Understanding Anticipatory Grief in Dementia

When we talk about grief, we often think of it as something that comes after a loss. But for many people caring for someone with dementia, grief starts much earlier — while their loved one is still very much alive.

This is known as anticipatory grief.

It’s a common but often unspoken experience. In fact, research suggests that around 71% of dementia carers experience anticipatory grief at some point during their caregiving journey.

What Is Anticipatory Grief?

Unlike traditional grief, which tends to follow a specific event like a death or separation, anticipatory grief builds slowly over time. It’s triggered by the gradual changes that dementia brings — to communication, memory, behaviour, and personality.

Carers often describe feeling like they’re losing the person they knew, even though they’re still physically present. This sense of loss can be heartbreaking, confusing, and isolating.

What Can Healthcare Professionals Do to Help?

Although there is no formal clinical guidance in the UK specifically for supporting carers with anticipatory grief, there are still meaningful and compassionate ways to offer support.

Here are four simple, practical actions professionals can take:

1. Start Gentle, Honest Conversations

Create a safe space for carers to talk about how their relationship with their loved one is changing. Don’t rush to offer solutions — just listen. Being heard and validated can make a world of difference.

2. Ask Open-Ended Questions

Instead of focusing only on what’s difficult, encourage carers to reflect on their existing strengths and what’s helped them cope in the past. This helps build a sense of resilience and trust in their ability to face the road ahead.

3. Offer Positive Feedback

It might seem small, but acknowledging the carer’s effort with a simple “You’re doing an amazing job” can help boost their confidence and reduce feelings of self-doubt. Encouragement matters — especially when someone is emotionally depleted.

4. Signpost to Emotional Support

Encourage carers to speak to their GP, who may be able to refer them to talking therapies or local counselling services. Even just knowing that support exists can be a comfort.

Final Thoughts

Anticipatory grief is real. And carers shouldn’t have to carry it alone.

While there’s still progress to be made in formalising support, the empathy and proactive awareness of healthcare professionals can go a long way in helping carers feel seen, supported, and less alone in their journey.