Ask Dr. Lisa: "Denial" in Dementia

Once a month, I'll answer your questions about dementia and care-giving here in my blog. If you've got a question, feel free to submit it.

Question: My dad has been formally diagnosed with Alzheimer's but he is in denial and thinks his poor memory is normal aging, despite his CT scan and memory test proving otherwise. He won't fill out any Power of Attorney forms, but we need to get those in place. How can you help someone in planning for their future and just general day-to-day living when they're in denial about their condition?

It's a tough situation you're in, and I'm sure it's often frustrating and even maddening to feel like he won't see eye-to-eye on this.

First, I wanted to address the concept of denial with Alzheimer's. A common feature of Alzheimer's is that the person loses the ability to have insight into how their own mind is working. There's even a name for it: anosognosia. It can seem like such a strange idea because we live our lives assuming we can trust our concept of how our brain is working...but in Alzheimer's, this is often not true any more. It might not be that he's in denial about it, but that he legitimately can't tell how his brain is doing.

To see it from his perspective, if he feels like he's fine, then it would be very frustrating to him to feel like people are trying to force him to do things he doesn't think he needs to do. I'm guessing when you are all talking about Power of Attorney forms, there's a chance that it's setting off a big power struggle with him, because what you're saying doesn't match how he feels.

It's kind of the same if someone came up to you right now and said you needed to sign those forms...you might get very angry and refuse, because YOU know YOU are FINE, right? I know I'd definitely be angry! So trying to "prove" to him that he's not okay doesn't really work, because now his brain is lying to him, and he doesn't know that and won't be able to understand it.

So now that we know it's probably not denial, how can you best engage him? Join him in his reality and avoid the power struggles that come when you try to have him see things from your reality.

I'd encourage you to try more diffusing strategies. For example, don't single him out, don't make it about his memory loss or because he has a problem. Maybe as a family sit down and all talk about who you would each want to take care of you or make decisions for you if you couldn't do it yourself. Even consider that you would all fill out the forms (which incidentally, it would be great if you all had those in place long before you ever needed them anyway), so it's not just him. That this is something you're doing as a family because it's a wise choice or a trusted lawyer or friend recommended it, or because you can get a deal on the paperwork if you all do it together, or whatever white lie would not incite a power struggle in him.

In helping him in day-to-day living, the same principles apply.

Figure out the source of the power struggle - for example, he thinks he's fine, or he resents being told by others to do things that a grown man should take care of himself.
Validate his feelings - "I know it's frustrating to have someone help you when you want to do this for yourself."
Avoid using language like "you have/need to" or "I want you to."
Put him in control as often as possible, include him in decisions whenever you can, even ask him for advice.
Use language that makes him feel in control "You asked me to..." or that puts people in control that he's okay with "The doctor called and said to..."