Dementia and Bereavement: Busting the Myths

Cruse Bereavement Care and ExtraCare have been working together in partnership since 2017, to improve bereavement support for residents.

As part of the partnership, funded by the National Lottery Community Fund, it’s been really important to consider how residents living with dementia, and their families and carers, experience bereavement and loss.

We know that the death of someone close can be shattering, so I wanted to consider some of the myths we hear about dementia and bereavement.

Myth – A person living with dementia doesn’t experience grief

Reality – A person with dementia may experience bereavement in a range of ways.

A person living with dementia can grieve, although how someone understands the bereavement can be complicated by their thinking. Even if the person living with dementia doesn’t remember the details of the death, the person may remember the feelings associated with the person who has died, and feel a strong emotion or sense something is wrong. Cognitive difficulties can create unique challenges for the person with dementia, such as forgetting the person has died or being confused about who has died.

To assist our ExtraCare teams to respond in the best way we have incorporated a grief related scenario into our new Responding to distress and behaviours that challenge guidance.

Myth – Grieving only starts when someone has died

Reality – Carers and families tell us they can experience grief from diagnosis, or even as symptoms start to appear. This can include feelings of loss of: the relationship, lifestyle, shared hobbies, intimacy, planned future, communication and companionship and support from the person.

Carers and families can grieve at different stages from diagnosis through to death and beyond. Everyone experiences grief differently and there is no ‘normal’ or ‘right’ way to grieve. It is a very individual experience.

Cruse and ExtraCare are currently developing a resource which captures the carers’ experience of ‘loss along the dementia journey’, including advice from carers themselves. This will be available summer 2019.

Myth – A person living with dementia has no awareness of their losses

Reality – A person living with dementia may grieve for their loss of abilities, independence and skills as their condition progresses. They may also grieve for future plans and dreams.