Quick Clips From an Acadia-Sponsored Symposium at AAIC 2019: Supporting Caregivers

DR. CUMMINGS: And Linda, I was struck by your articulation of a lot of unmet needs, particularly from educational point of view. So it’s not just the medication but it’s really understanding it. Some management help, that sort of thing. So what’s your view of the unmet need situation?

MS. GREGORY: Well, I didn’t really know what I was anticipating when she got this Alzheimer’s diagnosis. So it would have been nice if the doctor had sat down with me and explained where we were going, even if it wasn’t a hard-and-fast rule. But to have a general idea of what kinds of things to expect or how to deal with them.

It’s important—to me at least: It would have been wonderful if we could have—if people could understand that part of treating this illness is stabilizing it. Even if we’re not improving the memory loss, just to stabilize it so that—I’m sorry.

It’s important to stabilize it, because the patient has to be stabilized emotionally as well. So when you have this instability in what’s happening physically, you’re constantly off guard. You can’t get any kind of emotional stability, so those 2 things kind of go hand in hand—at least they did for me. And as a caregiver, it was extremely stressful to see my mother always off-balance. You never know what’s coming, and your loved one’s irrational and irate, and it’s very frightening.

I’d also hope that families could be better prepared practically to know what to do to better equip themselves for the future road that they’re going to have to go down.

I don’t really know where I’m going from here with my mom. I just know it’s day-to-day, and I’m really grateful to have been here with so many people that care so much, because I really did not receive a lot of structure or guidance from the professionals that were caring for my mom. So it’s been nice to see that there are people out there who truly care about the caregivers, the families, and the patients.

Faculty

Cleveland Clinic Lou Ruvo Center for Brain Health
Las Vegas, NV

Additional Contributor(s)

Caregiver of her mother, who is living with Alzheimer's disease dementia and experiencing hallucinations and delusions

Faculty Insights

I feel it is my responsibility to help patients with dementia, family members, and caregivers to understand and address symptoms of psychosis.

—Simon M. Sheard, DO