When it comes to grief, there are several overlooked grief experiences where those who are grieving aren’t receiving the support that they need. That’s why we turned to the University of Wisconsin-La Crosse Psychology Professor Erica Srinivasan for some insight.

She teaches courses on a variety of topics, such as aging, death, and grief and is the co-chair of the University’s gerontology emphasis and director of the Center for Death, Grief, and Bereavement. Through these roles, she strives to increase community awareness and support through organizing death and aging cafés, international death, grief, and bereavement conferences, and conducting research.

Specifically, her research focuses on assisted death. She conducted a qualitative study on the grief experiences of families who had a loved one die under Oregon’s Death with Dignity Act. Additionally, she studies younger-onset dementia and the losses experienced by those diagnosed and their loved ones.

We asked her a few questions about assisted death and younger-onset dementia to gain a better understanding of these grief experiences and how to show your support.

Assisted Death and Grief

What are some common feelings and emotions to experience when grieving the loss of a loved one by an assisted death?

In many ways, grief following an assisted death looks similar to grief following any mode of death. Regardless of the mode of death, people experience common grief reactions such as sadness, anger, fatigue, crying, and sometimes relief that the loved one is no longer suffering. However, there are some aspects of grief that are unique to an assisted death.

In my research, I’ve found that grievers tend to reflect on their level of agreement with their loved one’s decision to die an assisted death. When family members agreed with their loved one’s decision, grief was eased. They felt good about the open conversations about the assisted death process. They appreciated how the option of an assisted death brought their loved ones a sense of control, the potential to avoid prolonged suffering, and a safe and legal way to die, potentially avoiding other options, such as a suicide completed in secrecy, without safeguards.

When grievers disagreed with their loved one’s decision, or felt some conflict about the decision, they had to cope with feelings of guilt and self-blame, which included wondering if it was the right decision to support their loved one, if it was an acceptable practice according to their religious tradition, and if they were causing their loved one’s death.

Stigma was another common emotion that came up when experiencing the loss of a loved one by assisted death. Although most of my participants had someone with whom they could discuss the mode of death if they needed to, most were also aware of the national controversy over assisted death, and the fear of judgment or disapproval from others made them hesitant to disclose the mode of death in public settings and support groups. Participants who came from towns and families with greater disapproval over assisted death felt greater stigma, which caused them to hide the mode of death. This negatively impacted their ability to fully express their grief.

How does grief following an assisted death differ from grief following a death by natural causes?

One of the main differences between an assisted death and a non-assisted death from a terminal illness is that with an assisted death the specific timing of death is known. This has implications for anticipatory grief, as well as for grief post-death. With an assisted death, there is unique anxiety with anticipating the scheduled date for the death and the moment of death. This anxiety is different from that when a loved one dies from a terminal illness without the assisted death process, where there might be a sense of when the death will be, but there is not a specific scheduled time of death to anticipate.

Alternatively, knowing the moment of death allowed grievers not only a time period to say goodbye and address unfinished business but also a specific moment to say a final goodbye. Knowing the moment of death also allowed the person seeking the assisted death and their family members the opportunity to invite others to attend the death, choosing who would be present for immediate grief support.

Are there any specific coping mechanisms you recommend for someone grieving the loss of a loved one by an assisted death?

Because of the stigma around the topic of assisted death, some grievers may experience disenfranchised grief and might have difficulty openly expressing grief with others. In this case, I would suggest seeking one-on-one grief support and working to express grief in other ways, such as through writing.

As I mentioned, one emotion that some grievers of an assisted death experience is guilt or self-blame related to a sense of conflict over the loved one’s decision to use assisted death. This might not work for everyone, but some of my participants suggested talking with religious leaders if they felt religious conflict over the decision to use assisted death. Others worked with grief by recognizing that because their loved ones had a terminal illness (a requirement to use the Oregon Death with Dignity Act and other assisted death laws in the U.S.), death was not optional and that whether or not the assisted death law was used, their loved one was going to die.

What resources are available for those who are grieving the loss of a loved one by an assisted death?

Three resources that come to mind are Compassion and Choices, Canadian Virtual Hospice, and kidsgrief.ca. Compassion and Choices is an advocacy organization for end of life choices and has information about assisted death laws in the U.S. and stories from people who are grieving a loved one’s assisted death. Additionally, they have stories from people who chose an assisted death, which may give grievers deeper insight into the motivation behind an assisted death.

Canadian Virtual Hospice is considered to be the most comprehensive online resource, providing extensive information, education and support for professionals, family and community members on end of life topics. Their research articles and discussion groups are potential outlets for understanding grief and connecting with other grievers. The Canadian Virtual Hospice also runs the site kidsgrief.ca, which has a helpful learning module about discussing medical aid in dying with children. Books written by people grieving an assisted death of a loved one can also be helpful.

Younger-Onset Dementia and Grief

What are some healthy ways to grieve and come to terms with your diagnosis when you’re living with younger-onset dementia?

Coping with a younger-onset dementia diagnosis (also sometimes referred to as early-onset dementia) is an ongoing process, as new and changing symptoms occur, accompanied by various and changing losses. Coping skills will vary, depending on the specific loss. For example, with memory loss, practical approaches like having a calendar or writing down notes on a board that is prominently displayed seem to initially help.

One major emotional aspect of the diagnosis is the realization of the uncertainty involved with the diagnosis. Uncertainties include what the rate of memory decline will be, how and when abilities such as working, driving, participating in hobbies and taking care of oneself will change, how relationships will be impacted, and how one’s future will look.

Accompanying all of those uncertainties is the loss of identity or a changing sense of self. Grief expression and social support seem to be two ways that are helpful for coping with these multiple losses that stem from the diagnosis. Grief expression can include expressing emotions out loud to oneself or another person, in a support group, or through writing. In families, it can be helpful to openly discuss fears and concerns as a starting point for addressing them. Having a counselor and social worker can also be helpful for grief expression, support, and resources. Meeting with others who also have a younger-onset diagnosis can also help with gaining support and resources, as well as feeling less isolated. This is particularly important as there are overall fewer formal resources and outlets for support for people with younger-onset dementia as compared to those for people with later-onset dementia. Additionally, people with younger-onset dementia face issues that are unique to their age, also making it very important to connect with others who are coping with the same diagnosis.   

In La Crosse, Wisconsin, Amy Brezinka runs Club Connectivity, a social group for people with younger-onset dementia. The goal is not necessarily to discuss the diagnosis but to have a safe space to socialize and do activities with a group that you know understands dementia from experience. It provides social support, meaning, and engagement. Participating in meaningful activities and identifying sources of meaning is another approach that can help with coping with the many losses that people with younger-onset dementia experience.

For example, several participants I spoke with found meaning in advocacy work and educating others to decrease stigma around younger-onset dementia. Finally, acknowledging that feelings, skills, and energy levels will vary each day can be helpful to give oneself permission to change the schedule for the day.

Can you describe what the grieving process may look like for someone since it begins before their loved one’s death?

As people with younger-onset dementia are coping with multiple losses, similarly, their family members and friends are coping with multiple losses. They grieve each loss that their loved one faces and the accompanying frustration that their loved one might be experiencing with those losses. Together, with their loved one, family members might grieve changing hopes and dreams or losses of shared hopes and dreams.

The loved one with dementia will change as the disease progresses, and so relationships with the loved one will change. Family members might grieve the loss of the person they used to know and learn to hold the ambiguity of grieving the person they knew, navigating the “new” relationship with a person with changing traits and anticipating future changes in their loved one’s identity. Children of the person with dementia might have particular concerns about inheriting a gene for the disease and also grieve the loss of future moments with their loved one.

Are there any specific coping mechanisms you recommend for someone living with younger-onset dementia and for their loved ones?

For anyone who is coping with a challenging situation, I would recommend expressing grief. It is important to remember that there are a variety of outlets for expressing grief, such as one-on-one counseling, group support meetings, and online discussion boards.

It’s also important to remember that grief expression does not have to be through speaking or through sharing with others. Writing can be a very powerful tool for expressing and working with emotions. Connecting with others who are living with younger-onset dementia or supporting someone with younger-onset dementia can help with building resources and feeling less isolated.

What resources are available for those who have been diagnosed with younger-onset dementia and for their loved ones?

Organizations such as the Alzheimer’s Association have information about younger-onset dementia on their website. I would also suggest exploring local county aging services, Aging and Disability Resource Centers, and local hospitals, which might offer support groups both for the person with younger-onset dementia as well as family care partners. I think the innovative approaches of Club Connectivity in La Crosse, Wisconsin or Paul’s Club in Canada, which provide caregiver respite and a social outlet for people with younger-onset dementia, are valuable and unique.

Last, people living with younger-onset dementia are the best people to turn to for understanding what it is like to live with this disease and the best ways to cope. There are many valuable blogs and books written by people with younger -onset dementia that give valuable insight into this condition!

What are your thoughts on these grief experiences? Share them with us in the comments!