Grief, loss and bereavement when a person has dementia

Grief, loss and bereavement are some of the hardest emotions to cope with. When you are close to a person with dementia you are likely to feel these emotions at different times and in different ways. This can be around the time of their diagnosis and as their dementia progresses, not just at the end of their life and after their death.

The person may also have feelings of loss and grief about their condition. This can start when they first notice they are unable to do the same things they used to, when they are diagnosed, or at any other point while they’re living with the condition.

Like anyone, people with dementia will also grieve when someone close to them has died. 

What are grief, loss and bereavement?

Most people who are close to someone with dementia will experience grief, loss or bereavement. This is because dementia is progressive (which means it will get worse over time) and life-shortening. There will be lots of changes to adjust to and this can be extremely difficult.

These feelings can be very strong, and can be even harder to cope with than the practical aspects of caring. Try to remember that you are not alone. It’s very important to ask for help if you need it. Support is available from many services.

Feelings of grief when a person has dementia

Grief is the process of reacting to loss. It often involves strong feelings of sadness or distress, especially when the loss is significant. It is very personal and can affect people in many different ways, including:

• shock
• helplessness or despair
• social withdrawal (avoiding contact with others)
• anger or frustration
• guilt
• denial or not accepting the loss
• longing for what has been lost
• sadness.

Some people even feel positive emotions at the same time, such as relief. How you feel may change, and you might find yourself more able to deal with feelings from one hour, day or week to the next.

For many people grief comes in stages: shock, longing for what has been lost, anger, guilt, and acceptance or finding ways to live with the loss. You might find you go back and forth between some or all of these stages. This is very common and there is no ‘normal’ length of time that grief will last.

Grief is a natural response to loss. However, for some people it can lead to more difficult feelings or unhealthy behaviours that they are unable to move on from. This is known as ‘complicated grief’. People who experience this often need help from a professional such as a GP, bereavement counsellor or psychologist.

Feelings of loss when a person has dementia

When a person close to you develops dementia, you may both have strong feelings of loss. These feelings may develop or change as the person’s dementia progresses. Depending on your relationship with the person and your individual circumstances, you might feel that you are losing or have lost:

• the person
• your relationship with the person
• intimacy with the person
• companionship, support and special understanding
• communication between you
• shared activities and hobbies
• freedom to work or take part in other activities
• a particular lifestyle
• future plans.

When a person dies, this is likely to bring about strong feelings of loss and grief which can vary in intensity and duration. This period of time is called bereavement.

Grief, loss and bereavement during coronavirus

Sadly, many people have lost family or friends during the pandemic, due to coronavirus or other causes. The restrictions on social contact meant that many people weren’t able to have visitors when they were ill or at the end of their life. This includes many people affected by dementia.

Funeral arrangements have also been affected, making it harder for people to say goodbye to loved ones in the way they would have liked.

Restrictions have meant that people were often isolated and coping alone with their feelings and practicalities, such as care and support arrangements. In some cases, these changes were very sudden.

All of this has affected how people have been able to process grief, loss and bereavement. For many it has made the process more difficult, complicated and traumatic.