Seeing a loved one with a dementia slip gradually away from us is painful. Seniors Guide writer Lisa Oliver Monroe looks at understanding and managing dementia grief.
When a loved one passes away, we expect to experience grief. But what about when a loved one receives a dementia diagnosis and slips away slowly?
According to experts, it’s normal for those close to a person with dementia to grieve. Anyone among family and friends may experience these feelings, whether or not they actively care for the person, although it can be more intense for partners.
The unique sense of loss experienced by those close to a person with dementia is called dementia grief.
Different people experience, express, and cope with these feelings in their own way. However, there are some common feelings they may encounter.
Handling the diagnosis
Even the initial diagnosis stirs predictable and difficult feelings. In a study published in 2018 in Dementia, an international peer-reviewed journal, caregivers experienced these common feelings upon diagnosis:
- Anticipating the diagnosis
- Feeling relief when the diagnosis is made
- Understanding the weight of the words
- Grieving the loss that’s to come
- Watching for the patient’s reaction
- Accepting the diagnosis and moving forward
- Committing to caring for the patient as the disease progresses
Strong feelings of loss are perfectly normal, along with sadness, distress, shock, helplessness or despair, anger or frustration, guilt, denial, and longing for what has been lost.
The Alzheimer’s Association says, “You are entitled to these emotions and may start to experience them as soon as you learn of the diagnosis.”
Managing dementia grief
As the disease progresses, it’s normal to continue experiencing strong emotions and a sense of loss, to feel sad, angry, or frustrated, but the experience is different for everyone. “The stages of grief don’t happen neatly in order,” according to the Alzheimer’s Association. “You may move in and out of different stages as time goes on.”
Life expectancy after a dementia diagnosis varies, and Alzheimer’s disease, the most common cause of dementia, can last more than 10 years. This means the road ahead can be long. Research on dementia grief has shown that a caregiver’s pre-death grief increases as the dementia worsens, as their own health deteriorates from the challenge of their responsibilities, and as their sense of burden grows.
Caregivers can expect feelings to fluctuate and become stronger as the loved one’s condition worsens. Emotions may be harder to handle some days than others, and they may change by the hour or minute. The person with dementia is simultaneously on their own journey through stages of grief and loss, so both patient and caregiver need support.
Related: Five Strategies for Easing Caregiver Stress
Grieving for the living
One of the most challenging aspects of caring for a loved one with dementia is slowly losing them as their mental faculties decline though they’re still alive. This separates dementia grief from grieving after death and is believed to cause even greater stress on caregivers, according to a study published in the American Journal of Alzheimer’s Disease & Other Dementias.
This is why dementia caregivers, especially partners, are at a greater risk of developing mental or physical health issues themselves. Dementia grief can also lead to what is called “complicated grief,” with difficulty resolving the loss when a loved one eventually passes away.
Kristie Wood, Ph.D. says in the Monitor on Psychology, “As dementia progresses, adult children may also struggle with the sense of feeling forgotten once the parent no longer recognizes them.”
Other family members can have trouble coping with this aspect of the disease. One teenager wrote about her struggle in visiting her grandmother with dementia – the young woman wants to visit, but the visits are painful. “She’s at a more advanced stage now and can’t walk or feed herself, and she forgets who we are sometimes, which is hard for all of us,” she wrote. “I love her so, so much and she was such a big part of my life, but now I can barely get through visits without breaking down.”
Tips for managing dementia grief
- Accept your feelings, both positive and negative, and acknowledge them.
- Prepare to experience repeated feelings of loss as your loved one’s disease progresses.
- Talk with someone you trust about your feelings: a friend, another caregiver, or a professional counselor.
- Take care of yourself and try to create balance in your life by doing things that bring you joy and comfort and by giving yourself time to rest.
- Ask for help when necessary and accept help when it’s offered.
- Fight isolation and loneliness by spending time with family and friends.
- Join a support group, locally or online.
- Don’t worry if some people don’t understand your grief – they may not understand that it’s possible to grieve for someone who is still living.
- Recognize when it may be time to enlist professional in-home care services or move your loved one to a memory care facility.
In a sense, a person in later stages of dementia has already passed away. The person you loved, laughed with, spent time with – that person may seem far away. Under such conditions, grief is understandable. Follow the tips above to manage dementia grief and show yourself the grace you deserve.
Related: Is It Time for Memory Care?