The Model for Dementia Palliative Care Project

Research Project (currently ongoing)

This project aims to improve the palliative care of people with dementia, and their families, by developing a “model”. This model aims to support people with dementia to live well at home in the community for as long as possible. The model will map out what services, assessments and treatments the person might need and where, so the health system can better organise their care. To develop a model that will work in Ireland, we must first learn what is already known about “good” palliative care for people with dementia. This mixed methods study will be carried out in several phases: 

This project aims to improve the palliative care of people with dementia, and their families, by developing a “model”. This model aims to support people with dementia to live well at home in the community for as long as possible. The model will map out what services, assessments and treatments the person might need and where, so the health system can better organise their care. To develop a model that will work in Ireland, we must first learn what is already known about “good” palliative care for people with dementia. This mixed methods study will be carried out in several phases: 

• Phase 1 of the research study involved conducting a scoping review of the available literature to allow us to see what existing services and models are supported by research evidence. This phase also involved conducting a survey to identify what key stakeholders consider to be important for a model of palliative care.

• Phase 2 of this study involved examining existing services that provide palliative care for people with dementia in: The Republic of Ireland, Northern Ireland, England, Scotland, and Wales. We conducted site visits to 4 exemplar services. The stages of the project are described in a ‘nutshell’ below in figure 1.

• Phase 3 involves developing a draft palliative care model which we will show to people with dementia, their families and healthcare professionals for their feedback which will influence the final model. Knowledge Transfer is a key activity throughout this project. We are engaging with HSE so that they are invested in using the final model. We are engaging with the general public to promote palliative care for everyone, including people with dementia.

• Phase 4 will involve conducting an economic analysis to calculate the cost of the model. A budget impact analysis and a willingness to pay analysis will be conducted.

• Knowledge Transfer will be a key activity throughout this project. We will engage with the HSE so that they are invested in using the final model. We will engage with the general public to promote palliative care for everyone, including people with dementia.

Key Findings and Recommendations (on-going)

This three-year research project commenced in October 2017. As this project progresses this research webpage will be updated:

Phase 1: The research team designed a survey to: i) identify existing models for dementia palliative care in Ireland and the UK, and ii) to identify key components of effective models. The results of this survey (n=112) are mapped out in a logic model below (see Fig 2). A research paper based on the results of the survey study has been published (Link to paper).

The research team have also completed a scoping review to guide their search of the literature for relevant research. The protocol is registered with PROSPERO ID: CRD42018091158. The search resulted in 19 papers which have helped to inform the development of our model for the Irish healthcare system. A paper detailing the results of the scoping review is currently under review.

We are currently on Phase 3 of the project, having completed the survey, scoping review and site visits. We have developed a draft model and have begun consultation with key stakeholders.