Anticipatory grief and dementia: Coping with loss before bereavement

One of the hardest things about loving someone with dementia is that you begin to lose them long before you say goodbye. They are still your mum or dad, but the relationship you have always known slowly changes as dementia affects memories, words and familiar routines.

Psychologists call this anticipatory grief, the grief we feel before a loss rather than after it.

Understanding anticipatory grief can help you recognise that what you are feeling is a natural response to real changes. This article explains why dementia and grief are so closely linked, how to make sense of your feelings and where to find support.

At a glance

• Grief can begin early: Anticipatory grief is the sorrow felt while a person with dementia is still alive as their abilities, personality, and relationships gradually change.
• Many emotions are normal: Sadness, guilt, anger, exhaustion, loneliness, relief, and even moments of joy can coexist and do not reflect how much you love or care for your parent.
• Connection can still continue: Familiar music, touch, routines, simple conversations, and planning future care wishes can help families stay close while adapting to dementia.
• Support is available now: You do not need to wait for bereavement to seek help, as GPs, talking therapies, dementia organisations, hospices, and bereavement services may support families before a death.

What is anticipatory grief?

Anticipatory grief is the sorrow you feel about losses happening now or still to come, while the person is alive. With dementia it often begins at diagnosis and continues for years as your parent changes and your relationship shifts to accommodate them.

Grief after a death is recognised by everyone around you. There is an established flow: a funeral, cards, time off work. Grieving before a death has none of that structure because your dad is still in his chair. There is no defined event for anyone to mark, and nobody thinks to ask how you are coping or to make allowances while you adjust.”

You may grieve one change, adjust to it, and then face the next, because dementia can continue for a decade or more after diagnosis. These losses stack up while you are still doing the shopping, sorting the medication, answering the same question four times, and trying to hold your own life together.

Why dementia can lead to anticipatory grief

It could be you notice your calls with them get shorter, and maybe you’re doing more of the talking. You might find sharing a memory becomes one-sided, because now you’re the only one who remembers. Their personality may change too, and a parent who was gentle can turn suspicious or blunt. It’s hard not to take these changes personally, even when you know it’s the illness speaking rather than how she feels about you.

Nobody can tell you how long each stage will last or what next year looks like. You can’t plan for what’s coming and you can’t brace yourself, and living with that many unknowns wears you down. Helping your mum wash or manage her money changes what you are to each other, and that carries its own grief, even when you’re glad to do the work. This is the emotional impact of dementia on the family, and it runs alongside the practical work of caring for someone with dementia at home.

Common signs of anticipatory grief

Exhaustion, rather than tears, is the sign most carers notice first, along with a short temper and a flatness you can’t explain when someone asks how you are.

Family carers describe:

• Sadness that arrives without warning, often after a good visit rather than a bad one.
• Guilt about losing patience, wanting the situation to end, or feeling you should be doing more.
• Anger or frustration, sometimes directed at your parent, sometimes at siblings or services.
• Loneliness, even when the people around you are being kind.
• Broken sleep, appetite changes, headaches, or frequent minor illness.
• Difficulty concentrating at work, or losing track of ordinary tasks.
• Withdrawal from friends, because it’s easier than explaining.

Is anticipatory grief normal?

Grieving before death is a common response to dementia. Research funded by Alzheimer’s Society found that 78% of family carers report feelings of grief. These feelings say nothing about how much you love your parent or how well you are caring for them.

You can feel relief, humour, joy as well as sadness in the same afternoon, without one cancelling out the other. The same study found that around 30% of dementia carers needed professional support, compared with the 10% to 12% the standard bereavement models expect.

How to cope with anticipatory grief

You can’t stop anticipatory grief, but you can make it more bearable. Two things tend to help most: staying connected to your parent in the time you have, and preparing for the decisions that lie ahead. 

Stay close to your parent while you grieve

Keep connecting with familiar songs, holding their hand when you sit together, and taking the same route on your Sunday afternoon walk together because tone, touch, music, and routine outlast words. Keep your sentences short, offer one choice rather than two, and be comfortable sitting in silence.

Don’t correct them: if your dad believes he’s due at work, ask what he did there rather than telling him he retired in 2004. By doing this you avoid arguments that will only upset you and them.

When dementia reaches the later stages

Ask your parent what matters to them while they can still tell you, such as where they’d want to be cared for, and what treatment they’d want or refuse. That conversation gives you something solid to hold on to further down the line. 

If they can no longer decide for themselves, the Mental Capacity Act 2005 in England and Wales requires decisions to be made in their best interests, and you can ask the GP or care team to record the agreed approach in the care plan. Ask about a referral to the local palliative care or hospice team, who support families as well as patients. 

Caroline Scates, Director of Nursing Services at Dementia UK, says:“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. 

“Equally, processing the death of a loved one with dementia can bring with it complex feelings of guilt and loneliness – some people find that they feel a sense of relief, following a period of challenge and knowing that the person is at peace. Whatever emotion, you might be feeling, it is important to take care of your wellbeing during this time.

When to seek professional support

You might feel you should be coping, or that other people have it worse, or that support is for later, but you don’t have to wait until things get worse before asking for help. 

Bereavement specialists have a name for pre-grief. It’s called disenfranchised grief, meaning real sorrow that goes unrecognised by the people around you. It isn’t a lesser form of grief, and it doesn’t need a death to justify support.

Speak to your GP if you’ve felt hopeless for weeks, or if you can’t sleep even when your mum is settled. The same goes if you’re drinking more to get through the evenings, or if work and family life are slipping. In England you can also refer yourself to NHS talking therapies without going through your GP.

Some counsellors and bereavement services will see you while your parent is still living, so say that when you get in touch. If you ever have thoughts of harming yourself, contact your GP the same day or call Samaritans free on 116 123 at any hour.

Helpful organisations and resources

Dementia UK‘s Admiral Nurse Dementia Helpline is on 0800 888 6678, staffed by specialist dementia nurses who talk to families about grief, bereavement, and loss as well as practical care. Caroline Scates, the charity’s Director of Nursing Services, puts it plainly: ‘Grief is different for everyone and feelings can come and go.’ Its podcast series, presented by Kola Bokinni, carries interviews with people who’ve lived through exactly this.

Alzheimer’s Society covers grief, loss, and bereavement when a person has dementia and lists organisations offering bereavement support. Cruse Bereavement Support has a page on anticipatory grief and offers counselling, including before a death. Carers UK advises on benefits, rights, and breaks, and Age UK or your local carers’ centre can point you to dementia support near you.

Next steps

If your parent’s care needs outpace what you can manage alongside grief, consider dementia care at home to help share the load.

Regular visits from a care worker can cover personal care, medication prompts, and meals, which frees you to spend the time you have left as family rather than cargiving.

You can search for home care in your area on homecare.co.uk to find regulated providers and read reviews from other families.

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