1. The Model for Dementia Palliative Care Project- What’s going on?

Why is it important to consider palliative care for people with dementia?

People are living longer, which means that more of us will get age-related illnesses such as dementia. There are an estimated 55,000 people living with dementia in Ireland, the most common form of which is Alzheimer’s disease ^[1]. Many people do not realise that dementia is a life-limiting illness. People die from dementia, not just with dementia. Palliative care can help anyone with a life-limiting illness. It involves actively looking for symptoms of any kind- physical, social, spiritual, or psychological- and providing excellent care to lessen these symptoms. However, in the case of dementia, palliative care needs are often not recognised at all, or else not until the very advanced stages of the disease. This is a problem as it becomes very difficult to involve the individual with dementia in decision making as their capacity is compromised as a result of the disease. Hence, a palliative care approach should be used from disease diagnosis throughout the disease process.

Dementia is associated with complex needs and people with dementia have been shown to have palliative care needs equal to those of people with cancer, but they often don’t get it ^[2]. This is the driving force for carrying out this research. This blog will be the first in a series which will be posted on the Project webpage each month. To get things started, this blog will provide an overview of The Model for Dementia Palliative Care Project, what we have done so far, what we need to do, and what we ultimately hope to achieve.

So what is this project about?

For reasons outlined above, the aim of this Project is to improve the palliative care of people with dementia, and their families, by developing a “model”. Individuals with dementia and their carers need a clearly signposted pathway that directs them to the right care and support, in the right place and at the right time ^[3]. Our model will map out what services, assessments and treatments the person might need and where, so the health system can better organise their care. This model will help to support people with dementia to live well at home in the community for as long as possible. Staying within the family home and in the community is the common preference for people with dementia. However, because of the nature of the disease, many people with dementia will eventually move to residential care as the home setting may no longer be appropriate. There is a need for support for carers and families throughout the dementia journey to help them care for their loved one at home, and also at this crucial and stressful time of transition for the person with dementia and their family. For this reason, the model will also focus on providing support for families and carers of people with dementia to enable them to care for the person with dementia at home for as long as possible.

To develop a useful model for the Irish context, we will explore what is already known about ‘good’ palliative care for people with dementia in the community. This mixed-methods study will be carried out in several phases to cover all relevant aspects and aims of the research.

What has been done in the project so far?                                        

The Model for Dementia Palliative Care Project is an ongoing research project. The Project is broken into a number of stages or steps. Figure 1 depicts the project in a nutshell.

Fig 1: The Model for Dementia Palliative Care Project in a nutshell

We have already completed a number of steps as part of the research;

• A scoping review of the literature has been carried out, to see what evidence there is to support the different potential components of a model.
• A survey of healthcare workers and researchers has been conducted which asked them what they think an ideal model of dementia palliative care would look like, and what existing services providing palliative care for people with dementia in the community exist.

• The results of the survey have been analysed, and part of this analysis helped to form the next step which is examining existing services in: The Republic of Ireland, Northern Ireland, England, Scotland, and Wales.

What are the next steps in the project?

• The next step of the Project is to conduct site visits in 3-6 existing services.
• After the data from the site visits has been analysed, the findings will be brought together with the previous steps of the research (scoping review, survey) and a draft dementia palliative care model will be developed.
• This draft model will be piloted by showing this model to service users, carers and healthcare professionals. Changes will be made to the draft model to improve it in response to the feedback.
• An economic analysis to calculate the ‘cost’ of the model will also be conducted. A budget impact analysis will estimate the financial cost or cost saving to the HSE. A willingness-to-pay analysis will examine the ‘value’ of different parts of the model to users.

Knowledge Exchange and Dissemination Scheme (KEDS)

Knowledge Transfer is a key activity throughout each stage of this Project. We are actively promoting the key messages from the research to the public, healthcare professionals, researchers, and others. This Project has been awarded additional funding from the Health Research Board to promote the findings through further activities, such as these blog posts, an active twitter page, upcoming infographics and videos (stay tuned!) and organising a national conference to launch the Model. The research team have also attended numerous conferences nationally and internationally to speak about the project and to stay informed about other research ongoing in the area. (see Fig 2 and 3 below).

Concluding note from the authors

There is a wonderful, experienced and dedicated team behind this project. We are excited to see what the next few months bring and to learn from existing services who are dedicated to providing the best dementia palliative care to people with dementia and their family/carers.  

We are looking to hear from YOU!

We are interested to find out what healthcare professionals and researchers think about using blogs to communicate our research which is why we would be extremely grateful if you would complete our short survey at the following link:

https://sulis.ucc.ie/limesurvey/index.php/251358?lang=en

If you would like to give your opinion about our blog or if you would like to keep up to date with our research, follow us on twitter @PallC4Dementia where we will also notify you when a new blog article is posted.

As well as keeping you up-to-date with the project via blog articles, we will also be inviting guest bloggers who are interested in the area of dementia and/or palliative care to share their thoughts on this webpage too.

If you would be interested in writing a blog post about a topic in this area please email niamh.oconnor@ucc.ie to discuss further.

Thank you for taking the time to read this blog post, it is the first of many- any feedback to improve is always welcome so keep an eye out for our follow up survey to get YOUR opinion specifically on our blog posts in the coming months.

Fig 2a and 2b– Dr Siobhán Fox presenting findings at the International Conference on Dementia Palliative Care in Belfast, May 2019 (A); and the European Association of Palliative Care Conference in Berlin, May 2019 (B).

Fig 3– Members of the project team with colleagues at the Department of Health’s dementia knowledge exchange event in Dublin,April 2019 (L-R: Ms Emma O Shea, Dr Siobhan Fox, Ms Helen Rochford Brennan, and Ms Niamh O’Connor).