When you’re caring for somebody with dementia, you’re likely to experience many different emotions, including grief. For example, you may experience anticipatory grief at the time of diagnosis, or a series of small losses as the dementia progresses.
While this can be disorientating, it’s completely normal. According to 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.”
We spoke with Alzheimer’s Society about the grief that often comes hand-in-hand with caring for somebody with dementia.
The grief you may experience when caring for somebody with dementia
These losses can appear in many ways and aren’t always big or dramatic. For example, it could be a mum who was known for her legendary roast dinners not being able to use an oven anymore. Or a dad who was a die-hard football fan – who knew every fact, figure, player, goal and score – no longer caring about the sport at all.
According to Alzheimer’s Society, almost a million people in the UK are living with dementia. This means that there are at least a million versions of this story, leading to ripples of complex emotions running through families. These can include helplessness, guilt, anger, sadness, denial, frustration and even relief.
Feelings of loss when a person has dementia
Both you and the person with dementia may feel a sense of loss as their condition progresses and your relationship changes. This grief may just be for a short time as you experience these changes, or it may be ongoing. They also may go back and forth over time,
You may also find that your relationship dynamic may shift, from both of you supporting one another to one where you take on a much more caring responsibility. Your loved one will likely become more dependent on your support, which could be very difficult for both of you to get used to.
How to process these feelings
These feelings of loss and grief may make your caring responsibilities feel more difficult. Alzheimer’s Society said: “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 somebody with dementia, you may find that your emotions are often interchangeable. You may feel that you’re coping well, but then at other times feel that you’re overwhelmed by grief, or even completely numb. Anger and resentment are also common emotions as people process their frustrations with the difficulties ahead of both themselves and the person with dementia.
While you may feel guilty or shocked for having these feelings, they are a natural and valid response to a very difficult situation.
Caring for a person with dementia can take a huge emotional toll and these feelings can be difficult to cope with, especially if the people around you don’t understand or accept the impact the person’s dementia is having on you.
How to manage your feelings when caring for somebody with dementia
While there is no right or wrong way to feel when dealing with something so difficult, Alzheimer’s Society has offered the following tips for coping:
Find ways to express your feelings and how the situation is affecting you
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.
Consider your own needs, too
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.
Look after your physical and mental health
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.
Look after any spiritual needs you have
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.
Take a break, if you think it will help
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.
Focus on the things that you and the person can still do together
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.
Alzheimer’s Society added: “There is no one right way to experience or cope with a loved one’s dementia - emotions experienced are likely to be different for everyone, but whilst almost always difficult and challenging, it’s important to remember that you are not alone.”
Alzheimer’s Society is there for people again and again, through the hardest, most frightening times. If you need support or information, visit alzheimers.org.uk or phone the Dementia Support Line on 0333 150 3456