Grief and Dementia

What does it mean if you feel the symptoms of grief—such as denial, depression, anger, panic, and physical ailments—but no one has died? Could you still be grieving? Yes, if you're caring for someone with a life-limiting illness such as dementia. It's called ambiguous or anticipatory grief.


Grief has been identified as the "constant yet hidden companion" of dementia (Dr. Kenneth J. Doka). Caregivers often experience a continuous and profound sense of loss and subsequent grief as they live through the changes associated with the progression of the disease. You may be grieving the losses occurring in your own life and the life of the person with dementia.


Grieving is an up and down process. In the earlier stages of the person's dementia, you may swing between despair and wild optimism that we will soon find a cure. You may even deny anything wrong with the person and suppress your feelings. Later, if you have accepted the situation, you may find that there are periods when you can cope well and make the best of things. At other times, you may feel overwhelmed by sadness or anger or simply feel numb.


Feelings like these are a normal part of grieving, but if you experience them, it is essential to realize that you may be under a great deal of stress and need emotional support yourself.


How can I cope with anticipatory grief?

Long, tiring days define the lives of many dementia caregivers. Here are things you can do to make it easier:

  • Understand that anticipatory grief is normal. You are allowed to mourn before death, so don't feel bad about it.

  • Take care of yourself. Caregiving demands energy that you must replenish. Stopping to rest is a necessity, not a luxury.

  • Seek professional help. Home care and hospice agencies offer various support services for families dealing with dementia. You might qualify for home health aides to assist with your loved one's personal care, such as bathing, dressing, grooming, and light housework.

  • Our Dementia Outreach Specialists can connect you with community resources and counseling services.

  • Take a break. If you qualify for respite care, a trained volunteer can stay with your loved one while you take time to nap, go shopping, attend a caregiver support group, or do another self-care activity.

  • Go to a caregiver support group.

If you are caring for a loved one with a dementia diagnosis, unsure where to turn, or facing a particularly challenging situation, contact ADAW at 608-232-3400 or toll-free at 888-308-6251 to arrange a personal care consultation. To find a support group, visit alzwisc.org/find-support.