Pioneering study shows how people with dementia can be consulted about their care

People with Alzheimer’s Disease and other forms of dementia can be successfully consulted about care services even when they have significant difficulties expressing themselves. Pioneering research for the Joseph Rowntree Foundation suggests that staff can use a range of verbal and non-verbal approaches to help increase the level of meaningful communication.

The study, based on exploratory work in different care settings, describes the excitement and satisfaction among staff when even a small ‘breakthrough’ was achieved in enabling people in their care to express an idea or preference. But it also concludes that busy care workers need encouragement and practical support from managers to find the time to communicate and to develop their skills.

Kate Allan, a Research Fellow at the University of Stirling’s Dementia Services Development Centre, worked with 40 practitioners (mostly unqualified) in ten settings in Scotland and England, including daycare centres and residential and nursing homes. She found that:

• Communication with people with dementia could take many forms, including staff observing non-verbal reactions that led them to change an activity or routine. It could also occur as a brief verbal exchange during an activity such as washing, walking outdoors or watching television.
• People with dementia responded to different approaches in different ways at different times. Indirect approaches were often effective: for example, showing someone a picture of someone else with whom they might identify, and inviting them to speculate on what they might think or feel about a service.
• Consultation efforts needed to develop on an individual basis. Staff had to take each person’s background and interests into account when finding the right starting point for consultation. Whatever approach was used, it was crucial the emphasis remained on helping individuals to express themselves, rather than sticking to a particular technique.
• It was important for staff to recognise their existing skills and knowledge and increase their confidence. They needed time during the daily routine to talk to other staff members about their experiences and improve their understanding of communication work.

Kate Allan said: “Working closely with people who are experiencing such profound changes as those with dementia is extremely demanding. Yet our study has shown that it is possible for staff in busy service settings to undertake meaningful consultation work that they find particularly rewarding. Consultation has to become an integral part of what happens from day to day and week to week if it is to be effective. To achieve this, staff need support both in generating ideas and having the necessary time to carry out the work and reflect on their efforts.”