Dementia Through the Eyes of Someone Who Has It

It was really just a case of being in the right place at the right time.

Those of you who read last week's blog about Lakeview Ranch in Minneasota know that I spent an enjoyable afternoon sitting on the lawn during and after the pet therapy session with a group of lovely people who just happened to have dementia.

For a time I was sitting with a lady whom I'll call "Jen." Jen has what I would term moderate dementia. She is not as mobile or "present" as someone in the earlier stages, but we conversed about family and her farm and it could have been her farm in the 1950s or it could have been now, but you know, it really didn't matter.

Every so often Jen looked up and turned her head to gaze at the other residents seated around the lawn. The sun was shining, cars drifted silently down the distant highway, trees swayed in the breeze. And Jen said "It's like it's all a dream..."

You know I just feel so fortunate to be able to be present for these sound bites, kinda like the "WOO HOO" experience from a few weeks ago. They provide me with so much insight into the world in which a person with moderate to advanced dementia must operate. Is having dementia like being in a dream? Not for the person in the earlier stages of the disease. But for a person in the later stages? Perhaps it's worth considering as a way of understanding what it is like to have dementia in the later stages.

Have you ever had a dream that, when you wake up, you think it was real? I know I have, and it's very disconcerting. The colours, the people, the things I see, the places I go. I actually wake up missing people, even if I've never met them!

But while I'm having that dream, as real as it is, and as much as I am a participant in the dream, I'm on the outside. I'm really only an observer, even if one of the people I am observing is me. I have no control over the me in the dream. I can't control where I go, what I am doing, who is with me. I can't tell the Dream Me to move my hand or walk down a road. And the dream is all a little hazy, and events happen so quickly and many times, have no logical sequence. I can be in London one minute and then Toronto the next. My father can be in the dream even though he has been dead for over 20 years. I can be having a conversation with him. A friend whom I haven't talked to in years might play an active role, and we might be talking about something that just happened yesterday (in dream time). In fact, in a dream, time has no meaning or relevance. There is no rhyme or reason as to why the people who are in the dream are in it, and no cause for what is happening and no hint of what might happen. It's all a dream...

So I wonder if a person with moderate to advanced dementia passes back and forth between the present and something that can be best described as a dream state?

Bob DeMarco, author of the Alzheimer's Reading Room, posted a most excellent blog today, entitled "Alzheimer's Caregiver Lament -- This is Not the Person I Knew." This article is a must-read for those of you who are interested in what a person with Alzheimer's must be dealing with. In it Bob says that the person with Alzheimer's is the same person you always knew, but is now a person with a disease, and this disease is called Alzheimer's. He talks about the "cognitive dissonance" in the mind of a person with dementia and the effect that the dissonance has on the person's personality as they attempt to deal with the frustration and confusion it can cause.

A person with moderate to advanced dementia is a person who is struggling more and more to stay present, and in many cases, has lost the battle. Once we understand what it is like for the person with dementia to operate in the world and what lense they see the world through, we can start to make real progress in working with them to live their best life.

In writing this blog, I just had an "A HA" moment. I have been using the words "stay present" and "staying in the present" interchangably. But they are actually very different.

While it's important to a person with mild memory issues that we assist them with any means possible to operate IN the present, there is little value to helping a person with moderate to advanced dementia stay IN the present. We who have been care partners to someone with moderate to advanced dementia know the frustration caused for all involved when we take the path of constant correction (No Mom, Dad passed away last year!), and really, it's just a non-starter. There comes a point where one must ask one's self, "Is it more important to ME that my loved one stays in the present, or more important to him/her?"

However, there is immense value in helping a person with moderate to advanced dementia stay present. Staying present in the moment means that the person with moderate to advanced dementia is available for interaction with another person right here and right now. It means that only this moment matters, not what happened 10 years ago, and not what is going to happen in 15 minutes. Whether the person with dementia is in a dream that places them in the 1940s with people who no longer exist is irrelevant. To us, as care partners, it means setting aside who that person WAS and working with the person as they are, no matter what dream they might be in at the moment. It means acceptance.

I don't have the answer to the question of what one must do to help someone stay present. My own personal tact is to recognize that the person is the same person he or she always was (unless it's a person I've just met!) and to treat them with the love and respect due to them. I will "step into their reality" (who really cares what year it is) and thinking as their reality as something akin to a dreamstate helps me to understand what their reality might look like, at least part of the time.

I like activities that play up the person's skills, as skills are not time-based and playing upon those skills can add to a person's self-worth. I also beleive a person should never stop learning. I like activities that allow the person to contribute to the community, and that provide opportunities to interact with people rather than things (particularly one-on-one interaction), as interaction with a live being demands response, which helps us to stay present.

This of course means that activities must be active, and not passive. Examples of such activities are:

• One-on-one reading (I had to say that!)
• Pet therapy, but actively caring for the pet, not just petting it
• Vegetable gardening, where the gardeners are involved in the harvest and the community reaps the reward of fresh produce
• Helping to prepare a meal, cleaning house, arranging furniture...things you would do around a house
• Singing or playing music as part of a group
• Helping in a preschool (how about onsite preschools and intergenerational learning?)
• Laughter yoga, the only exercise class I have seen that demands in-your-face interaction that actively engages participants and literally brings them alive
• One-on-one sessions with flash cards, games and puzzles that also require interaction and participation.

Of course, participation in such activities depends on each person's abilities, likes, dislikes and how their cognitive dissonance might manifest itself. For example, a person with moderate dementia who doesn't like children and lets everyone know it, might not do well with preschoolers, but you get the picture.

If it's like a dream, at least let's make it a good one!