Dementia and Host Mode

What is Host mode? When a person with dementia is able to appear completely lucid and hold a normal conversation for a short period of time, making it seem as though their dementia isn't as advanced as it really is.

Oh, the nasty surprises that dementia brings to the table.

If you've ever walked out of a doctor's appointment wondering, "Did they even see what I see every day?", you're not alone.

Here's the thing—your loved one can appear completely lucid and coherent in front of others. mum (and I'm sure many fellow caregivers can relate) had an incredible ability to hide the symptoms of dementia, especially when she was around medical staff, friends, or relatives she didn't see very often. She was trying to convince them—and perhaps herself—that she was still "fine." I often saw it as her fighting the dementia; a survival mechanism, of sorts.

It took a huge amount of mental effort to maintain that façade.

For many people, host mode only lasts for a short time, but mum could keep it up for several hours. As her dementia progressed, this ability became shorter and less frequent.

Not surprisingly, medical professionals (in my experience, anyway) would often think I was overreacting. After speaking to her for just five minutes, they'd say, "She looks fine."

I think this mirrors what many of us do in life. How often are we truly ourselves? We tend to be on our best behaviour most of the time—that’s what we’ve been taught. The facade. Everything is OK. We're not falling apart inside. At least that's what we want people to believe. And most do. And in our family, mum always said, never show your weakness. She believed you should never let anyone know what you're going through; you just deal with it. I get that. And I relate to that to this day. I think a lot of you will too.

I remember during her morning church routine, she would leave right away because she knew she couldn’t hold a conversation. When she saw the neighbours, she would stop for 5 minutes and then leave.

And when my brother visited... oh boy. She desperately wanted to appear fully coherent in front of him. She managed to do this for nearly a year. (I also don't think he wanted to see it.)

But after he left—when it was just me and her—her true self would emerge. He visited every three months for about two days, and I knew that after those two days, there would be a tornado to clean up. The exhaustion from keeping up host mode left her more confused, angrier, and more defiant. I had a list of tasks to tackle as soon as he left. The carer and I would be in full overdrive for at least the next week trying to get her back on track.

Each time mum slipped into host mode, I noticed she would go downhill afterward, as I knew the efforts left her more drained and depleted. It broke my heart in a way. Her wee brain worked so hard to hide the dementia that it completely exhausted her. Looking back, I came to see it as her survival technique. At first, I couldn't understand why she was doing it. I could see the dementia progressing every day, so how could she hide it? I think she was frightened and doing the only thing she knew how to do—holding on to the person she'd always been for as long as she could. Once I understood that, I found it easier to respond with more patience and less frustration. I talk more about this in What I Learned About Dementia Behaviours.

People who haven’t cared for a loved one with dementia would always say, “It’s just old age…” or “She seems fine to me…” But those who've been through it can see the reality right away.

Some tips on how to deal with Host mode:

Plan for the Crash: Try and anticipate the "crash" after social interactions. You'll know what or who can trigger it so plan quieter, low-drama days following events, visits or medical appointments to allow your loved one to rest and recover. You could go back to the same familiar routines as soon as possible or comforting activities to help ease any frustration or confusion.

Limit the time, if possible: Once you know the triggers that lead to host mode, such as social visits or doctor’s appointments, try and limit the length or intensity of these events. Shorter, more frequent interactions might help. No-one around me wanted to help or support this, so it never really happened. Hopefully it may work for you.

Communicate with Others: Helping family and friends understand. In my experience, I tried and tried but mum was so good at fooling everyone that everyone thought I was overreacting. You can only do so much. I also tried explaining it to medical professionals. As you can imagine, that didn't go down particularly well.

Encourage Breaks: Sometimes I would say I needed a break and have mum join me. Either for a walk or a nap or just to step away from all the people around us. I would notice her getting worn out and would ask her to "support" me and come with me. Sometimes it worked. And she would rest and reset and it would prevent the exhaustion from maintaining the façade.

If you've experienced host mode too, I'd love to hear how you've managed it. Share your tips below.