Experiences of advanced dementia care in seven European countries: implications for educating the workforce

Background: There is a paucity of robust research concerning care experiences of people with advanced dementia within Europe. It is essential to understand these experiences if we are to address care inequalities and create impactful dementia policies improve services that support individuals and enable family caring.

Objectives: To identify what is working well and not so well for people with dementia and family caring across Europe by exemplifying experiences and typical care settings for advanced dementia care in partner countries.

Methods: Twenty two in-depth qualitative case studies were completed in seven European countries across a range of care settings considered typical within that country. Narrative accounts of care illuminated a unique set of experiences and highlighted what was working well and not so well for people with advanced dementia and family caring. A constant comparative method of analysis was used to identify the common themes.

Results: Eight key themes were identified, what worked well tended to be the opposite of what worked less well. Early diagnosis, good coordination between service providers, future planning, support and education for carers, enabling the person with dementia to live the best life possible and education on advanced dementia for professional and family caregivers were all significant and recurring issues considered important for care experiences to be positive.

Conclusion: People with advanced dementia may have limited opportunities for self realisation and become increasingly reliant on the support of others to maximize their health and well-being. Whilst their healthcare and clinical needs must be addressed, careful attention must be given to psychosocial well-being, living environment and family caring to enable them to live the best life possible. Building on what the case studies tell us about what works well we discuss the potential for integrating the findings into interprofessional learning solutions for the professional workforce across Europe to champion practice based change.