Specialists are not talking about death and dying to people with dementia

Categories: Research.

Significant barriers remain for specialists to talk to people with dementia and their carers about death and dying, a new study has found.

The report, supported by terminal illness charity Marie Curie and Alzheimer’s Society and published in the International Journal of Geriatric Psychiatry,  found that three out of five memory services do not routinely tell family carers that dementia is a terminal condition.

For many people, memory services, who diagnose dementia and offer support, are their first point of contact for accessing information and advice, and are vital in ensuring people get the right care and support early on in the diagnosis when the person with dementia still has capacity.

The study found that while healthcare professionals routinely talk to families about legal arrangements (health and welfare: 72 per cent, finances: 74per cent) and address dementia as progressive (89 per cent), many staff do not discuss the terminal nature of the condition, which leaves some families unaware that their loved one will die from dementia. This is consistent with European research, which shows that only 43 per cent of family carers consider dementia a disease you can die from.

Dementia is the leading cause of death in the UK, but more than a third of people caring for someone with dementia report feeling unprepared for the death. If people are not signposted to the services they need this could result in patients dying with untreated symptoms and pain, and carers struggling with feelings of guilt and complex grief, causing an irreparable ripple effect.

Researchers identified significant variation in follow-up practices between memory services, which meant that some services had fewer opportunities to talk in-depth about advanced care planning and end of life care. Services need to provide additional support to their clients so that conversations can occur after people have had time to adjust to the initial diagnosis of dementia.

The team concluded that establishing relationships and regular follow ups with people may help healthcare professionals feel more comfortable in broaching these difficult conversations with patients and their carers, but access to ongoing support will depend on which memory clinic catchment they live in.

Dr Kirsten Moore, Senior Research Fellow at Marie Curie Palliative Care Research Department (UCL) said:

“It is possible for people to live well with the disease, but if healthcare professionals fail to communicate that people can die from dementia then it becomes difficult to prepare people for end of life and to open up these conversations. While some people may not want to discuss these difficult topics, we need to offer opportunities for having these discussions.

“We know people with dementia lose capacity due to cognitive impairment, so it’s even more important for this vulnerable group to have these discussions early on, so they can make their final wishes known. When these conversations don’t happen, families and carers are unable to plan for their loved one’s death. This is why it’s crucial we get it right from the beginning.

“It’s vital that all healthcare staff receive the appropriate training and clinical support to have the confidence and knowledge to talk to patients and their carers about death and dying. Having a dedicated clinician to address these issues within the memory clinic may be one way of ensuring discussions become a routine part of practice.

“Often it is starting these conversations that is the difficult part. If you can offer an opportunity for a discussion, many family carers will often have concerns or questions they have been unsure about who to ask.”

Marie Cooper, Practice Development Lead at Hospice UK, commented:

“People living with dementia will have over time significant adjustments to make in coming to terms with the condition and all that it entails. In those early days, hearing about it also being a terminal disease can devastating. That is why it is vital that those who come to memory services encounter confident staff who will assess when to raise such matters. Such consideration is the core to responsible care. Simply telling a person they have a terminal condition without such assessment can have an adverse effect.

“Care services reflect wider society and its barriers in talking about end of life care and dying generally. It is really important that both healthcare professionals and the public find ways to talk about death and dying and this is something that Hospice UK is encouraging through its Dying Matters campaign.

“Hospices are supporting an increasing number of people with dementia, including working in partnerships with care homes. Hospice UK is working with Dementia UK to bring together practitioners and clinical leaders from across all care settings to help build their skills and knowledge in providing high quality care for people and their families affected by dementia.”

To read the study, visit The Role of the Memory Service in Helping Carers to Prepare for End of Life: A Mixed Methods Study