Why is this study important?

People with dementia who live at home are more likely to experience poorer quality of care towards the end of life than those who reside in care homes. Many people living at home are likely to have help from formal carers, or ‘homecare workers’ who play a key role in providing end of life care for people with dementia. However, homecare workers have limited support or training to do this. There is a tool called ‘IPOS-Dem’ that could help. IPOS-Dem (Integrated Palliative care Outcome scale for Dementia) is a ‘person-centred outcome measure’ that assesses the palliative care needs of people with dementia. Using the IPOS-Dem means that homecare workers could monitor if clients’ needs are being met and if changes to their care plans are needed. However, while the IPOS-Dem has been tested with other teams, it has not yet been tested with homecare workers.

What is the aim of the study?

We aim to explore, as a proof of concept, the implementation of the IPOS-Dem in homecare settings.

 What methods will we use?

Underpinned by principles of co-production and implementation science, our project comprises three phases:

1. Implementation planning: We will hold workshops with homecare workers, managers, and lived experts to co-design a plan and resources to help homecare workers use the IPOS-Dem in their routine practice.

2. Implementation testing: We will put the plan and resources into action by testing the IPOS-Dem with homecare workers. During a 12-week implementation trial, we will seek feedback from homecare workers with reflective diaries and an interview to understand how they found using the IPOS-Dem in practice.

3. Community engagement: Across the project, we will use different ways to engage with different people – including people affected by dementia and other public members, health and care professionals, researchers, and policymakers – to raise awareness of the need for more support for homecare workers providing end-of-life care for people with dementia.

What are the outcomes and impact of the study?

Our project has potential to add value to homecare workers who are often unsupported, and for people living and dying with dementia in their own homes, who are often under-served. To do this, we hope to develop and share resources to help homecare workers use the IPOS-Dem in practice, improve their knowledge, skills and confidence in providing end-of-life care for people with dementia, and raise awareness of the need to better support homecare workers in their provision of end-of-life care to people with dementia. We hope that through these outcomes, we will contribute to the longer-term goal of improved identification and management of unmet needs in people living and dying with dementia.

You can find out more about the PALLDEM-Homecare project by clicking on this link: https://www.kcl.ac.uk/research/palldem-homecare-homecare-practitioners-providing-end-of-life-care-for-people-with-dementia

The PALLDEM-Homecare project is a collaboration between the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, NIHR Health and Social Care Workforce Research Unit at The Policy Institute, Home Instead Wandsworth, Lambeth & Dulwich, and people with lived experience. The project is receiving input from a Homecare Expert Advisory Board of homecare managers and workers from across the country, and a Lived Expert Advisory Board of people living with dementia and people with experience of caring for a relative with dementia. Their input will ensure the project, and its findings, remain relevant and meaningful to those affected.