Impact case study database

Ellis and Astell’s research on Adaptive Interaction has affected practice in care for those with advanced dementia. It has changed practices within NHS, local authority and private care facilities, and been incorporated into the practice guidelines for advanced dementia and end of life care produced by Alzheimer Scotland. The research has changed public opinion about the communicative abilities of those with advanced dementia and had a profound effect not only on those living with advanced dementia but also their family members and carers.

Context for impact: Lack of social support for advanced dementia

At present, there is no cure for dementia and no effective treatments for the disorder once it has been diagnosed. In particular, very little specific care is aimed at those with advanced dementia as they are thought to be unable to communicate and have no chance of recovery. Ultimately, people with advanced dementia experience care that addresses only their physical needs, overlooking a significant unrealised need for social connection. Scottish Care estimates that between 12,000 and 15,000 people with advanced dementia are currently living in Scottish care homes. Given that people can survive in this condition for many years, it is clear that there is an urgent need to provide specialised care and social support for people with advanced dementia and their families. Ellis and Astell’s research on Adaptive Interaction addresses this need.

Changing practice in care facilities

Adaptive Interaction is based on carers using the residual communicative abilities of those with advanced dementia who have lost the ability to speak. This includes imitation of vocalisations and movements. As such, this requires training and practice to help carers identify and imitate intentional communicative acts making Adaptive Interaction training time and resource consuming. Consequently, Ellis, Astell and collaborators have taken a “train the trainers” approach with two aims: firstly, to demonstrate the profound effect of Adaptive Interaction both on carers and those living with dementia in multiple care settings including the NHS, local authority and private care facilities (both in the UK and abroad); and secondly, through giving workshops to train carers in Adaptive Interaction to enable them to take the technique back to their care facility and teach other carers. Both of these aims have been achieved. Since 2013, the training has been given to 252 people (carers) from 10 care facilities, including NHS and private organisations across Scotland, the UK, and internationally. An example of how the training is then cascaded through organisations is given by Education Co-ordinator/Trainer at Salisbury NHS Foundation Trust who states “All our dementia/delirium link role nurses and departmental staff are sent the [Adaptive Interaction] research video…. as a mandatory part of their training for the role. They have a responsibility to cascade information and access to training to all members of the team on their ward or department.” (S1). The effects of Adaptive Interaction have been shown to be transformative for carers and patients as detailed below.

Ellis and Astell’s research shows the value of Adaptive Interaction to those living with advanced dementia (R1, R2). However, the success of Adaptive Interaction goes well beyond the effect on those individuals having a profound effect on carers and families. Firstly, it affects attitudes of carers trained in the workshops. Interviews and feedback following Adaptive Interaction training showed a change in care staff attitudes and behaviour towards individuals with advanced dementia. Changes included an increase in interpretation of behaviour as communicative in nature which is key as this provides positive feedback for the carers’ efforts for further interaction (S2). A carer from a Care Home in Glenrothes stated, “I found that [Adaptive Interaction] AI brought something out of the clients that was hidden. Even if it was only blinking an eye, it was blinking an eye in response to something that we had done. Before, we wouldn’t recognise it but with the AI training we realised that it was a response to us… Using this technique, I felt that I got something out of the residents that made my job easier.” (S2) These types of responses were common and following training at an NHS workshop in 2018 (NHS Salisbury) participants were asked after the event how confident they now felt communicating with someone with dementia and the mean response was 7.77 (median 8) on a scale from 1 (Not confident) to 9 (Very confident) (S3). Secondly, the changes in those living with dementia that result from Adaptive Interaction affect their families. The significance of the changes brought about by the adoption of Adaptive Interaction is evident in letters from the families of those with dementia. One family notes the effectiveness of Adaptive Interaction: “I saw my mum smile, laugh and connect with Dr Ellis in a way I hadn’t seen her do with anyone other than myself in years”. (S4, p. 3) Another family member, using the technique with her mother, writes : “I kissed her on her forehead and she opened her eyes, lifted my hand to her mouth and kissed it three or four times. My brother nearly fell off his chair”. (S4, p. 2)

These examples provide compelling evidence that practitioners and patient relatives’ experience of communication is improved by Adaptive Interaction. Recent work in collaboration with Computer Scientists at the University of St Andrews validates this improvement by showing that an artificial intelligence-based machine learning approach can detect improved non-verbal communication with 97% accuracy (R4). This provides an objective bias free measure of the improvement in communication following Adaptive Interaction training.

Alzheimer’s Society commissions Adaptive Interaction masterclass

In 2016, Astell and Ellis were commissioned by the Alzheimer’s Society, the UK’s leading dementia charity, to develop a one-day masterclass (training the professional trainers) in Adaptive Interaction as part of their communication learning pathway to be delivered by their most experienced lead trainers to those responsible for service delivery. Those trained are now delivering one-day regional courses for volunteers across the UK. The Organisational Development Manager of the Alzheimer's Society estimates the scope of the training to be ‘2000 paid workers and 6000 [people] volunteers’ (S5). This commission resulted in the development of a dementia care training business ‘Astellis’ in 2017. The company delivered its first training programme in 2019 to NHS Speech and Language Therapists in Leeds. The company was recognised for demonstrating social impact by the Converge Impact Challenge which helps the most innovative and creative thinkers from academia to realise their entrepreneurial ambitions. Astellis was 1 of 5 finalists for their impact award in 2019 from a field of 44 companies.

Changes to Alzheimer care guidelines in Scotland

Dr Ellis was included in the consultation process for the Advanced Dementia Practice Model, the guidelines for dementia practice from the national body, Alzheimer Scotland. As the CEO of Alzheimer Scotland explains, “This important document provides the key to delivering people with advanced dementia and their families with the right to the best possible life and end of life care.” (S6). As a result of this consultation, Adaptive Interaction was included in the Advanced Dementia Practice Model from 2015 (S7; the Model cites an Adaptive Interaction practice handbook which itself cites R1). Alzheimer Scotland has wide reach with 66,800 people (subscribers), all of whom received a copy of the 2015 Model. This has produced sustained interest evidenced by 1,393 visits to the webpage since August 2019. The guide is used by Care Professionals to inform best practice. As an example, a Lecturer in Care at Dundee College said: “I regularly use the Alzheimer Scotland Advanced Practice Model in my working life to maintain knowledge of standards of excellent practice…. Dr Ellis’s contribution to advanced dementia care is changing how people with the condition are regarded for the better” (S8). Care places a considerable strain on carers and family. While not eliminating Alzheimer’s disease, Adaptive Interaction can provide human connection for those living with advanced dementia. As noted by the CEO of Scottish Care Ellis and Astell’s research “ helps to build a bridge between our world of verbal communication and the world of individuals with dementia which is traditionally been a bridge that hasn’t existed” (S9). By supporting communication, Adaptive Interaction increases the wellbeing of those diagnosed (R1-R3) and the satisfaction of caregivers, including family (S2&S4). The Organisational Development manager of the Alzheimer's Society Manager writes, “ This has proven invaluable in providing people with advanced dementia, care staff and family members with the means of engaging in mutually meaningful interaction without the need for speech. Such interactions have a positive impact on the quality of life for all concerned.” (S5)

Changing public opinion of communicative abilities of those with advanced dementia

A critical aspect of Adaptive Interaction is educating the public about the capabilities preserved in people with advanced dementia and their desire to communicate (despite loss of language production and comprehension). Ellis and Astell’s work has changed public opinion through a variety of public engagement activities. These have included sustained engagement consisting of interviews on national media (STV news in 2014 (S10)) multiple public lectures each year since 2014 across Scotland and the UK, talks to carers’ groups (National Dementia Carers Action Network, 2015) and keynote addresses to professionals (NHS Gloucester, NHS Salisbury, 2018). As an example, the Chief Executive of Alzheimer Scotland, who acted as Chair for a public lecture, notes that “[he] was extremely well attended and received and drew much-needed public attention to the communicative issues faced by individuals with advanced dementia and their caregivers.” (S6). Further evidence of change in public opinion can be seen in the feedback to these events. Specific feedback demonstrating a change in opinion included surprise that “ advanced dementia patients are communicating! Important to communicate back” and “ That any non-verbal behaviour is probably a means of communicating and that very disabled people’s lives could be given some meaning”. It was noted “ That I can communicate with someone with dementia. It is possible to ‘reach them’ if I take the time”. Also, that “ Realising that apparently random acts may be an attempt at communication is a bit revolutionary for me” (S3, selected quotes). Finally, the importance of Adaptive Interaction was noted, “ Basic human communication and the need is the last thing to go. Using Adaptive Interaction can maintain the sense of being alive for a person with dementia” (S3). Further public engagement has been facilitated by Ellis and Astell’s Adaptive Interaction research being featured prominently on the website of the Social Care Institute for Excellence (SCIE (S11)). The SCIE is an independent agency operating at both policy and practice levels to contribute to the development and implementation of better care, support and safeguarding at national and local levels. SCIE clients include care and health providers, local authorities, housing associations and government departments. Ellis’s content on advanced dementia receives on average 1,000 views per month.

Ellis and Astell published a book, aimed at public and professionals alike which is a guide to Adaptive Interaction explaining how to assess the communication repertoires of people with dementia who can no longer speak. The book offers practical interventions for those who wish to interact with those with advanced dementia (R4). The book has received acclaim from relevant leading professionals including the Organisational Development Manager of the Alzheimer’s Society (S12, p. 2) and the Chief Executive of Alzheimer Scotland who says: “ *The text enhances our ability and skills in such a way as to ensure we treat the person living with dementia as an equal and valued citizen engaged with the world and people around them in a truly meaningful way.*” (S12, p. 2).

In recognition of her work on Adaptive Interaction, Ellis was voted as one of the UK’s top 100 Lifesavers as part of the MadeAtUni campaign in 2019. MadeAtUni is a new campaign from Universities UK to bring to life the impact of universities up and down the country on people, lives and communities ( https://madeatuni.org.uk/university-st-andrews/new-technique-help-dementia-patients-communicate). The Nation's Lifesavers are the top 100 individuals or groups based in universities across the country whose work is saving lives and making a life-changing difference to our health and wellbeing. This award serves to recognise the importance of Ellis’ work on improving the lives of those with advanced dementia.