Supporting someone experiencing grief for a person with dementia who is still alive

We initially came together with bereavement charity Cruse Bereavement Support Cymru to support people in Wales following the death of a person with dementia. 

After that project ended, we launched a new one with them called Supporting loss along the journey with dementia. This focused on feelings of grief and loss that people can experience while a person with dementia is still alive. 

‘During the first project, people affected by dementia requested pre-bereavement support on many occasions, so there was an obvious gap which we wanted to address,’ says Maxine Norrish, Project Manager at Cruse. 

Working closely with Maxine on the pre-bereavement project was Siân Biddyr, Dementia Connect Local Services Manager at Alzheimer’s Society Cymru. 

‘Together, our organisations were able to provide specialist support to people with dementia and their carers and families, from diagnosis onwards, to better cope with the individual pre-bereavement journey that each person will make,’ she says. 

Greater understanding 

Following an initial assessment, people were offered up to six support sessions with a specially trained Cruse volunteer. Group support sessions were also available, co-facilitated by the Society and Cardiff and Vale University Health Board.

‘There is such a shortage of care services now, so having support like this can prevent situations escalating and people going into crisis,’ says Siân. 

We also supported four groups of people affected by dementia to help shape the training that’s given to Cruse volunteers. This included making sure that support materials were suitable for them. 

‘As a direct result of close continuous contact between us, recommendations and improvements to the pre-bereavement service have been easily implemented,’ says Maxine. 

‘There is now a greater understanding of dementia and loss between the two organisations.’

Better equipped 

Society staff in Wales were able to experience the pre-bereavement training given to Cruse volunteers. This puts them in a better position to understand people’s feelings of grief and loss. 

Although the project ended in early 2022, our frontline staff – such as Helen Payton, a Dementia Support Worker – have been able to continue referring people to Cruse wherever this could help. 

‘We see a range of emotions in people, like anger or frustration. Their loved one is still there, but also not, so they need support to talk about loss along the journey,’ she says. 

Helen notes that it can take a couple of conversations for someone to reveal how they’re really feeling. 

‘You never know what’s going on behind somebody’s social facade – people can be stoic,’ she says. ‘I’ll always mention the Cruse support when I visit, as I don’t want to be anybody’s “no”’. 

Helen feels that this sort of support should be available across the UK. 

‘It gives people space to unpack how they are feeling and know that it’s OK to feel sad or frustrated,’ she says. 

‘They’ve said that it makes them feel better equipped with the tools and resources.’

Still needed 

Lesley Pitchford’s husband, David, lived with Lewy body dementia for over 10 years. She was in a ‘very broken place’ when she first had support sessions with Cruse volunteer Jez. 

‘I thought, I haven’t “got” David anymore. I felt like we were clinging to the wreckage of our lives. I just didn’t know what to do,’ she says. 

‘I come from a generation of people that were told, “You can stop that crying or else I’ll give you something to cry about.” But Jez was a safe place, a refuge. He just sat, he listened, and gradually I let down my guard. 

‘After quite a few weeks of talking, Jez asked me a very big question, which I’m very thankful about. He said to me, “What are you going to do after David?” 

‘It was a question that was big in my head, but I had no idea.’ 

Knowing that Lesley was a Christian, Jez suggested that she could pursue something related to her faith. As a result, Lesley completed training and was recently ordained as a self-supporting minister in the Anglican church. 

‘How good is that?!’ she says. 

‘Jez lifted me, by accepting and acknowledging me. And by asking me what I was going to do next, it was like saying, “You still exist – the world still needs you.” 

‘In my darkest and most difficult place, Cruse picked me up, helped me get to my feet and gently shepherded me.’ 

David died earlier this year, and Lesley feels that the pre-bereavement support has helped her in the months since. 

‘It has been immeasurably beneficial in accepting and coming to terms with the loss,’ she says. ‘It’s an inspiring intervention.’