What is ‘pre-death grief’ and how can you support people going through it?

In a recent guideline published by the Scottish Intercollegiate Guidelines Network, healthcare workers are being encouraged to be trained in ‘pre-death grief’ while supporting families of dementia patients. This guidance calls for improved support for carers, acknowledging that pre-death grief impacts wider family networks as well as the patient. But what exactly is pre-death grief, what impact can it have, and how can we support those going through it?

Pre-death grief, also known as anticipatory grief, is a common experience for those caring for someone with a terminal diagnosis or who are close to someone who does. It involves grieving for the person before they have died, often triggered by physical decline or changes in personality. This can be particularly challenging for those caring for loved ones with dementia or facing significant loss due to other health conditions.

The impact of pre-death grief can be significant, affecting mood, wellbeing, and even physical health. It differs from grief after a loss in that it often involves a need to mask feelings and look after others at the same time. It can trigger uncomfortable emotions, such as frustration, sadness, and hopelessness, along with physical sensations like changes in appetite or difficulty sleeping.

So, how can you support someone going through pre-death grief? Grief specialists emphasize the importance of being there for someone without judgment and asking them what they need. Some may want to talk about their feelings, while others may prefer distraction or normal conversation. It’s important to remember that there is no one right way to grieve or support someone who is grieving.

In addition to supporting adults, it’s important to remember to help children through pre-death grief as well. Children and young people can also experience pre-grief and may look to adults in their lives for support and answers. Providing them with a support network and including them in what is going on can help them cope with their feelings.

For those experiencing pre-death grief, simply knowing that it is a real and valid experience can be a relief in itself. Self-care is also important, whether it’s seeking professional help, finding support groups, or engaging in activities that bring comfort and peace.

In conclusion, pre-death grief is a complex and individual experience, and supporting those going through it requires empathy, understanding, and a willingness to listen. By acknowledging and addressing pre-death grief, we can better support families and caregivers facing difficult health situations.