What is Dementia? 

Dementia is not a single disease but a group of symptoms that affect memory, thinking, behaviour and ability to perform everyday activities. Alzheimer’s disease is the most common form of dementia, but there are many types. 

As dementia progresses, the person you love may begin to change. These changes can feel like a series of small losses over time — of memories, personality, or abilities — leading to grief that begins long before death. 

Caring for someone with dementia 

Watching someone you love change and struggle can lead to feelings of sadness, guilt, anger and helplessness. You may feel as though you’re losing the person bit by bit. 

Many carers feel isolated and overwhelmed.  This is often the case when so many are  balancing care with work, family responsibilities, or their own health needs. 

People caring for someone with dementia often experience a wide range of emotions, as our routine changes.  These include: 

• Sadness and sorrow 
• Anger or frustration 
• Guilt or self-blame 
• Resentment 
• Helplessness 
• Anxiety about the future 
• Relief (and guilt for feeling it) 
• Loneliness 
• Grief — before and after death 

All the above can be impacted further if your basic needs like sleeping or eating are disturbed (which is often the case for carers). 

Caring for someone can be physically draining.  Being aware of your own physical health, and seeking support for this via your GP, is so important.  For example, it is best to speak with your GP as soon as you experience anything health related that concerns you, instead of putting it off and hoping it won’t get worse.  Preventing further problems is better for everyone. 

What is Anticipatory Grief? 

Anticipatory grief is the emotional pain we feel before someone has died . When caring for someone with dementia, this grief can start early and last for a long time. 

You might grieve: 

• The person they once were 
• Shared memories they no longer recall 
• The loss of your relationship as it used to be 
• Future moments that will never happen 

This type of grief is valid and very real — even if the person is still physically present. 

Challenging milestones 

There are moments in the journey that can feel especially painful or complicated: 

Making the decision to move them into a care home
This can trigger guilt, grief and a sense of failure — even when it’s the best decision for everyone’s safety and wellbeing. 

If someone else close to them dies
You may wonder whether to take them to the funeral. Consider their emotional and cognitive capacity. It may help to gently explain what has happened, even if they don’t retain the memory.  Due to this, you may need to be prepared to explain several times, which can be hard. 

When they forget someone has died
Conversations around people who have died can be confusing. Repeatedly reminding them can cause distress. It’s okay to avoid painful truths if it’s kinder to do so. 

Other challenges 

Conversations can be painful or confusing — especially when they no longer recognise you or themselves. 

Loss of shared history — when they no longer recall important life events or people. 

Change of role – due to a progressive condition, the person may not be able to fulfil the role they used to in the family, or within their friendship groups and communities.   

Personality changes — can feel like the person you love is disappearing. 

Inability to express their own grief — if someone close to them dies and they can’t fully process or understand it. 

Planning for someone’s death 

Thinking about someone’s death is never easy, but it can be a kindness to both of you.  

Here are some considerations that might be helpful: 

• Having conversations about end-of-life wishes while they are still able to express them. If you need support on this, more information is available through Hospice UK Advance care planning | Hospice UK 

• Preparing legal documents (e.g. power of attorney) 

• Talking to their GP or support team about palliative care 

• Creating memory boxes together, or complete a manageable project that leaves a positive legacy for people to remember 

• Considering spiritual, cultural or personal rituals important to them 

How to support someone with dementia 

Offer reassurance and comfort — even if they don’t remember why they’re upset 

Use clear, simple language 

Maintain routines to reduce confusion 

Validate their feelings even if their understanding of reality has shifted 

Use photos, music and smells to spark memory and joy 

Be patient — with them and with yourself 

How to support yourself as a carer 

You can’t pour from an empty cup. It’s vital to care for yourself, too: 

• Talk to someone you trust and try not to isolate yourself 

• Take breaks where you can, and ask for help 

• Recognise and honour your own grief 

• Be gentle with yourself — you’re doing your best