When loved ones die, the loss can leave some people with extreme and unhealthy grief. That kind of debilitating grief is called "complicated grief," according to Kathie Supiano — a clinical social worker and program director of Caring Connections, a bereavement counseling program.
The Alzheimer's Association awarded Supiano a $99,000 New Investigator Research Grant to help those experiencing complicated grief — particularly long-term dementia caregivers.
"Grief itself is not a mental health condition. It's an event that's going to happen in almost everyone's life," Supiano said. "There are people, a subset of people, for whom grief is actually disabling. That when the death of a certain person happens, their life kind of stops."
Although Bonnie Shepherd did not experience complicated grief, she understands how difficult it is to care for someone with dementia and the challenges that come with it. Her husband was diagnosed with frontotemporal dementia in 2007 at age 72. He died in 2011.
"You're slowly losing that person," she said. "That's why they call it the long goodbye."
Shepherd said with dementia, she slowly lost her husband mentally and emotionally and eventually lost him physically.
"All death is difficult," Shepherd said. "The part that makes it difficult in the long goodbye is the exhaustion and the caregiving that goes into it. It's a 24-7 job."
Supiano researched grief two years ago by evaluating adults over age 60 who met the criteria for complicated grief. In her study, she cited journals that indicate that as few as 7 percent and as high as 20 of grief suffers (involving all kinds of losses) experience complicated grief.
Those who experience complicated grief will find the grief disrupting their ability to function at work or in their family, Supiano said. They have recurring or intrusive thoughts of the person who died or the circumstances of their death and find themselves withdrawing from other social relationships they used to enjoy.
She identified two sub groups that complicated grief group therapy, a 16-week psychotherapy program, was most effective — long-term caregivers and people who lost someone to suicide.
"Those are really difficult kinds of death," she said. "They're experienced traumatically by some people. And so that's why we're studying both of these populations."
Ronnie Daniel is the executive director for the Alzheimer's Association, which provides funds to research dementia and Alzheimer's throughout the world. Some of that research focuses on the caregivers.
"Caregivers that have been working with Alzheimer's sufferers for many years, they spend their whole time, day in and day out, 24-7, providing care," Daniel said. "Now that person's passed away. That adds even more to the grief that people feel when they lose that loved one that they've been caring for for so long."
Supiano said those with complicated grief need a more therapeutic approach, like the complicated grief group therapy, rather than just a support group.
She said a "series of precise interventions help them not just not grieve, because we view grief as healthy, but to get back to a healthy grief process."
The 16-week psychotherapy goes beyond that of a support group. Supiano said she educates participants about grief and discuss the details of the death, their relationship with the person who died, memories they have of the person and the circumstances of the death. She said they also set active goals.
Shepherd hopes Supiano's research will help caregivers take care of themselves and accept that their loved one has dementia.
She hopes to tell other caregivers: "This is going to be a long process, and in order to survive this long loss, you've got to take care of yourself as you move through it."
"It's an honor to be a caregiver," Shepherd said. "It is, for someone that you love. I knew I was exhausted but I knew he would take care of me and I took care of him."
For those who feel they are experiencing complicated grief, Supiano encourages them to call Caring Connections at 801-585-9522 for a short phone screening. Those who meet the criteria for complicated grief are invited to take part in the research study group.
The center also provides support groups for those grieving after any kind of loss.
Alzheimer’s Support Group is designed to provide emotional, educational and social support for caregivers through this online forum and also through regularly scheduled meetings. The meetings in person meetings are held at Bel Aire Senior Living, 1088 East 390 South, American Fork, UT 84003 every 2nd Tuesday of each month from 4:00 – 5:00 p.m.
We also provide free respite care for your loved one in our facility while you are in the meeting to make things as easy as possible for you.
Find out more about our Alzheimer’s support group click here