When it comes to Alzheimer’s disease, grieving begins with the diagnosis. People living with dementia become less themselves as the disease progresses, which may make them and their loved ones feel like they’re experiencing many losses along the way.
You may experience the loss of who they used to be and their once-familiar and warm personality. The loss of the relationship you once had. The loss of shared memories. The loss of their independence and your sense of self.
It’s normal to emotionally mourn the loss of your loved one’s life before they even die. This is called anticipatory grief, an emotional response to an expected and inevitable loss. The grief begins before the death occurs, and in cases of dementia, the grief often progresses with the disease itself until the end of life.
Grief is a natural reaction to any loss, but those who experience it with an Alzheimer’s disease diagnosis are likely familiar with the specific experience of “phased” grief.
“[Anticipatory grief] adds to the confusion of the loved one still being alive,” says Karen Bookman Kaplan, hospice chaplain at Center for Hope Hospice. “You might ask yourself how you can be grieving when the person is still here. Or you might understand that it’s confusing and, in some respects, your loved one is already partly gone.”
This confusion can add to the complexity of navigating a diagnosis you and your family still have to live with for the unforeseeable future. If you’re caring for someone with Alzheimer’s disease or dementia, you may be familiar with this type of grieving experience.
“Grieving is often a much messier process than we think, especially when the loved one has Alzheimer’s,” Kaplan adds. “There is a notion in society that grieving comes in a neat, orderly fashion: a loved one dies, and then grieving commences. But if your experience of grieving is out of sync with that perception, the people around you could very well not be tuned in to what you are experiencing or even misunderstand your feelings altogether.”
In this article, Kaplan and other grief and dementia experts discuss anticipatory grief and the unique experience shared by families navigating Alzheimer’s disease. They share what anticipatory grief might look like and how and where caregivers can seek support to cope with a complicated loss experience.
Caregivers’ anticipatory grief & Alzheimer’s disease
The Caring for the Caregiver program of the School of Nursing, UT Health San Antonio, supports family caregivers through education, research, and practice. Program manager Sara Masoud, PhD(c), MPH, says anticipatory grief is a common experience for individuals and families with an Alzheimer’s disease diagnosis because it’s related to the expected loss of typical cognitive capacities, autonomy, and relationships, among other changes.
“Given the lack of effective treatments or cure for dementia, families are often faced with the need to navigate the grief of less tangible forms of loss, like personality changes related to a diagnosis,” she says.
Masoud says anticipatory grief is a normal and common experience, but it can look different for everyone.
Many people feel anxious or fearful about impending changes and unknowns related to dementia progression and its impacts on themselves and their families. Most people feel anger or sadness. Some people withdraw, isolate, and struggle to open up and express their feelings. Others may try to discuss their feelings and devise a plan to cope with potential losses.
Kaplan also reminds caregivers that grief is not a “one-size-fits-all” phenomenon.
“The first step for [coping] as a caregiver is to be aware that your grief can work like this; you do not have to fit into the stereotyped view of grief as starting only after your loved one passes,” she says. “No one should make you feel strange or deny your feelings as legitimate if your grief follows a different pattern from the expected norm. No one should imply that grieving before death or the funeral is wrong.”
What does anticipatory grief look like for caregivers?
Melinda Stroda is a Care Coach at Cariloop, a comprehensive caregiver support platform that combines easy access, cloud-based tools, and personalized professional coaching services. She explains that when someone is faced with the anticipated death of a loved one, their symptoms can encompass a range of emotions, thoughts, behaviors, psychological symptoms, and physical effects, much like the typical symptoms experienced during any other grieving process.
“It is important to understand and acknowledge that anticipatory grief is a normal response to a difficult situation — often a situation someone is experiencing for the first time.”
In some situations, Stroda says, people are reliving previous losses or grieving several losses. “Grief is not an isolated experience. When we experience anticipating a loss, it can trigger memories of past losses, causing us to grieve not only the current loss but also all the losses that preceded it.”
Charlotte Nuessle, a certified yoga therapist at Growing in Wellness, explains that our nervous system naturally responds to anticipated loss by protecting us in one of two ways: fight or flight.
“We have difficulty recognizing and accepting we need help, that we aren’t supposed to go through this alone,” she says. “We need others that we can count on, yet when we are in a protective response ourselves (fight or flight), others seem like a threat.”
Nuessle gives examples of common ways fight or flight reactions may manifest with anticipatory grief:
- Getting more irritable or easily shaken by small things you used to manage without trouble, maybe even mistakenly blaming your loved one for them
- Feeling ashamed, as though there was something you could do to prevent your loved one’s decline
- Trying to be perfect or push yourself out of concern for extending your loved one’s life
- Experiencing physical side effects like headaches, muscle tension, and interrupted sleep
- Expecting more out of yourself than you can realistically do
Managing anticipatory grief’s emotional and physical symptoms can be complex and challenging for many individuals, but it’s an important part of a healthy coping process.
How can you cope with anticipatory grief?
Coping with anticipatory grief can be challenging and feel isolating, but several strategies can help:
Be gentle and patient with yourself.
We all cope with anticipatory grief differently, so it’s important to find what works best for you. Remember to be patient with yourself, give yourself grace, and allow yourself time to grieve.
“Grief is not a linear process, and there is no timeline for how long grief lasts or how you should feel after a particular amount of time,” Stroda says.
Talk with professionals.
It’s important for people experiencing dementia-related anticipatory grief to talk to their primary care provider for resources and guidance and seek professional counseling to develop coping strategies and treatment as needed.
“Seeking support from a mental health professional can assist individuals in processing these difficult emotions and grieving in a healthy way,” Stroda adds.
Build a strong support system.
Seek support from family, friends, or other caregivers. Kaplan says it’s best to surround yourself with people who have experienced or at least intuitively understand and accept it as part of your grief journey.
“Talking to trusted friends and families can help individuals experiencing anticipatory grief to process, develop coping skills, and prepare for their future related to dementia,” Mousad says.
Find balance by accepting help and practicing self-care.
Nuessle encourages caregivers to be honest with themselves when things have become challenging, and they have lost their balance.
“Admit that this new situation is harder than it used to be. Our strength comes from our vulnerability to accept what we cannot change,” she says. “Instead of pushing ourselves, begin to accept what’s hard. We can learn to gently tolerate anticipated loss and give ourselves — and our loved ones — comfort and support to ride through the ups and downs of change.”
She says doing little things often is key to returning to balance when you’ve been thrown off.
“We can find ways to nourish our souls through uplifting experiences. We can connect with ourselves through time in nature, sitting comfortably in a rocking chair and watching the birds out the window, feeling the breeze on our skin, finding art or music that speaks to us, sipping a warm cup of tea, or soaking in a warm bath.”
She reminds caregivers and families that anticipatory grief shows us how much our loved one means to us.
“[Anticipatory grief] gives us the privilege of more time together to let them know we love them and opportunities to accompany them into uncertainty as best we can, moment to moment. Our shared love will go on after their death. Though we may sense the closing of their life journey, paradoxically, another one begins as we open ourselves to the reality of change and uncertainty.”