Research suggests need for formal bereavement support is largely underestimated

Categories: Care and Research.

The need for grief counselling may be substantially underestimated, according to new research from University College London. A study into levels of pre-death grief for carers of someone with dementia found that the need for formal counselling was around 300% higher than current predictions.

The research Exploring how family carers of a person with dementia manage pre-death grief: A mixed methods study, was funded by Alzheimer’s Society and 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 require professional support.

However, this new study found that 30% of dementia carers needed professional support.

The paper describes pre-grief as the carer’s response to “perceived losses in a valued care recipient.” Adding that, “Family caregivers experience a variety of emotions (e.g. sorrow, anger, yearning and acceptance) that can wax and wane over the course of dementia, from diagnosis to the end of life.”

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 mum, I found there was nothing in terms of support for pre-grief, there was no framework, no structure, nothing. I was in deep mourning for my mum, and I didn’t know how to reach out to anyone for emotional support.

“The grief I experienced before she died, compared to after, was so different and I felt so unprepared. Looking back, I should have tried to reach out but when you are caring for someone, you need to be encouraged to reach out for support.

There needs to be a structure in place that signposts you to the support you need. After my mum died, I was so overwhelmed, and I felt so lost and alone. With a bit more support to manage my grief, whilst she was still here, perhaps I would have been able to cope just a little better.”

Marie Curie says change is needed urgently, not just to meet the current need but to ensure that bereavement services are ready to meet the increased future needs of the UK’s ageing population.

Rachel Warren (lead photo), Senior Policy and Research Manager at Marie Curie, and researcher on the UK Commission on Bereavement, says:

“Caring for a loved one with dementia can be a lonely and distressing experience. When someone mourns a loved one who is changing every day they can experience grief for the person who is still alive.

Without appropriate support some carers are at risk of later experiencing prolonged grief disorder which can have a detrimental impact on their wellbeing. We know from the findings from the UK Commission on Bereavement that being well supported before and during a death is vital to how someone copes when the death occurs.

The number of people living with Alzheimer’s is increasing with the ageing population, so we urgently need to ensure better support is in place for carers.

If the Government invested just the equivalent of a pint of milk for each person in the population, it would help to transform the availability and accessibility of bereavement support to those who need it.”

The UK Commission on Bereavement, an independent commission launched in June 2021, looked at the experiences of people who had been bereaved over the past five years. Based on the findings, it made eight key recommendations for a vision for bereaved people in the future. These included being well supported before and during the death, and to be able to easily find and access the right emotional bereavement support that suits their circumstances.

Dr Richard Oakley, Associate Director of Research at Alzheimer’s Society, said:

“This study shows what we see every day on our Dementia Support Line – we desperately need an improved, better-resourced grief and bereavement support system that not only supports carers at end of life but in the case of dementia, from diagnosis onwards.

“For a carer, strong feelings of grief can arrive well before a person living with dementia reaches the end of their life, as there is a loss of a shared future and intended relationship and lifestyle.

These feelings may develop or change as the person’s dementia progresses and can start when they first notice they are unable to do the same things they used to, when they are diagnosed, or at any other point while they’re living with the condition. While family and social networks play an important role in providing support, this research shows that these networks alone are often not enough.

“With dementia cases set to rise to 1 million by 2025, it’s not acceptable that families continue to face their grief alone. We need to have the right support available for families to support them along the whole dementia journey from diagnosis to end of life.

“Alzheimer’s Society will continue to fund cutting-edge studies, like this one, which shed a light on the gaps that exist, so that together we can improve the lives of people living with dementia and their families.”

Kirsten Moore, the lead researcher on the University College London study, said:

Our research showed that 78% of those caring for someone with dementia reported experiencing pre-death grief. The participants cited that finding the right person to talk to wasn’t always easy and that some feel they can’t access bereavement services as the person is still alive.

We can see that the current bereavement models may underestimate the level of formal counselling and support these carers need and that services are under-resourced to meet the demand, meaning people are going without much-needed support.

These carers provide vital care to people living with dementia, and they have a right to access appropriate support for their own wellbeing.”


The research was co-authored by Kirsten J. Moore | Sophie Crawley | Emily Fisher | Claudia Cooper |Victoria Vickerstaff | Elizabeth L. Sampson

Kirsten J Moore supported by a Fellowship from the Alzheimer’s Society, UK (grant number 325: ASSF- 16-004) and Elizabeth L Sampson supported by Marie Curie core grant (grant number MCCC-FCO-16-U).

About Marie Curie

Marie Curie is the UK’s leading end of life charity. The charity provides essential nursing and hospice care for people with any terminal illness, a free support line and a wealth of information and support on all aspects of dying, death and bereavement. It is the largest charity funder of palliative and end of life care research in the UK. Marie Curie is committed to sharing its expertise to improve quality of care and ensuring that everyone has a good end of life experience. Marie Curie is calling for recognition and sustainable funding of end of life care and bereavement support.

The UK Commission on Bereavement (UKCB)

The UKCB is an independent commission, and is chaired by The Right Reverend and Right Honourable Dame Sarah Mullally DBE, the Bishop of London. She is joined by 15 commissioners reflecting diverse professional and cultural backgrounds from across the four UK nations.

The UKCB asked for evidence of bereavement experiences from the last five years, although it is apparent that the COVID-19 pandemic has exacerbated challenges around bereavement for many people.

The UKCB has been supported by a steering group made up of third sector organisations and charities: Marie Curie, Independent Age, Cruse Bereavement Support, the National Bereavement Alliance, the Childhood Bereavement Network and the Centre for Mental Health, working in partnership with academic researchers: Dr Emily Harrop at Cardiff University and Dr Lucy Selman at the University of Bristol.

Alzheimer’s Society

Alzheimer’s Society is a vital source of support and a powerful force for change for everyone affected by dementia. We provide help and hope. Alzheimer’s Society research shows that 900,000 people in the UK have a form of dementia. By 2025, 1 million people will be living with the condition in the UK, and many millions more carers, partners, families and friends are affected.

Too many face dementia alone. Alzheimer’s Society wants everyone affected by dementia to know that whoever they are, whatever they’re going through, they can turn to us for expert support through practical advice, emotional support, and guidance for the best next step.

Alzheimer’s Society offers friendly support through a range of virtual and in-person services, including our Dementia Connect support line (0333 150 3456), our online forum Talking Point, and Dementia Advisers.

Alzheimer’s Society relies on voluntary donations to continue our vital work. You can donate now by calling 0330 333 0804 or visiting

Download our dementia-friendly guide for tips on best practice to make sure dementia is accurately and fairly reported in the

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