Caring for carers: Feelings of grief

Dr Kirsten Moore has spent her career researching ways to support carers, including through the use of computers and exercise programmes.

When she asked carers, they told her that while behavioural changes and incontinence are challenging aspects of supporting someone with dementia, feelings of grief are often the most difficult.

Carers described this grief as feeling that they no longer had that person in their life to share their problems and discuss their life with.

In recent years, there’s been greater awareness of what researchers call ‘carer burden’ – the stress and anxiety that carers may face. Yet, very little research has been published about the grief that people can experience while caring for someone with dementia.

Dr Moore says:

‘I felt that, while addressing issues such as depression and burden are important, if we fail to acknowledge grief and loss then carers may continue to struggle.’

Her research has driven Dr Moore to look at how we prepare for end of life in dementia.

Based at the Marie Curie Palliative Care Research department at UCL in London, this Society-funded study will examine the impact of preparing for end of life on carers’ feelings of grief while the person with dementia is alive.

Through a survey of memory services, Dr Moore found that while over two-thirds had a process to identify feelings of depression, burden and anxiety among carers, only 11% had a similar approach to grief. At present, Dr Moore and her team are creating a new resource for carers and seeing how this would best support them. The team will need to decide whether this resource will focus on carer grief or if it should address grief alongside preparing for the future and end of life.

To make the right decision, Dr Moore’s team is interviewing carers and consulting with Experts by Experience – a group of current and former carers. They will also hold a workshop, bringing carers and professionals from all areas of dementia care together to decide what the resource should contain.

Carers will give them their thoughts on whether the resource should be online, written or in audio-visual form. The aim is to develop a resource that carers can use as and when needed, without being constrained by appointments.

Once the resource has been created, the next step will be to test it to make sure it works and is useful in the real world. Dr Moore’s team will start by testing the resource with people who are currently carers. If carers agree that the resource is useful and worthwhile, Dr Moore will take it further, perhaps also making a version to raise awareness and understanding among healthcare professionals.

November 2018: Please note this study is currently full and not seeking new participants at this time. Thank you.