When you care for someone who has Alzheimer’s or another form of dementia, caregiving and grieving happen at the same time. A study out of the University of Indianapolis shows that grieving starts during caregiving for caregivers of dementia patients because loss is felt as the disease progresses.
In a situation like this, you watch as your loved one slips away —of course you’re sad, and that’s absolutely normal. Psychologists call the kind of grief that we feel while we care for the terminally ill Anticipatory Grief. This is feeling the pain of losing a loved one before the loved one is actually gone.

It’s not surprising that dementia caregivers would experience these feelings, but this study is among the first to explore and document them.
More than 400 caregivers were surveyed—most of them spouses and adult children of Alzheimer’s patients.
There were asked to respond to 100 questions. One of them was, “What would you say is the biggest barrier you have faced as a caregiver?”
Narly 80% of the answers had something to do with the idea of “the sadness associated with losing the loved one.” Other top responses revolved around:
— the patient’s difficult behavior
— not enough community and financial support
— trouble commmunicating with the patient, other relatives and medical professionals
— losing personal time and freedom
Experts are using information from the study to create new services for community agencies that offer help for caregivers.
One other thing to come out in this new research: many caregivers included personal notes with their responses, expressing their gratitude for the opportunity to express their feelings, saying they don’t often feel like they can talk about the issues that bother them.
In the presentations I give to caregiver groups, I find the same thing. Please don’t keep your feelings bottled up. If you don’t feel you can reach out to anyone around you, I’d love to hear from you.
j.