Background: A growing body of research evidence indicates that improving communication with people living with dementia (PLWD) has a positive effect on their quality of life. Policy initiatives internationally highlight the prevalence of poor communication practices in care environments in general and medical contexts in particular as priority areas for improvement. Currently available communication interventions exhibit shortcomings, and their application remains unusual.
Methods: A spectrum of multidisciplinary professional and lay stakeholders, including PLWD, took part in an iterative consultation process in the UK. This aimed to develop a communications advice package which would meet their needs, and involved observation of practice in a variety of care contexts and semi-structured focus group and individual interviews.
Results: Lay participants reported dissatisfaction with current communicative practices, particularly during contact with medical professionals. Both lay and professional participants reported general dissatisfaction with currently available communication advice. An agreed version of a dementia toolkit for effective communication (DEMTEC) was produced. This consists of three “levels”. The foundation Level 1 details beliefs about the psychosocial effects of dementia on communication, as well as empowering approaches to communication involving PLWD. Level 2 consists of practical considerations and advice in eight key areas. Level 3 uses case studies to show how the principles and advice in preceding levels are applicable to individuals in different care contexts and at different stages of dementia.
Conclusion: The project has produced a free-to-users instrument that is empirically supported and adaptable to individual PLWD and to a range of health, care and sociocultural environments.