adaptive Interaction resulted in an increase of communicative behaviour in individuals with advanced dementia in comparison to the baseline. For example, one participant in the study laughed a total of nine times in the Adaptive Interaction sessions and did not laugh at all in the baseline sessions. Adaptive Interaction research shows that individuals with advanced dementia who cannot speak retained the ability to interact via a variety of nonverbal techniques such as eye gaze, expressing emotion and various movements.
The research also shows that Adaptive Interaction has the potential to liberate people living with dementia who cannot speak through enabling a positive relationship between themselves and those who care for them. The study also highlights that there is a need for caregivers, friends and family to adapt their own communication methods to better connect with those with dementia. It is clear that they have both the desire and ability to communicate, and by adapting our methods of communicating, we can allow those with dementia to maintain their social identity.
Changing social attitudes towards Adaptive Interaction
Dr Ellis acknowledges that there has been criticism of her work, in that it could be viewed as infantilising. However, Dr Ellis strongly maintains that this is not what she is trying to do. Her approach is to work with the capacities that an individual has rather than the skills they no longer have. As such, Adaptive Interaction allows carers and family to ‘meet the person where they are’ in terms of their communicative abilities.
In the video below Dr Ellis shares her thoughts on how she would like to see social attitudes towards people living with advanced dementia change.
Training others to use Adaptive Interaction
Anyone who provides care to people living with dementia will know how demanding and challenging it can be to provide the appropriate standard of care while still being able to show compassion, kindness and motivation. While dementia may inhibit a person’s ability to communicate verbally, it does not remove their desire to communicate altogether. It is therefore essential for caregivers to look at nonverbal communication methods to ensure that those with dementia continue to be included in social interactions.
To address this problem, Dr Ellis and Professor Astell developed Dementia Gold, a skill-based training programme for people who work in a dementia caregiving environment. The fundamental principle of the programme was for people to treat others as they would like to be treated and was open to anyone who interacted with people living with dementia to get involved. Consisting of eight hands-on sessions, Dementia Gold looked at the different aspects of caregiving from communication to the care environment they live in, ultimately making positive changes to their environment.
In 2017 Dementia Gold evolved into Astellis, offering the first training courses on Adaptive Interaction. The certification programme includes introductory, intermediate and advanced training workshops for anyone who is interested in a better understanding of how to communicate with people with advanced dementia. From basic understandings to becoming a practitioner in Adaptive Interaction, the training varies from one-day to three-day residential courses and is offered to care homes, healthcare professionals and families with members living with dementia. In addition to the training course, Dr Ellis and Professor Astell released a companion book, Adaptive Interaction and Dementia, in 2017. The book offers a person-centred approached on how to communicate with people who are unable to speak due to dementia. It also presents evidence-based methods for effective non-verbal communication.
The main thing I learned was that nonverbal communication is far more beneficial to a lot of our clients than trying to communicate verbally.
Once I was able to connect with my mum it was like she couldn’t communicate enough.
Those who complete an Astellis training course gain the ability to critically examine the barriers and obstacles faced by those with advanced dementia and make substantial differences to improve the quality of life for those living with it. They are also able to pass on their knowledge and skills to colleagues and family members to ensure that nobody is being excluded from communicating.
Conversing with computers
Caregivers have a difficult task of providing constant attention, conversation and amusement for people living with dementia. Dr Ellis and Professor Astell looked at how technology could be utilised to ease some of the burden placed on caregivers, and to facilitate new ways for those with dementia to become more engaged in the social world.
Working with computer scientists and design experts at the University of Dundee, the team developed a series of multimedia tools in collaboration with professional caregivers and people with dementia.
Virtual environments and activities
The team first developed a series of virtual environments which could be explored by using a touchscreen computer. The virtual environments were created using photographs combined digitally to make a realistic 3D setting, for instance a botanic garden where users could ‘move around’ and activate short videos of fish swimming or bees buzzing around a flower. Other environments were entirely artificial, such as an old-fashioned pub with bar, customers and furniture.
After evaluating the virtual environments, the team created a series of virtual activities and games. Some examples of activities included walking dogs along a beach, painting a pot or blowing bubbles. The games included arcade games (like pinball or slot machines), fairground games (like shooting galleries or coconut shy), and sport (like crazy golf or ten-pin bowling). Through testing, the team discovered that familiar activities with a clear and present goal worked best.
The team also wanted to find out what level of prompting was necessary to ensure those with dementia could use the technology independently. They found that a well-designed interface along with occasional text-box prompts was sufficient to ensure success (spoken prompts or an onscreen avatar were deemed unnecessary and distracting).
Those with dementia live with depleted working and short-term autobiographical memory and find it easier to talk about past events which are relatively well saved in their long-term memory. Without working memory, conversation becomes very difficult with someone with dementia and puts a severe strain on family and carers who feel they need to guide and control all conversations.
The team developed a system called CIRCA (Computer Interactive Reminiscence and Conversation Aid) which presents users with a wide choice of video clips, music clips and photographs designed to trigger long-term memories and stimulate conversation. The media images and clips are presented on a touchscreen computer, allowing people with dementia to determine the pace of the conversation and which material to view.
After testing the system at a care home, the team found that generic photographs promoted more positive social interactions than personal photographs, as people with dementia were not always able to identify people in the personal photographs. The team iteratively improved the design by adding more content, including a randomising feature to make each session unique.
CIRCA allows people with dementia to take more control over interactions and to engage equally with their caregivers. It also allows caregivers to relax and not have to be concerned about continually supporting the conversation.
Since launching CIRCA as a commercial product in 2009, it has been installed in 46 NHS, third sector and private care organisations.
“[CIRCA] helped to restore a sense of dignity and respect to some of our frailest people. They are able to interact more confidently with their loved ones and staff as past experiences and memories are un-locked. It is heartening to observe what appears to be an improvement in self-confidence after sessions with the system.” – Unit manager of a residential care home
Dementia Friendly St Andrews
Dementia is likely to affect us all in some form during our lives, and Dr Ellis is passionate in ensuring that people with a diagnosis do not find themselves cut off from their community. Dementia Friendly St Andrews is a non-profit organisation set up by Dr Ellis in 2016 to build a dementia-friendly town. The initiative brings together all members of the community from businesses, organisations, schools and public-sector workers who receive training in recognising and interacting with people with dementia.
Research has shown that there are real benefits to a person living with dementia who is still included in the social world. Dementia Friendly St Andrews tries to educate the local community on identifying these potential moments through specialist training devised by Dr Ellis.
The Thumbs Up campaign encourages the St Andrews community to show their support of creating a dementia-friendly community by taking a picture of themselves with their thumbs up. The only requirement of the photo is for it to be shot in front of a wall, symbolising the barriers and frustrations that people living with dementia and their families face daily. The campaign is simple yet effective and has received widespread support from many St Andrews businesses, local politicians, the University and leading Alzheimer scientist Baroness Susan Greenfield.
Dementia Friendly St Andrews is run entirely by volunteers and relies on donations from the public to run the service. The initiative is also supported by the Dementia Friendly St Andrews society who are a group of University students who fundraise and raise awareness of the group by holding events such as vintage fashion shows and open mic nights. Volunteers in both groups have a wide range of experiences and skills and are always looking for new people to join them in making a difference.
Dementia Friendly St Andrews thumbs-up campaign
One of the things that makes working at St Andrews special for Dr Ellis is the ability to collaborate with her colleagues in the School of Psychology and Neuroscience. Researchers working in different subject areas, or in the same subject area but from a different angle, can bring their skills and knowledge together to work on the same project together.
For the next stage in her research, Dr Ellis is working with Dr Gayle Doherty, a neuroscientist at the University. Together they will be looking at the physiological responses of people with dementia and their caregivers to Adaptive Interaction with specific attention on the stress hormone, cortisol.
Dr Ellis shares her plans for future research on Adaptive Interaction.
As the population continues to age, dementia is increasingly becoming a prominent healthcare issue. Until medical advances make stopping or reversing the onset of dementia possible, we need to focus on how to continually improve the lives of those affected by it.
Dr Ellis’s research into using new methods, techniques, and technology to help those with dementia communicate, learn and be creative has already helped those living with dementia have a better quality of life. Their carers and family members have also been given the education to help continue interacting with those living with dementia in a meaningful and mutually beneficial way. More than that, community outreach programmes, such as Dementia Friendly St Andrews, have helped erase the stigma around dementia and created more understanding and awareness of its symptoms and effects.