What makes difficult decision-making even more difficult in end of life dementia care?

Talk Code: 
Rammya Mathew
Kethakie Lamahewa, Steve Iliffe, Jane Wilcock, Nathan Davies
Author institutions: 
UCL, Department of Primary Care and Population Health


Dementia is a progressive neurodegenerative condition which is characterised by declining physical and cognitive abilities. End of life care for people with dementia is considered to be variable and often poor quality. A number of complex decisions are made at the end of life surrounding the management and care of a person with dementia. This may involve the management of comorbidity, recurrent infections, and other common end of life symptoms such as poor swallow and declining appetite. This qualitative study aimed to explore factors that increase the complexity which surrounds decision-making at the end of life for people with dementia, based on the views of family carers and health and care professionals.


Four focus groups were conducted with health and care professionals and two with former and current family carers. Additionally, three semi-structured interviews were conducted with carers who preferred not to take part in a focus group. Thematic analysis was used to analyse the data.


Participants highlighted that there is a complex journey of care, which people with dementia travel along. This is often punctuated by a series of sudden moves between care settings, including multiple hospital admissions. This disrupted journey of care prevents relationships from developing between the person with dementia and professionals caring for them. Within this journey of care there is a triad of decision makers, including the person with dementia, their family, and professionals. Decision-making is further complicated within the care journey by conflicts in expectations, values, knowledge, and differing levels of understanding among the triad. A lack of preparedness for end of life care and the uncertainty about the persons care preferences can lead to a cascade of events, which may ultimately result in an unnecessary hospital admission. A cascade of events can also be due to other factors including a lack of skill and expertise, or adherence to standard practice, without consideration for whether this is in line with the best interests of the person with dementia.


In identifying the factors that complicate decision-making, this study takes us one step closer towards addressing these issues. Often there is not the benefit of time to make considered decisions in the context of end of life dementia care. Looking ahead, there needs to be appropriate and timely preparation for the end of life, and where possible, the preferences of the person with dementia should be sought. We also need to promote integrated working between families and healthcare professionals. These measures will minimise the potential for conflict among the triad of decision makers and also reduce the likelihood of a cascade of events. Provision of a stable and familiar care environment towards the end of life will also promote better decision-making.

Submitted by: 
Rammya Mathew
Funding acknowledgement: 
This research was supported by funding from Alzheimer's Society grant number AS-PG-2013-026 and by the Marie Curie Research Programme, grant C52233/A18873.