Understanding Alzheimer’s disease

Over 45 million people worldwide live with some form of Alzheimer’s disease or dementia. An innovative program at the University of Texas Health School of Nursing in Houston, Texas, enables caregivers to experience the symptoms of dementia themselves.

TRANSCRIPT

More than 45 million people worldwide live with some form of Alzheimer's disease or dementia.

An innovative program at the University of Texas Health School of Nursing in Houston, Texas, enables caregivers to experience the symptoms of dementia themselves.

Here's a look.

UT Health has established the Glenn Biggs Institute for Alzheimer's and Neurodegenerative Diseases, and the vision of that institute is to provide comprehensive care for patients with some form of dementia, most commonly Alzheimer's disease, and their family caregivers, and we know that family caregivers are the most important resource for people with Alzheimer's disease and are really their lifeline to the world outside of themselves, and so as part of providing this comprehensive program for people, the School of Nursing has established the Caring for the Caregivers Center.

An innovative part of the Caring for the Caregivers workshop is called the Virtual Dementia Tour, which simulates how it feels to be stricken with the condition.

The Virtual Dementia Tour is an important part of this workshop.

It seems quite simple.

The whole concept of it seems very simple.

We put some headphones on someone, which really tries to simulate what it's like to not really feel in touch with the world outside of you, not to understand what people are saying to you.

We put goggles on, which simulate what happens as the dementia progresses and people lose their peripheral vision.

We have things on their hands so they don't have the fine movement, and then we have things on their feet, which many older people get peripheral neuropathies, and that simulates that, so it really tricks the brain into living in the world as someone with dementia.

The Virtual Dementia Tour is a way in which we can simulate the situation that a person really experiences, and so, for example, a caregiver can go through, perhaps, the first time that they understand what Daddy is going through.

Never before have they really felt it.

They've watched it, seen it, but in the tour, you can really experience somewhat what a person is going through.

After the Virtual Dementia Tour, caregivers share their experience through a debriefing that can be quite emotional.

Now that my dad is at the end, has this condition, I think, towards the end already...

Uh-huh.

...so I'm, you know, experiencing what he's experiencing...

Mm-hmm.

...and it's sad.

Mm-hmm.

Mm-hmm.

It's sad.

Mm-hmm.

You had no idea that it was... Uh-huh.

I do because I teach a lot of this stuff, and I, you know, work with it but not at this level...

Mm-hmm.

Mm-hmm.

...of intensity.

Mm-hmm.

So...

That's pretty profound that academically you know this...

Exactly.

...and really, in terms of researching it, you know this, but how he feels...

Right.

...have no idea.

Right.

Exactly.

Have no idea.

Actually going through it, it really made me understand how someone, a family member, a patient, a client with dementia, what they have to go through, so it's just... You know, I can understand them now.

I understand, like, why it's so scary, you know, why they do get upset, why they get combative because they just don't know.

You know, they're kind of lost in their body, you know, so it's just a newfound appreciation, you know, and I think, for me, it's just...And I think that's why it's just so humbling.

Now it's my turn to experience the Virtual Dementia Tour.

First, I'm given five simple tasks to perform.

With my hearing impaired by the white noise in the headphones, the instructions are intentionally difficult to understand to further simulate the experience of a person with dementia.

All right.

I'm going to be giving you a set of instructions.

I will only be able to read it once, so try and follow as best as you can.

Okay?

Okay.

All right.

So belting lope.

Put coffee fridge.

Cloak past five eight.

Med two times three.

Cleaning tab-le.

Going in the room, and again the vision is impaired.

With the shoe inserts, it's not easy to walk, and just with the hearing loss and the white noise in my ear, it's hard to focus.

Because you're a bit confused and because your mobility is affected... and now I hear a siren.

[ Siren wailing ] And when you hear the siren, that kind of resets your train of thought as well.

The siren is confusing.

We associate sirens with danger.

But the more you go through this and the more disoriented you are, the more you completely forget what he told you.

There's just a state of confusion here, so I'm just kind of walking around to see if this might trigger or help me to remember what the sets of instructions were.

I'm stunned walking out of that experience.

I learned a lot, and I would just hope that, you know, more people go through this training, more people experience this.

I think the level of compassion and care and help...

Mm-hmm.

...for those who need it...

Mm-hmm.

...especially the elderly, would increase...

Mm-hmm.

...dramatically if more people could experience this.

Thank you.

Thank you for saying that.

It makes this really valuable to us.

Yeah, it is.

It was very valuable to me.

What we found is that caregivers who are better prepared to undertake the role are less likely to suffer negative consequences of the caregiving role and also are able to keep their loved one with dementia living at home longer as well and avoid institutionalization.

It is all about the patient, so what I would say in closing to anybody is listen.

It has the same letters as silent, so that means when you listen, you should be quiet, and so listening and hearing what they really are saying.

'I don't want that.

I don't like that.

Please do that.' Just stop and listen to what they have to say to you.

That's what I would give everyone -- listen.