‘Prolonged Grief Disorder’ Impacts 3 Million Older Adults

PGD is not depression and it can be overcome, said panelists who shared strategies at a recent symposium.

When Jane Nichols’ husband died Dec. 7, 2020 of COVID 19, his death ended a long road of decline and pain: Carroll Nichols had been diagnosed with dementia/Alzheimer’s in 2010.

She then began the uncertain road to recovery from her grief over her husband’s suffering and death.

“I had a head start because of Carroll’s Alzheimer’s/dementia. I was used to seeking support during that period to help me cope with him. My doctor put me on a mild antidepressant; and that helped.

“But I had considered suicide. The thought kept going through my head, ‘You know if I died today or tomorrow, it would be just fine, I wouldn’t mind.’ That was an eye-opener for me. I realized I hadn’t taken care of myself and hadn’t been using the people who wanted to help me in my grief,’’ Nichols said.

Nichols said she gained strength when she realized that she was groping toward recovery in her own way, “and that that was okay.’’

No Single Path

Panelist Erica G. Srinivasan, associate professor of psychology at University of Wisconsin – LaCrosse and director of the Center for Death, Grief and Bereavement Education, applauded Nichols for understanding that each person grieves uniquely and that there is no single path to returning to what another panelist called “normal.’’

“It’s really important to keep an open mind, like Jane, and know that there are different approaches and to try different things and to not judge oneself,’’ Srinivasan said.

Nichols said being a member of a self-help group of people whose spouses had died helped, too. They talk through Zoom meetings. She also took a 10-week course in coping with grief, where attendees were open and revealing about their experiences with grief.

Nichols and Srinivasan participated in the session “A Look at Grief and Loss Through a Lens of Hope” at the National Council on Aging’s recent 5th Annual Older Adult Mental Health Awareness Day Symposium. Shari M.-Ling, M.D., deputy chief medical officer, Centers for Medicare and Medicaid Services, moderated the session.

They were joined at the virtual event by M. Katherine Shear, M.D., a professor of psychiatry and founding director of the Center for Prolonged Grief at Columbia University. Shear focuses on understanding and treating people with persistent and intense grief.

Prolonged Grief Disorder

In September 2021, based on three National Institute of Health studies of the clinical research done by Shear and her colleagues into therapy for loss, the American Psychiatric Association approved inclusion of Prolonged Grief Disorder (PGD) into the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders).

Shear said an estimated 3 million older adults have PGD, which has many versions but should be distinguished from depression.

“PGD is a continued, intense yearning, longing and preoccupation with a person who has died. It is really different than the usual grief. What we are saying is that more than a year after the death there is continuing preoccupation with the deceased. And yearning for that person takes up pretty much all of the person’s mental space.’’

No Good Days for Years

With Jane Nichols’ form of grief, there are good days and not–so-good days; with PGD, Shear said, “there are no good days for years and years, and that is really quite different.’’

Unlike Jane Nichols, PGD sufferers struggle to re-engage with people and projects for years.

To wit, the story of a woman known only as Ginny, who was in her 50s when her husband died, 20 years ago. In a video shown at the symposium, Ginny, dressed in a suit, describes going to work, coming home, flopping on a couch and crying until she fell asleep. She repeated this until she sought treatment. In a newer video, Ginny is smiling and chatting with friends. Shear said Ginny has become a passionate political activist since her “return to normal.’’

Grief Evolves, Treatment Helps

Shear said PGD treatment can include intervention, medication and therapy.

“Grief is not something we completely resolve: it is long lasting but it finds a place in our life, as Jane described. Grief changes over time, and not in defined stages or in a predictable way. It is unique to every person. It’s the form love takes when someone we love dies.‘’

Grief is so complex, Shear said, that it is typical to both want it to go away and also to hold onto it.

“We hold two thoughts at the same time: We want to move on but we want to not move on,’’ she said.

Nichols agreed, saying that she knew popular wisdom says that after so many months, it was time to move on but “there are no timelines for grief. As Shakespeare said, ‘Everyone can master grief, except those who have it,’ ‘’

The Death Café and Mourning Walks

Srinivasan said openly acknowledging grief can help in the process of healing, as Jane Nichols discovered in her self-help group and with her six children.

“We need to name grief so people can talk about it. One way to express grief is through something like the Death Café, which started in the UK, and was first in the states in Columbus, Ohio, where I grew up, so I like to give it a shout-out whenever I can!

“It’s a place where people gather — it can be anywhere — with strangers who have a common grief. They gather to talk about death. Anytime that I go, someone says “I have never said this to anyone before,’ but there, you can share your grief.’’

She said Mourning Walks have become popular with those who want to be active and honor their loved one by walking with others who are grieving.

“It doesn’t have to come through by talking; it can come through silently from walking.’’

Grieving Trees and Six-Word Memoirs

A friend in Portland, Ore. sent Srinivasan a photo of a grieving tree, where mourners write notes to their loved ones and tie it to the tree.

“It’s a great way for the community to share: The picture shows how we are all connected through loss and grief and helps us to not feel so isolated.’’

Srinivasan also recommended writing exercises that help to express grief and sorrow. “You could write a six-word memoir: write down in six words how you feel when someone dies; in the process, writing can help get you unstuck.’’

Spending even two minutes a day thinking and writing about the emotions of grief can help, Srinivasan said.

A New Role

Jane Nichols said she does not want to be the person she was before her husband died.

“I am making new roads in my widow-walk, finding out what this new me is all about. I don’t want to go back to the old things; old responsibilities. That will bring back too many memories. The way it is, is okay.’’

Nichols was asked to run for a position on her condominium’s board but demurred, because she didn’t trust her memory.

“In the end I said yes, and I was duly elected last October. It’s taken me six months but I am finally beginning to enjoy myself in this role; it’s reawakening my brain, which is being challenged.

“Physical activity is good but I still have to work on that one!’’

Shear said PGD sufferers need to “restore their capacity for well-being. They need to get interested, to restore a sense of competency and ability to do things, an impact on the world. That tends to be lost when someone dies; there is a sense of not mattering.’’

Ginny, whose PGD lasted for years, said her successful treatment enabled her to take classes and make new friends.

“After the 16 week-treatment, I am feeling wonderful,’’ Ginny said in a video, 20 years after her husband’s death.

In a four-decade career in journalism, Eleanor O’Sullivan has reviewed many books on best practices for financial advisors, has written for Financial Advisor and the USA Today network, and was movie critic for the Asbury Park Press.

 

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