SEED (Supporting Excellence in End of Life Care in Dementia) is part of a five-year programme of research supporting professionals to deliver better quality, community-based end of life care for people with dementia and their families.

We caught up with Chief Investigator, Louise Robinson, to find out more.

So why this study?

People Louise Robinson photowith dementia already receive poorer end of life care compared to those with cancer, with more hospital admissions and worse pain control.  The idea for this research began in carer groups from the Alzheimer’s Society and was developed between these groups and the National Institute for Health Research Dementia and Neurodegenerative Diseases Research Network (DeNDRoN).  It aims to support professionals, both commissioners and providers, to deliver good quality, community-based end of life care in dementia. Our key outputs include:

i) Individual care planning documents (ICP) for end of life care in dementia

ii) Educational resources to support the use of the above in NHS practice

iii) Guidance for clinical commissioners of services on providing good quality care.

So what will you be investigating?

To develop the above, we will firstly look at current guidance and existing care pathways for end of life care in dementia to find out which aspects are supported by evidence and which are not.  We are also working with people with dementia, their family carers and professionals to examine how professionals deliver end of life care to people with dementia and their families and especially looking for examples of good practice and solutions to meet dementia-specific problems.  From this data we will develop our care planning guidance and then test it out in the community.

We are also trying to identify meaningful outcomes to measure the quality of end of life care in dementia. We are doing this by looking at existing measures but also by asking people in the early stages of dementia, their family carers and also families who have previously been closely involved in their relatives’ end of life care what measures are important to them during this stage of the illness.


One part of this big study (Workstream 1.3), has just been added to Join Dementia Research. This workstream is looking to understand the needs and preferences of people with dementia and their family members for care towards the end of life. This information will help to develop a care planning approach that will then be tested to see:

• if it is acceptable to older people, their family members and staff and

• whether it improves the wellbeing of older people with dementia.

Marie Poole, SEED Project Researcher, fills us in with more detail.

Marie PooleWhat’s the aim of this workstream?

The aim is to identify and describe the views of people with mild dementia and carers about what elements of care they consider important in end of life care in dementia.

Who can participate?

Participants include people with mild dementia, relatives of people currently caring for people with dementia and bereaved carers.

What does it involve?

We ask them to take part in a card-sorting activity and brief interview. Participants are given 24 statements derived from current literature, which cover a broad range of aspects of end of life care for people with dementia. Using a board, participants are then asked to sort the cards into three piles to indicate whether they think the statements are very important, of some importance, or not so important. If the participant then feels able to do so, they are asked to refine their rank orderings of the statements onto a grid, to illicit their strongest and least important views and opinions. The card-sorting activity is supplemented by a brief interview around choices and any particular topics around end of life care which the participant feels is important.

cardsortingactivityv5

What’s the commitment for a participant?

Overall, explaining the research, gaining participant consent and taking part in the card-sort activity and interview takes around 1 hour for each participant.  Participants are offered the choice of the researchers coming to visit them in their own home or to come into Newcastle University. Where possible, joint visits are arranged for people with dementia and current carers.


two people discussingTo find out if you are eligible please sign up to Join Dementia Research today!

Possible benefits to the participant

While the study focuses on improving services in the future, participants may find it helpful to think about their preferences for care towards the end of life. By drawing on their experiences, the research team will ensure that the care planning approach developed will cover the issues that are most important to patients and carers.

Eligibility for this Workstream

At this time, the team are looking for people with mild dementia of all types.

Unfortunately, they can only include people living close to Tyneside.

The recruitment for this workstream ends on 26 June 2015.

To find out if you are eligible please sign up to Join Dementia Research today!

Hopes from the outcome of the study

If the care planning approach developed is successful, it will be widely disseminated to professionals who provide hands on care, and to those who commission care.

The SEED programme started in October 2013 and will run for 5 years. The project is funded by the National Institute for Health Research (NIHR) and led by Newcastle University.