Ken Kast and Frances Saldaña
HD-CARE Board Members
Prolonged Grief is a novel diagnosis. It was officially included in the 2021 update to The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR). Prolonged Grieving Diagnosis (PGD) is diagnosed when acute grief stays distressing and disabling beyond 12 months of bereavement.
There are many families who experience heartbreaking loss of family members along with a feeling of extended grief. That is not uncommon, but what distinguishes bereavement and grief in Huntington’s disease (HD) family members is the generational cycle of grief that HD presents because, with HD, the children of an affected parent have a 50/50 chance of inheriting the mutant gene for HD. For HD family members, it is especially difficult after a child has passed from juvenile-onset HD.
Bereavement and grief are usually measured from the time someone passes. But with HD, the patient’s cognitive and physical decline may appear 10 or 15 years earlier, and family members are watching their loved one disappear day by day. Death is neither the start nor end of grief; it is a milestone in a very long-running pain and, often, just as the healing from one generation of HD starts, another HD family member may test positive for the disease, and the grieving cycle repeats itself. In addition, a person suffering from this diagnosis may be carrying an immense and invisible burden, and one that is very personal to them and not very easy to discuss.
Nothing can compare with the burden and suffering that an HD patient bears, and caregivers, in their desire to provide as comfortable and meaningful a life for someone with HD as possible, often feel like they are running a never-ending marathon. There is still no treatment for HD patients but changing one’s patterns of behavior can help grieving HD family survivors. Caregivers need to stop and look after their own well-being, too, and find time for respite. Enrolling in a support group can rapidly help with the healing process. Social interaction is extremely healing. Staying well informed and on top of scientific breakthroughs and participating in educational programs for HD families are all activities that can help the HD family find the end to prolonged grief. Ironically, many HD family survivors may become stronger, appreciate life, family, and friends even more when they reach out to a supportive community.
That is the vision that the HD leadership in Orange County had when they founded HD-CARE at UC Irvine. The name, HD-CARE, describes the mission: Huntington’s Disease Community Advocacy, Research and Education.
These references provide more information about the definition of Prolonged Grief Disorder and what the implications are for it to be added to the DSM.
- Prolonged Grief Disorder – HD-CARE blog post
- Prolonged grief disorder in section II of DSM-5: A Commentary
- Prolonged Grief Disorder: Understanding the Latest DSM-5 Updates.
- DSM-5 Adds Prolonged Grief Disorder Diagnosis and More
Many thanks to the researchers, supporters, patient advocates and the volunteers who recognized the weight of the challenges HD families carry and joined us on our mission to end Huntington’s disease.