King's College London

Dementia is now the leading cause of death in the UK. Many people with dementia are older and often live with other long-term conditions, like arthritis. This can lead to a wide range of physical symptoms and emotional challenges, which may cause distress if not properly managed.

This project aims to enable people with dementia and their family carers to access the right care at the right time, to improve comfort and quality of life.

This will be done by adapting a simple assessment tool that is already used in professional care settings to support more person-centred care, guide treatment decisions, and improve communication between those involved in care.

The goal is to help families recognise and respond to symptoms early, so they can access the right care at the right time. A palliative care approach – focused on comfort, dignity and quality of life – can support this by ensuring regular, whole-person assessment to identify and treat symptoms early.

For professional palliative carers, a simple questionnaire called the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) was developed to support regular person-centred assessment. The IPOS-Dem helps identify common symptoms and concerns, so they can be addressed quickly.

Our team will adapt the IPOS-Dem for use at home, by people with dementia and their family carers. We will do this though:

• Cognitive interviews: We will interview people with dementia and their family carers to make the IPOS-Dem easier for them to use. Based on their feedback, we may adjust the layout, wording, and length of the questionnaire to make it clearer and more accessible.
  
  
• Stakeholder workshops: We will hold workshops with approximately 20 people, including people with dementia, family carers, health and social care workers, and commissioners. These workshops will help us understand how people with dementia and family carers can use the IPOS-Dem and work with practitioners, to improve access to timely care and treatment.
  
  
• Feasibility testing: After making changes, we will ask people with dementia and family carers to try using the new version of IPOS-Dem. We will then interview them about their experiences to learn how well it works in practice.

This research will lead to:

• A version of the IPOS-Dem that people with dementia and their family carers can use, along with findings on how it may work in care, and how easy it is to use.

• Publications on IPOS-Dem adaptation, understanding of how it should be used in care, and evaluation of its use in care.

This project is part of the ‘Care Force’, 'Communities' and 'Frugal Innovation' clusters within the King’s Better Health & Care Hub.