September 4, 2023

National Grief Awareness Day is August 30, a good time to discuss the ways dementia caregivers and those living with Alzheimer’s can experience this emotion.

Grief is associated with loss, such as a person passing away, but it’s normal to experience grief and its stages while a person is living with the disease. Feelings of grief prior to loss are called “anticipatory grief,” as we prepare for and think about what’s to come. It can help to acknowledge your feelings and get support to deal with them.

Stages and Experiences of Grief

In the 1960s, Dr. Elisabeth Kübler-Ross identified five stages of grief—denial, anger, bargaining, depression, and acceptance. These can make it easier to recognize your own experience of grief and the different ways it can manifest.

•       – You might deny that you or your loved one has Alzheimer’s or other dementia, refuse to believe a diagnosis, or expect recovery. Another form of denial can be to ignore the onset or worsening of symptoms.
•       – Some people feel frustrated and angry that they got the disease and aren’t able to do everything they did before. And caregivers can experience resentment or feelings of abandonment when thinking about their responsibilities, especially if others aren’t pitching in.
•       –  For caregivers of people in later-stages of dementia, bargaining may involve the hope that your loved ones’ struggle will end. This can lead to feelings of guilt that you didn’t do enough or even that you look forward to the things you enjoyed before becoming a caregiver. It can also involve regret about aspects of your relationship with your loved one.
•       –  Depression and sadness are both common feelings when you’re grieving. You may be mourning someone who has passed away or the relationships and life you had before dementia. Keep in mind that sadness can look different for everyone. Some people may withhold feelings, shut down, or withdraw from activities. Others may become more open with emotions and ask for more time to connect. Both are normal responses.
•       –  Acceptance can take time. It involves understanding your emotions and how grief is affecting you, while learning to live with the good and bad days. Finding humor or moments of joy in difficult situations can also be acceptance.

The stages of grief don’t always happen in order. You might not experience all of them and they may feel different for you.

Moving Through Grief

Being able to live with grief starts with understanding that it is normal and necessary. Let yourself feel whatever emotions and thoughts—positive or negative—come up without judgment. If you are overwhelmed by your feelings, find a healthy outlet for them. This can involve talking to a healthcare professional or trusted friend or counselor, keeping a journal, or even taking a walk.

Accept that your grief is unique to you and your situation. There is no right or wrong way to grieve and no time frame for your feelings. For caregivers, research suggests that becoming educated about dementia, having support, and being organized about care planning can make grief easier to manage, especially anticipatory grief. It’s also important to make time for things you enjoy. You might also seek out people who understand and can empathize, such as a support group.

The Alzheimer’s Association offers a free 24/7 Helpline at 800.272.3900. You don’t need a specific reason to call other than needing to talk. The Association also offers online and in-person support groups and free care consultations, which can include strategies to process grief and take care of yourself. To learn more, visit alz.org.