The need for grief-focused advice and support when caring for a family member with dementia may be significantly underestimated, according to new academic research conducted at UCL.
The study on levels of bereavement among caregivers of a person with dementia found that the need for formal counseling was approximately 300% higher than current predictions.
The new International Journal of Geriatric Psychiatry article was supported by the end-of-life charity Marie Curie.
The current public health framework model for bereavement care states that most people will adapt to loss through support from their social network, but suggests that 10-12% of people will need professional support.
However, this new study found that 30% of caregivers of a person with dementia need professional support.
The article describes pre-grief as the caregiver's response to "perceived losses in the significant care recipient," adding that, "family caregivers experience a range of emotions (such as grief, anger, longing, and acceptance) that can both surface and subside during the course of the illness and care of the person with dementia, from diagnosis to the end of life."
Lead researcher Kirsten Moore, who completed the study while working at the Marie Curie Palliative Care Unit, UCL Psychiatry, said, “Our research showed that 78% of carers of someone with dementia reported experiencing grief before death. Participants noted that finding the right person to talk to was not always easy and that some felt they could not access bereavement-focused counselling and support services because the person was still alive.”
"We can see that current models of bereavement may underestimate the level of formal advice and support that these carers need, and that services are not resourced to meet demand, meaning people are left without the support they need. These carers provide essential care to people living with dementia, and they have a right to have access to appropriate support to improve their wellbeing."
Deborah Paget, 61, is a retired nurse who cared for her mother, Audrey, when she was diagnosed with vascular dementia and Alzheimer's. Deborah says, "When I was caring for my mother, I found that there was nothing in terms of pre-grief support, there was no framework, no institutional support, nothing. I was deeply grieving for my mother, and I didn't know where to turn for emotional support.
"The grief I experienced before she died, compared to after she died, was so different and I felt completely unprepared to deal with it. Looking back, I should have tried to seek help and support, but when you're caring for someone, there needs to be someone to encourage you to seek support and advice. There needs to be a mechanism where you're recognised as needing help and support and referred to the right place. After my mother died, I was so overwhelmed, and I felt so lost and alone. With a little more support to manage my grief, while she was still here, I might have been able to cope a little better."
The Marie Curie Foundation said urgent change was needed, not only to meet current needs but to ensure bereavement services are prepared to meet the increased future needs of the UK's ageing population.
Rachel Warren, Senior Policy and Research Manager at the Marie Curie Foundation, and a researcher at the UK Bereavement Commission, says, “Caring for a loved one with dementia can be a lonely and distressing experience. When someone is grieving a loved one who is changing every day before their eyes, they can experience grief for the person while they are still alive.”
"Without appropriate support some carers are at risk of later experiencing prolonged grief disorder which can negatively impact their wellbeing. We know from the findings of the British Bereavement Commission that good support before and during death is essential to improving the way a person copes when their loved one's death occurs."
"The number of people living with Alzheimer's is increasing as the population ages, so we urgently need to ensure better support for carers. If the government invested just the equivalent of half a litre of milk for every person in the population, it would go a long way in transforming the availability and accessibility of bereavement support for those who need it."
The UK Bereavement Commission, an independent commission launched in June 2021, examined the experiences of people who have experienced bereavement and loss over the past five years. Based on the findings, it made eight key recommendations for future policy to help and support bereaved people. These included good support before and during the death, and being able to easily find the right emotional bereavement support that is appropriate to their circumstances and accessible to them.
Dr Richard Oakley, Associate Director of Research at Alzheimer's Society UK, said: "This research shows what we see every day in our dementia support line – we desperately need an improved, better-resourced bereavement support system that not only supports carers at the end of life but also dementia, from diagnosis onwards."
"For a caregiver, intense feelings of grief can come long before a person living with dementia reaches the end of their life, as there is a loss of a shared future, of the relationship with that person, and of the expectations and hopes for the future and shared life with that person."
"These feelings among family caregivers may develop or change as their loved one's dementia progresses and can begin when they first notice that they are unable to do the same things that their loved one used to do, when they are diagnosed, or at any other point while living with dementia. While family and social networks play an important role in providing support, this study shows that these networks alone are often not enough."
For more information:
Kirsten J. Moore et al, Exploring how family carers of a person with dementia manage pre-death grief: A mixed methods study, International Journal of Geriatric Psychiatry (2023). DOI: 10.1002/gps.5867
