The issue of loss and grief is one of the most significant issues when supporting people with dementia and their caregivers. Losses and grieving occur in different ways at all stages in the dementia caregiving journey.

People with dementia are likely to experience feelings of loss and grief over their diagnosis and throughout the progression of disease, as their own abilities gradually change.

Family caregivers also experience and grieve the loss of their dreams and expected plans for the future, the loss of a confidant and a partner, the loss of shared roles and responsibilities, and the progressive losses in the life of the person with dementia. The ambiguous loss and grief that a caregiver may experience can make the caregiving experience even harder. Fortunately, understanding loss and grief can help.

Grieving is an up and down process. You may swing between optimism and despair. You may deny that anything is wrong with the person and try to suppress your feelings. There may be periods when you can cope well and make the best of things. At other times, you may feel overwhelmed by sadness, anger or fear. Feelings like these are a normal part of grieving.

Tips for coping with grief:

  • Feel the pain. Denying your feelings only intensifies and prolongs the pain.
  • Cry. Tears can be therapeutic. Relieve tension through shouting or punching a cushion. Make sure that the person with dementia is out of earshot or you may distress them.
  • Talk. Sharing grief can help diminish it. It can be helpful to talk to a person outside the family, such as a counsellor, friend or support group.
  • Keep a journal. A journal is a place where you can privately explore your frustrations and express your thoughts and ideas without interruption.
  • Consider your own needs. If you spend a lot of time with the person with dementia, taking regular breaks can keep you in touch with the outside world and raise your morale.
  • Find comfort. Different people have different ways of finding comfort. For many there is comfort in rituals, such as prayer, meditation or other activities.
  • Hold off. Thoroughly explore all options before making decisions.
  • Be kind to yourself. Be patient with your feelings. Find a balance between the happy and sad person, the angry and peaceful, and the guilty and glad self.
  • Learn to laugh again. Rediscover your sense of humour. Watch a funny movie, read the comics, or spend time with a friend who makes you laugh. Finding joy in life can be one way of honouring the happy times you used to share with the person with dementia.

It is fairly common for people facing dementia to experience depression, but this should not be regarded as inevitable. Depression is treatable. Speak to your doctor if you are concerned about depression.

Grieving in the final stages of dementia
When the person with dementia reaches the final stages, he may no longer be able to recognize you or communicate with you, which can be very painful. Although the person is still alive, you may still feel a sense of bereavement because you have lost the person he once was. You are aware that the relationship between you is almost over, yet you can’t mourn the person fully because he is still alive. At this time, you may find that just sitting together holding hands or placing an arm around the person may give you both comfort. It may also help to comfort you to remember that you did all you could.

Some caregivers of a person with dementia find that they have grieved the loss of the person for so long that they don’t have strong feelings of grief when the person dies. Others do experience a range of emotional reactions. These may include:

  • Feeling numb
  • Denial of the situation
  • Shock and pain, even when death was expected
  • Relief both for the person with dementia and for the caregiver
  • Guilt
  • Sadness
  • Feelings of isolation
  • A sense of lack of purpose

For some people, it is normal to go through these feelings for a long time. If you have been looking after someone with dementia, you may feel a huge void in your life when the person has gone. Even if you are coping well generally, you may still find there are times when you feel especially sad or upset. Celebrations and family events such as birthdays may be particularly hard, and you may need to lean on family and friends for support during these times. During the months following the person’s death, try to avoid making any major decisions, when you are still feeling shocked or vulnerable. Seek out your family physician if you need help with anxiety or depression.

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Last Updated: 03/01/2018