Communication & Dementia

It can be so very difficult to communicate with someone whose brain has gone a little haywire. This lovely short film reminds us how desperately patients with memory loss may still want to communicate, and how hard it can be to help, requiring all of our patience and not a little creativity.

Dementia is like a prison. I think of it that way a lot. As the mind is going the patient knows things aren't right. They're not sure why or what they have lost but they are sure they are gradually losing more and more control over their lives. And they're right. It's terrifying to be that vulnerable. I believe that terror that lies at the root of so many of the behavior problems we contend with in dementia patients. The outbursts. The oppositional behavior. The refusal to bathe. The anger. The name-calling. You can see the fear in their eyes. Meeting that fear with kindness and patience what I hope all of us, caregivers and health professionals alike, are working towards. It can be transformative.

In treating difficult behavior, I turn to medication only when I have to, either as a safety measure - at the extreme, it's sometimes safer for everyone involved when the patient is sedated; or as a palliative measure when there is delirium and intense confusion and frightening hallucinations. Under these circumstances I see sedation as palliative. Because no one should have to live as though in a nightmare. I'm not talking about sedation to the point of sleep, but giving medication as necessary to help achieve some blessed calm for the patient.

Luckily, there are some important non-pharmacologic measures that can help a patient with dementia or delirium feel safer, more relaxed, and more in control. Over time, I've learned many strategies that can help patients settle in the moment and sometimes in the long term, ones that don't rely on the use of sedating medication. How do we find out about these things? Well, I pick up a lot of tips from families and caregivers as I go on house calls.

Online, I often go to Bob DeMarco's website Alzheimer's Reading Room as a first stop. It's a treasure box of useful information, with tips for caregivers and health professionals on how to solve a great many problems. Once you're on the site, you just have to ask the right questions in the search bar. You'll be amazed by what you find. That was how I learned about Pete the Repeat Parrot.

In this touching article Bob DeMarco describes how his mother (also named Dotty as it happens) responds to Pete the Repeat Parrot: "A toy parrot is engaging my mother. Pete is raising Dotty's level of engagement. The best part is when she starts laughing. Laughing means good mood, laughing means higher level of cooperation. Higher level of cooperation means less stress. Less stress means greater happiness. It is like a beautiful daisy chain of events, feelings, and emotions." You can also see Pete in action in this video. Have a look!

Pete the Repeat Parrot is not at all obvious as a tool to use with patients with dementia. It's a children's toy that is designed to help with language development. It's not meant for the elderly and I would never have guessed the profound impact this little thing would have for some of my patients. But it's been quite astonishing and really heartwarming to see it in action. Talking to this stuffed parrot brings so much delight to folks who have trouble communicating but who still want to engage and be engaged. It doesn't work for everyone, but if you are caring for someone with moderate dementia it could be worth a try. If it works, it might give you a little time when the person you're caring for is entertained and at ease, time you can use to focus on other things, time to restore a little of your own sanity, allowing you to approach the next challenge of caregiving with more patience, and yes more creativity too.