Identifying the top three symptoms to manage in dementia : a consensus workshop on the Integrated Palliative Care Outcome Scale Dementia (IPOS-Dem)

Background: The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) measures how much the person with dementia is affected by symptoms and concerns. It is a multidimensional, holistic, and person-centred outcome measure. Currently and despite being urgently requested, no symptom management guidelines for the IPOS-Dem are available. To inform guideline development, we engaged our Patient and Public Involvement (PPI) Group to identify the top three critical symptoms to start the process of guideline development. Methods: In a workshop, we consulted with a diverse group of stakeholders, including people with dementia (PWD), family members, nurses, and other experts. Participants received relevant evidence beforehand to support informed discussion. During the workshop, individual symptom preferences were shared in breakout groups and ranked using the nominal group technique. Descriptive statistical analysis was applied to establish consensus, and participants’ comments were analysed thematically. Results: 13 members of our PPI group attended the workshop: one PLWD, five relatives, two nurses, one GP, two charity leads, and one politician. The top three symptoms were I19 Difficulty communicating, I25 Depression, and I26 Lost interest. I19 Difficulty communicating was identified as the most important symptom for guideline development because of its long-term effects of causing misunderstandings, withdrawal, and frustration for both PWD and their caregivers. I26 Lost interest was also identified as relevant from relatives due to past experiences of difficulties managing this symptom at home. Thematic analysis further revealed that these symptoms can overlap and intensify each other. Conclusion: The insights from this consensus-finding workshop directly inform the development and prioritisation of guidelines for management of symptoms as included on the IPOS-Dem. Our project focusing on PWD living at home will further inform the international IPOS-Dem Consortium work.