Research Project Title

A Mixed Methods Research Study to Develop an Acceptable, Evidence- and Practice-Based Model for Palliative Care for People with Dementia in the Community.

Keywords

Dementia, Palliative Care, Evidence-based Model, Community Care

Challenge

People are living longer, which means that more of us will get age-related illnesses such as dementia. Dementia is caused by different diseases of the brain. These diseases affect the parts of the brain which are normally used for learning, memory and language. Although Dementia usually affects people as they get older, it’s not a normal part of ageing. Many people don’t realise that Dementia is a terminal illness. People may die from dementia, not just die with dementia. Palliative Care aims to improve the quality of life of people and their families who are facing an incurable, life-limiting illness, such as dementia. Palliative care involves actively looking for symptoms of any kind- physical, social, spiritual, or psychological – and providing excellent care to lessen these symptoms. People with dementia need palliative care just as much as people with cancer, but they often don’t get it.

Read more about our research 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 involves examining existing services that provide palliative care for people with dementia in: The Republic of Ireland, Northern Ireland, England, Scotland, and Wales. We will visit these services and conduct site evaluations. The stages of the project are described in a ‘nutshell’ below in figure 1.
Fig 1: The Model for Dementia Palliative Care Project in a nutshell
  • Phase 3 will involve 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.
  • 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).

Fig 2: Phase 1 survey results displayed as a ‘logic model’

The research team has also developed a protocol for 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 69 papers which will help to inform the development of our model for the Irish healthcare system.

We are currently on Phase 2 of the project and we will begin the site evaluations shortly. We will keep this webpage updated on the projects progress and key findings.

Timeline

October 2017-October 2020

Funding and Support

This research was funded by the Health Research Board (HRB). Knowledge transfer and exchange activities are being supported by the All Ireland Institute of Hospice and Palliative Care (AIIHPC), including the development and running of this website. We will work with the AIIHPC and the National Dementia Office to plan and coordinate a research conference centred around the model in early 2020.

Research Project Outputs

A Palliative Care Researcher’s Experience Using a Knowledge Transfer and Exchange Model – EMTReK [The Model for Dementia Palliative Care Project] by Dr Siobhán Fox.

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@PallC4Dementia | #PallCare4Dementia

For further information contact

Email: s.fox@ucc.ie |Tel: +353 (0)21 4627347

Email: info@aiihpc.org | Tel: +353 (0)1 491 2948