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

Manuel Lillo-Crespo, Jorge Riqelme Galindo, Rhoda MacRae, Wilson de Abreu, Elizabeth Hanson, Iva Holmerova, Maria Jose Cabanero, Rosario Ferrer, Debbie Tolson

Research output: Contribution to journalArticlepeer-review

14 Citations (Scopus)


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 settingsfor 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.
Original languageEnglish
Article number1478686
Number of pages12
JournalGlobal Health Action
Publication statusPublished - 13 Aug 2018


  • dementia
  • Alzheimer Disease
  • case study
  • caregivers
  • quality improvement


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