All About Alzheimer's Newsletter- Monday 14th July 2024

When we talk about grief, we often think of it as something that happens after a loss. But for many carers looking after someone with dementia, grief can arrive much earlier, while their loved one is still physically present.

This is known as anticipatory grief.

It’s a common but often unspoken experience.

In fact, research suggests that around 71% of people caring for someone with dementia will experience anticipatory grief at some point during the caring journey.

Unlike traditional grief, anticipatory grief doesn’t follow a single moment of loss. Instead, it builds slowly, often triggered by changes in communication, behaviour, memory, and personality. Carers may feel like the person they knew is slipping away—even if they’re still right in front of them.

There’s currently no formal clinical guidance in the UK for supporting carers with anticipatory grief, but that doesn’t mean carers should be left to face it alone. Here are some practical steps professionals can take:

1. Start gentle, honest conversations.
Creating a space where carers can talk openly, without judgement, about how dementia has changed their relationship, and what fears they hold for the future, can be a huge relief. Feeling heard is often the first step to feeling less alone.

2. Ask open-ended questions.
Encourage carers to reflect on how they’ve coped in the past and what strengths they already have. This can help build resilience and self-trust for the road ahead.

3. Offer positive feedback.
Small words of encouragement and recognition can boost a carer’s confidence and help them feel more in control during a time of uncertainty.

4. Signpost to emotional support.
Encourage carers to speak to their GP, who may be able to refer them to talking therapies. Just knowing that support is available can offer a sense of comfort.

Every week, we hear powerful, honest, and deeply moving insights from caregivers like you- and we don’t want them to sit unseen.

Thank you so much for sharing this. What you’re describing is something I hear from many carers, and it’s incredibly hard to live with day in, day out.

Repetitive questions and the arguments that follow can feel relentless. It’s not just the repetition itself, but the emotional toll of not being believed, of being challenged, and of feeling like you’re constantly walking on eggshells.

And when anger is added into the mix (especially when it comes from someone you love) it can feel exhausting and isolating.

Please know that you are not doing anything wrong. This behaviour is a symptom of the illness, not a reflection of your ability as a carer or the love between you.

Dementia affects parts of the brain that control memory, reasoning, and emotional regulation. That means your partner may genuinely not remember what’s just been said, or may be feeling confused and afraid, and expressing that through frustration or anger.

In practical terms, some carers have found it helpful to:

But more than anything, I want you to hear this: your feelings are valid. It’s okay to feel angry, drained, and even resentful at times. That doesn’t make you a bad person. It makes you a human being caring in an incredibly difficult situation.

If you haven’t already, I’d really encourage you to speak to your GP or a local support group. You deserve support just as much as your loved one does.

You’re doing more than most people could ever understand. And you’re not alone.

Warmly,
Harvey

If something’s been on your heart lately, let us know. We read every word. Your voice could offer comfort to someone else navigating the same journey.