Navigating grief, bereavement and loss with dementia

The death of someone close is one of the most difficult experiences many of us will face. While everyone grieves differently, the process often involves making sense of what has happened and adjusting to life without the person who has died. Common feelings can include sadness, despair, denial and anger.

Dementia is the leading cause of death in the UK, and one in two people will be affected by dementia in their lifetime. This may be through caring for someone living with dementia, developing the condition themselves, or both.

People supporting someone with dementia may also experience anticipatory grief – a sense of loss that can begin long before the person has died.

Real stories: grief and dementia

The latest series of Dementia UK’s My life with dementia podcast shares real-life experiences of grief, loss and caring.

Sisters Amy and Chloe Lambert speak about their mum Sarah, who was diagnosed with frontotemporal dementia (FTD) at just 47. Amy and Chloe were 12 and 18 at the time. Sarah died in November 2021 following a brain haemorrhage.

Jules Minter also shares her experience of caring for both of her parents with dementia. She describes coping with the loss of her mum in February 2025 while continuing to care for her dad, who died just six months later.

Tips for coping with grief and bereavement in dementia

Dementia UK’s Admiral Nurses recommend the following strategies for managing grief and loss:

• Be patient with yourself and allow time to grieve
• Prioritise sleep, regular exercise and balanced meals
• Avoid making major decisions, such as moving house or clearing possessions, too soon
• Accept support from family and friends
• Reconnect with activities that give you purpose and enjoyment
• Try to avoid social isolation by building new routines
• Consider activities such as writing, art, mindfulness, yoga or meditation
• Connect with others who are also experiencing bereavement

“Grief doesn’t fade – you learn to live with it”

Chloe Lambert said: “The period after Mum died, I felt a mix of shock, grief and adjustment. There isn’t a day that goes by that I don’t think about her. Sometimes I catch myself thinking she will walk through the door again.

“For me, grief is a lingering emotion that doesn’t fade – I just live with it. Mum was, and always will be, my best friend.”

Jules Minter said: “I felt there wasn’t the opportunity to grieve Mum because my attention immediately turned to Dad. He would ask if he could use his bus pass to visit Mum in heaven.

“We kept Mum at home for three days after she died, which meant Dad could sit with her and begin to process what had happened. But at Mum’s funeral, he asked who was in the coffin and whether she would be joining us for dinner.”

Expert advice: understanding grief in dementia

Caroline Scates, Director of Nursing Services at Dementia UK, said:

“Grief is different for everyone, and feelings can come and go. If you love someone living with dementia, it is common to feel a sense of loss even before they have died. You might mourn the relationship you once had or feel that you no longer recognise them.

“Processing the death of a loved one with dementia can also bring complex feelings, including guilt and loneliness. Some people may feel a sense of relief after a long and challenging time, knowing the person is at peace.

“Whatever you are feeling, it is important to take care of your wellbeing.”