Supporting Someone Living With Dementia - and Grieving Along the Way
Author: Yvonne Tulloch
Date: 21st May, 2026
Overview: In this guide, explore the impact of dementia on anticipatory grief, learn how to care for yourself while supporting others and how to find compassion, connection and support through the changes dementia brings.
Dementia brings many different losses, often long before a death occurs. Families, friends and carers can find themselves grieving gradually as memory, confidence, independence, communication or personality change over time. This is sometimes called “living grief” or “anticipatory grief”.
If someone you love is living with dementia, you may experience a confusing mixture of emotions: sadness, frustration, guilt, helplessness, exhaustion, relief, love and even moments of joy and connection. All of these feelings can exist together.
There is no right way to feel.
Understanding dementia grief
Grief linked to dementia can feel different from bereavement after a death because the person is still physically present, even while aspects of your relationship are changing.
You may grieve:
conversations you used to have
shared memories or routines
changes in personality or behaviour
loss of recognition
future hopes and plans
the growing impact on family life
the strain on your own wellbeing
For the person living with dementia, there may also be grief linked to loss of independence, confusion, fear or awareness of change.
Grief in dementia is often ongoing and repeated. Each new change or decline can bring fresh sadness.
Supporting someone living with dementia
You do not need to have all the answers to make a difference. Often, calm presence, patience and reassurance matter most.
Try to enter their world rather than pull them into yours
Correcting facts or challenging confused memories may increase distress. Instead, focus on the emotion behind what is being said.
For example:
“You seem worried.”
“That sounds upsetting.”
“I’m here with you.”
Connection is often more important than accuracy.
Keep communication simple
Speak slowly and clearly.
Use short sentences.
Give one piece of information at a time.
Allow time for responses.
Reduce background noise where possible.
Facial expression, touch and tone of voice can communicate reassurance even when words become difficult.
Hold onto familiar routines and comforts
Music, photographs, favourite foods, faith practices, nature, pets or familiar smells can help create moments of comfort and connection.
Even when memories fade, emotional responses often remain.
Remember the person beyond the diagnosis
Dementia affects abilities, but it does not remove someone’s humanity, value or need for dignity and love.
Small acts of inclusion matter:
involving them in conversations
offering choices where possible
speaking directly to them, rather than about them
recognising their history, identity and preferences
Caring for yourself as a supporter or carer
Many people supporting someone with dementia carry enormous responsibility over long periods of time. It can affect sleep, finances, relationships, work, health and emotional wellbeing.
You may feel pressure to cope constantly.
But support carers need support too.
Common feelings carers experience
guilt for feeling tired or overwhelmed
anger or frustration at the situation
sadness about gradual changes
loneliness and isolation
anxiety about the future
relief after periods of respite
guilt connected to care home decisions
These reactions are common and understandable.
Give yourself permission to rest
Rest is not selfish.
No one can provide endless care without support. Taking breaks, accepting help and maintaining your own health are important parts of caring.
Where possible:
share responsibilities with others
stay connected to supportive people
seek respite care when needed
speak honestly about how you are coping
continue activities that help you feel grounded
When dementia progresses
As dementia advances, communication and physical health may become more affected. Families can face difficult decisions about care, safety and medical treatment.
This stage can bring deeper grief as well as practical and emotional exhaustion.
It may help to:
ask healthcare professionals questions
seek support from dementia organisations or support groups
discuss wishes and plans early where possible
involve trusted family or friends in decision making
remember that perfection is impossible
Many people carry guilt about whether they are “doing enough”. In reality, most are doing the best they can in painful and uncertain circumstances.
Grieving after a death from dementia
When someone dies after living with dementia, grief can feel complicated.
Some people experience intense sadness. Others may also feel relief that suffering, confusion or strain has ended. Some feel numb after years of caregiving.
There may also be grief for the years dementia already took away.
Again, there is no right response.
Bereavement after dementia can sometimes feel isolating because others may not understand how long the grieving process has already been.
Be gentle with yourself.
Children and young people affected by dementia
Children may notice changes in behaviour, memory or communication without fully understanding what is happening.
Helpful approaches include:
using simple, honest explanations
reassuring them they are not to blame
encouraging questions
helping them stay connected in manageable ways
acknowledging sadness and confusion openly
Creative activities, memory sharing and routines can help children process difficult feelings.
Faith, meaning and hope
For some people, dementia raises difficult spiritual questions around identity, suffering and loss.
Others find comfort through prayer, faith communities, rituals, music or simply being present with the person they love.
Hope may look different than before.
It may no longer be hope for recovery, but hope for comfort, dignity, moments of peace, meaningful connection and not facing things alone.
You do not have to carry this alone
Dementia affects whole families and communities. Seeking support is not a sign of failure.
Talking with others who understand, accessing bereavement support or joining dementia support groups can help reduce isolation.
Support may be helpful before and after a bereavement.
Finding support
Useful sources of support may include:
Local dementia support groups, Dementia UK
Carers’ organisations and support Carers UK
Attending The Bereavement Journey® support programme online which can sometimes feel easier than attending an in-person group
Faith communities
Counselling or listening services
If you are struggling emotionally, feeling overwhelmed or unable to cope, reaching out for help is important. You deserve support too.
If you or someone you know is grieving and looking for support, Ataloss.org directs to bereavement support services across the UK, as well as a growing library of helpful resources for people who are grieving, whoever is bereaved and whoever has died.
You can also hear more about Celebrity Ambassador Lisa Coupland’s story as she shares the personal losses that shaped her understanding of grief - from the death of the grandparents who raised her, to walking alongside loved ones through dementia and long goodbyes.
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