Which stage is caregiving the hardest?

All of the stages are difficult for that same reason that you’re really grieving the loss of the person you once loved who’s still here but not the same. I think what is so difficult about this disease is that often that person was your support system and so the person is no longer able to be reciprocal in that way again, not because they’re selfish or they don’t care about you, but as memory fades they just no longer have the capacity to do that. So I think in the beginning stages that can be really difficult as you’re defining a diagnosis and figuring out a plan. Often, the moderate stage or the middle stage of the disease can be incredibly difficult in that it’s not just an emotional challenge whereby the caregiver is taking over the other person’s responsibilities, they’re taking care of their person with dementia. Also in that stage, the person has started to decline cognitively and functionally, so now I’m having to do some hands-on caregiving and that’s probably more uncomfortable for most people than anything. On top of that, in the middle stage is where we see most of the behavioral disturbances. We’re going to see agitation, disorientation, belligerence, anger, even some suspiciousness or paranoia. It’s in the middle thing that can be incredibly difficult for caregivers to navigate when their care load and their plates are already quite full.