How to cope with grief and loss when a loved one has dementia

Grief and loss are both very complicated and difficult emotions. When you are close to a person with dementia you may feel these emotions at different times and in different ways. For example, you may feel a sense of grief at the time of their diagnosis, or a series of losses as their dementia progresses, explains Angelo Makri, Senior Knowledge Officer for Wellbeing at Alzheimer's Society.

When someone feels a sense of loss even though the person with dementia is still alive, this is known as "ambiguous loss" or "living grief". You may feel that the person’s personality has changed so much that they do not seem to be the same person, leading to a sense of grief that can be difficult to process.

These can come in the small moments as well as the larger ones, for example if a mum who was known for her epic Sunday roasts no longer knows how to use an oven.  A dad who was a die-hard Liverpool FC fan—who knew every fact, figure, player, goal and score—now showing no care for who or when Liverpool are playing next. 

With almost a million people living with dementia in the UK—there are at least a million versions of this sad story, with countless loved ones experiencing complicated, and sometimes confusing, emotions—helplessness, guilt, anger, sadness, denial, frustration, even relief to name a few.

You and the person with dementia may both feel a sense of loss as their condition progresses and your relationship changes. You may grieve for a short time as you experience these changes, or the grief may be ongoing. Your feelings of grief may also change and go back and forth over time.

As dementia progresses, your relationship might shift from both of you supporting each other, to one where you take on much more caring responsibility. The person may become more dependent on support from you and others, which might be very difficult for you both to adjust to.

Feelings of loss and grief might make it harder for you to cope with caring. It’s important to acknowledge any feelings you have and try not to feel guilty about them. There is no right or wrong way to grieve or cope with loss.

When you’re supporting a person with dementia, you may sometimes feel you’re coping well, but then at other times feel overwhelmed by grief, or as though you have no feelings left. Some people find they feel angry or resentful at how things have turned out, things they have lost, and the difficulties they must face. Some feel a sense of loss about their own life. You may feel guilty or shocked if you are experiencing these emotions yourself. Try to remember that these feelings are a natural and valid response to a difficult situation.

Caring for a person with dementia can have a huge emotional impact, and feelings like these can be very difficult to cope with. It can be even harder if there are people around you who don’t fully understand or accept the impact the person’s dementia is having on you.

There is no right or wrong way to manage your feelings, but we have included some tips that may help you to manage your sense of grief and loss:

Some people find it helpful to write a journal or to do creative activities such as art, music, or drama. Others may find that allowing themselves to cry helps them to express their grief.

Try to make time to do something for yourself each day, such as meeting or calling friends, watching a favourite television show, or taking time to listen to music. Taking some time to relax even for a short time is very important.

Try to eat well, get as much rest as you can and do some exercise. If you’re feeling low or anxious, or are very tired or not sleeping, speak to your GP.

For example, if you regularly go to religious services, try to continue doing so. If you’re not able to go to a place of worship, watching online services, praying or singing at home can be helpful.

If you feel that you need a break to help you cope, you can speak to a social worker or dementia support worker about arranging this. Friends or family may also be able to step in to help.

There will be lots of changes to adjust to as the person’s dementia progresses. But try to also look for new opportunities to spend time with the person, as well as other interests you have that you enjoy.

Emotions experienced are likely to be different for everyone, but while almost always difficult and challenging, it’s important to remember that you are not alone.

Alzheimer’s Society through its support services is there for people again and again, offering help through some of the hardest and most frightening times.

Alzheimer's Society also provides hope for the future by campaigning to make dementia a priority and funding groundbreaking research to one day end the devastation caused by dementia.