Published: 10 November 2020
Understanding communication problems in dementia
Dementia is a condition which causes a number of communication problems, including forgetfulness, misinterpretation, problems understanding and difficulty controlling emotions.
It is estimated that more than 850,000 people in the UK are living with dementia, and those with the condition are more likely to be admitted to hospital than those without dementia. Around one quarter of hospital beds are occupied by patients with dementia and their difficulties with communication can make treating the condition for which they were admitted more challenging. In many cases these problems are made worse by admission to hospital because they are unsettled by the change of environment, illness and seeing unfamiliar faces.
Despite the prevalence of patients with dementia in emergency hospital settings, most acute hospital healthcare professionals have received little or no dementia-specific training to help them communicate effectively and lack confidence in caring for them.
The NIHR recognised the potential benefit of appropriate dementia-specific training for healthcare professionals and, through its Health Services and Delivery Research (HS&DR) Programme, funded the VOICE (VideOing to Improve Communication Education) study to evaluate and deliver a new training programme.
Led by Professor Rowan Harwood at the University of Nottingham, the VOICE study has shown promising results that evidence-based communication skills training for health professionals can improve their communication with patients with dementia.
Developing a new approach to training
The NIHR had previously funded an evaluation into how effective the Medical and Mental Health Units were for patients with dementia. This gave insight into specific areas of care needing research, which led to the development of the VOICE study.
NIHR researchers began with a review of the literature to identify the different methods used for communication skills training. They then analysed video of conversations between healthcare professionals and hospital patients with dementia to identify successful and problematic communication. It was clear there were particular difficulties in communication, including making requests and ending conversations with people with dementia. They also found strategies that successfully avoided these problems, such as trying to make a task sound easier and ending conversations with clear language, rather than “see you later”.
Professor Rowan Harwood, Consultant geriatrician and Professor of geriatric medicine at Nottingham University Hospitals NHS Trust, said: “There is a general assumption that communication comes naturally. When caring for patients with dementia, healthcare professionals find that a lot of the communication rules in everyday life don’t fit. Dementia requires specific and particular skills, and these are teachable skills that we have incorporated into the training course.”
The VOICE study went on to design a new approach to training healthcare professionals, focused on learning through simulated exercises in which actors trained in issues around dementia communication took on the roles of patients. Developed with the advice of carers of people living with dementia, communication and educational experts and clinicians experienced in the care of people with dementia, the training was tailored to be acceptable to healthcare professionals, patients and their carers alike.
A series of two-day training courses were then held as part of the study, and were attended by 45 healthcare professionals, including doctors, nurses and therapists, who regularly worked with people living with dementia. The success of the training was evaluated by assessing the healthcare participants’ confidence, knowledge and communication skills before and after the course. Participants reported overwhelmingly positive benefits.
“I thought the structure of it was really good… we were taught different techniques and the theory behind it and then we got to test those out… so I thought it was really well-organised and very logical steps going through…'
Rolling the training course out
Improving care for people with dementia is a priority for the NHS, with NICE guidelines on dementia care stating that “Care and support providers should provide all staff with training in person-centred and outcome-focused care for people living with dementia”. NIHR funding has seen the successful implementation of the VOICE study’s new training course in dementia care in support of this.
Additional funding of £28.4k from the NIHR East Midlands Collaborations for Leadership in Applied Health Research and Care has supported some further analysis of the VOICE results and the outcomes of that have already been included in the training programme.
The VOICE training course has been delivered to more than 180 healthcare professionals across the UK. Included in this number are 31 healthcare professionals who “trained as trainers”, and the 54 they went on to train at five English hospital trusts. More training has been planned for the future.
Dr Sarah Goldberg, Associate Professor in older persons care and member of the research team, commented that “Participants found that the training course changed their knowledge, confidence and communication behaviours and they continued to use the skills they had learned on the course in the hospital setting. It is rare to have doctors, nurses and therapists training together and they valued the different skills they learned from each other.”
VOICE has also had international reach with the inclusion of content from the training course in a “Foundations in Dementia” Massive Open Online Course. Run through FutureLearn in 2020, more than 6000 healthcare professionals from 118 countries had enrolled on the course and 97% of respondents reported gaining new knowledge or skills.
A carer’s perspective
Central to the training course and ongoing research is the benefit it has for patients. Kate Sartain, the Patient and Public Involvement representative on the study and former carer for patients with dementia, commented: “It’s common for people living with dementia to always respond "no" if asked to do something. The VOICE study identified phrases and developed a training package that provided healthcare professionals with the conversational skills to overcome the "no" and to say goodbye swiftly and peacefully. The joyous outcome for the people living with dementia is that every day essential tasks, taking medication, eating and drinking became possible to achieve with smiles all round. It benefits the practitioners, the people living with dementia and their family carers who were able to witness their loved ones being cared for without hassle and friction. Having the skills readily available to diffuse anxiety is a win win.”
Rachel Thompson, Consultant Admiral Nurse for Lewy body dementia for Dementia UK/ Lewy Body Society, said of the study: “I applaud the method to providing a detailed and sensitive approach to supporting the development of communication skills for practitioners working with people with dementia. This is an often overlooked and challenging area of practice for which staff often do not receive the support and training they need. An online course would be a welcome addition to the field as the training may be too challenging to deliver face to face sadly, particularly in the current climate."
The VOICE 2 study is currently being planned to extend the finding of the first VOICE study, looking in particular at making more online training available and the costs associated with that approach. It is also working towards increasing the diversity of trainees attending the course and hoping to encourage more members of black and ethnic minority groups to participate in training.
Read about the project on NIHR Funding and Awards.
Read more making a difference stories.