Helping family carers to make decisions about end of life care

Lead Investigator: Dr Nathan Davies 
Institution: University College London
Grant type: Junior Fellowship
Duration: 36 months
Amount: £224,401

Scientific Title: Supporting family carers of people with dementia at the end of life: Developing a decision aid

Why did we fund this project?

Comments from members of our Research Network:

“This is such an important issue which my personal experience suggests has been largely ignored by practitioners and researchers.”

“This is important research and certainly needed to help carers and family members at a difficult time.”

“Very important as everyone tends to shy away from discussions about end of life, and it is easy to leave it too late. Advice is often lacking.”

What do we already know?

The number of people who are living with dementia is expected to increase over the next few years, mainly due to the ageing population. Providing good care for someone with dementia at the end of their life is an important topic but it is rarely discussed with carers or healthcare professionals.

Identifying when someone with dementia is at the end of their life can be difficult due to the unpredictable nature of the condition. Providing end of life care is also complex as the person with dementia may have several health problems such as difficulties swallowing, agitation and an increased chance of infections. The person could also experience sudden health changes that require immediate hospitalisation or a move into a care home. 

There are about 670,000 family carers of people with dementia in the UK. As the person’s dementia progresses, the carers may find that they have to make difficult decisions about end of life care without knowing exactly what the views of the person with dementia are. Many carers can therefore end up feeling a sense of guilt, unsure whether they have made the ‘right’ decision. 

What does this project involve?

Dr Davies has previously interviewed 46 family carers about the quality of end of life care for people with dementia. From this, he developed a set of ‘rules of thumb’ for healthcare practitioners to use when making decisions about end of life care. This work identified a gap that family carers need support when making decisions. This work will therefore identify which decisions need to be made when it comes to end of life care and develop a ‘decision aid’ for family carers to use. 

This will involve understanding which decision aids already exist for end of life care in dementia and other conditions; interviewing carers to understand which decisions they find difficult to make and how these should be made; and exploring what training and information is needed by the carers. 
Once the decision aid has been made, Dr Davies and his team will test whether this aid is feasible and if carers find it acceptable to use. This will be used to inform a future randomised controlled trial.

How will this benefit people with dementia?

End of life care is incredibly important for people with dementia and their carers but it is rarely discussed and there is little support available. The aid developed in this project will help carers to understand how to make decisions when planning for the future and also in times of crisis. Having the support they need will mean that carers feel less stress and anxiety about the decisions that they are making and will ensure that the person with dementia receives proper and well-informed end of life care.