10 Guidelines For Your Dementia Visit

Lena’s Alzheimers has taken a turn for the worse in the 2 years since her Sweden-based brother and sister-in-law were last able to visit. How could I help to make their visit stress-free and enjoyable? Here’s the set of practical dementia visit guidelines I came up with.

Dementia visit guidelines - mother and son
Mother and son - role reversal. 'Just like a baby'

(Note: This is not a universal ‘How-To’ for everyone with dementia. Everyone reacts in a different way. And there’s a huge variation between the capabilities of someone in the early stages and then in the late stages. But this is where Lena, with her advanced Alzheimers, is at now.)

1. Don’t forget she’s still here.

You know what it’s like when we all get together. We’ll have lots to talk about, and the conversation will be flowing. In the old days Lena was always right at the heart of it. But conversation doesn’t flow for her any more. She hears a mass of words and maybe recognises one and tries to repeat it – but it doesn’t come out properly. Nobody’s listening anyway. So in the end she gives up and withdraws, maybe stands up and leaves the room.

If you notice we’re all busy talking and Lena’s looking left out, that’s the time to bring the conversation back to her. Or hold her hand. Or just gently lead her out to a quieter place. Just let her know you remember that she’s still part of us.

2. Spend time alone with her.

Take a walk together, maybe to the shops. Take your time. Stop and show her things or point them out. Respond to what she points out to you, even if you can’t quite understand what’s got her attention.

Or go out to the kitchen and make something together – even if it’s just a coffee. Describe the actions as you do it, and she’ll repeat some of them. See if she wants to help – maybe stir something together. Then sit down and eat / drink together.

Or brush her hair. Or read her a bedtime story.

And in all of this, one thing is really important. Look at her. Establish eye contact and keep it. She understands facial expressions better than words. Try doing something silly, pull a few faces, and see how she laughs.

3. Keep the conversation going – improvise.

When we’re out walking especially, Lena never stops talking. She’ll find a word or sound she likes and repeats it four or five times. A lot of the time it doesn’t make any sense. But you can still respond. This is a typical conversation Lena and I might have. She starts:

– I thought it was blinky-blinky-blinky-blonk.

– What was blinky-blonk?

– I don’t know. It doesn’t matter.

– How many blinkies did you say it was?

– I don’t know.

– Three? Was it three blinkies?

– Yes. Thr …thr … tree.

– Three blinkies! On a Tuesday? That’s unusual.

– Exactly! Vad göra vi now?

– We’re going back home now. We’re almost home.

– Yes, almost hemma.

Utter nonsense, most of it. But it doesn’t matter. It’s a conversation, and Lena likes it because I’m engaging with her. I’ve learnt a lot from improvisation theory – improv. You’ve probably seen or listened to improv comedians on shows like ‘Whose Line Is it Anyway?’. Their golden rule is never to reject or contradict what the other person says, no matter how ridiculous or outrageous their words are. Instead, you say ‘Yes, and …’ – and then you continue building the conversation, wherever it takes you.

It might sound difficult, but it’s really not. Just remember that nothing Lena says is wrong or needs correction; don’t ever let her think she’s being reprimanded for trying to communicate in her own special way. Think ‘Yes, and …’ . And then say the first thing that comes into your head. 

4. Hold her hand when you’re out with her.

For three reasons. Because she enjoys the physical contact. Because occasionally these days she trips and stumbles. You’ll steady her. And because if you’re holding her hand, you won’t lose her.

If you’re out in a busy place, like a supermarket, Lena has an uncanny ability to get lost – in a heartbeat. You’re browsing the shelves, holding the basket in one hand and reaching out to pick out an item with the other. A group of people walk past and they’re like a magnet to Lena. Before you know it, she’s tagging along behind them. You turn round and she’s gone. So hold that hand as long as you can. And if you can’t, try to keep her in sight. Watch her like a hawk, checking every few seconds.

Don’t leave her anywhere and tell her to wait. If you ask her whether she will, she’ll assure you that she’ll be OK. And she means it. But then 15 seconds later, she’ll have forgotten your conversation, and she’ll be gone. That’s why it’s always good to have two people going out with her, so you can take the responsibility in turns.

5. Help – but don’t fuss.

You’ll notice her struggling from time to time. Nothing makes sense any more. At the table, why can’t she pick up this rice with her knife? Don’t comment. Just gently take the knife from her and put it out of reach, and put a fork or spoon into her hand instead. She’ll get it.

Or maybe you notice she’s stopped eating, apparently forgetting there’s still food on her plate. If you’re sitting next to her, just help. Fill the spoon or fork and pass it to her. If she doesn’t take it, feed her. If she still wants to eat, she’ll open her mouth and take it. If she doesn’t she’ll keep her mouth closed. Whichever it is, don’t make an issue of it.

In the mid stages of her illness, this was hard, and she resisted attempts to help, protesting ‘Do you think I’m a baby?’ But she’s past that now and quietly accepts that she needs help – as long as we don’t try to force her against her will.

Or maybe she needs the bathroom – you spot her holding herself. She hears the call of nature but doesn’t know what to do or where to go – and even if she did, how would she get those trousers down? First, don’t panic – she’s always well protected against accidents. Then, if I’m around, tell me: we’ve got our little routines and it’s easy for me. But if it’s just you there, there’s no need to be embarrassed; if you are, she will be too. It’s just as natural as changing a baby. Don’t ask her if she needs to go. Just take her by the hand, take her to the bathroom, help her with the trousers and the slip-on protective knickers, sit her down, and wait. Just like helping a baby, remember?

What if she’s caught short when you’re out and there’s no bathroom around? Well, like I said, she’s well protected. But look for an accessible toilet, where there’s more room and you can both go in together. Some of them have a special key – I have one you can take with you if you’re planning to go out together.

6. Anticipate the problems

Like a good Boy or Girl Scout, Be Prepared. So when we go out for the day, I take that toilet key and the spare knickers, and to be on the safe side, a spare pair of trousers. You’re just visiting, so you won’t need to worry about that. But if you are going out with Lena for an hour or so, you can guard against accidents by making sure she’s used the bathroom before you go.

Let’s go back to the food. Remember the rice and the knife? Well, Lena doesn’t need a knife anyway, because she can’t cut. So don’t put the knife in front of her. In fact don’t put anything near her on the table that’ll distract her from eating, or she will be distracted.

So if she can’t cut, then someone needs to do it for her. The shape and texture of food is important. It needs to be neatly parcelled, bite-sized, and easy to pick up. So, sorry my Swedish relatives, but we won’t be shelling prawns together on this visit. Anything with a skin or a peel needs to be unskinned or unpeeled – although Lena has been known to eat an entire banana – I mean entire! And just this evening, I’d halved an avocado in the kitchen, but when I came to serve it, I found a big bite taken out of one half … including the tough skin. It didn’t seem to do her any harm.

So there, you see, I made a mistake, by leaving the food unguarded, failing to anticipate. It’s not the first time – not by far. The other day we were in a restaurant and they served mints at the end of the meal. Wrapped mints. I unwrapped Lena’s and gave it to her, then carried on talking to the guy next to me. There was a sudden shout. It was the lady sitting across from us who had noticed Lena putting the mint wrapper in her mouth. It’s hard to anticipate everything. But we can all help each other to prevent accidents.

One last precaution we all need to take – it’s an important one. If you come into the house from the outside, make sure we’ve remembered to lock and bolt the door behind us. When there’s a group of us around and we all get busy talking to one another, Lena’s been known to slip away through an unlocked front door and off down the road, with no idea where she’s going or how to get back. She’s always been an adventurer and I want her to have as much freedom as possible – but not out there on the city streets without a mental map or compass or sense of danger.

7. Be patient

Everything takes a bit longer now. So, we’re going out. 

Where on earth is that missing shoe? 

Now, let’s put a jacket on: no, this arm goes into this sleeve. 

OK, we’re ready: Lena, where are you? Have you gone back upstairs? 

So, lets get into the car … this leg first – you don’t want to sit backwards, do you? 

Seat-belt. Where’s the other end? Are you sitting on it? Here it is. No – arm down!

It’s the easiest thing in the world to get flustered, especially if we’re running late. But have you read my story, The Day I Kidnapped My Wife? It’s all about the transfer of anxiety, like an electric current flowing between us. The more I increased the pressure on Lena, the more she resisted, until we had a little explosive crisis. But it was my fault not hers, for rushing her.

Her language skills may have declined, but Lena reads and reflects our moods and inflections perfectly. Try it. Make a happy face and she’ll smile. Make a sad face, and she’ll think something’s wrong – unless she knows you’re bluffing, and then she enjoys the joke. You’ll notice the same thing if she’s watching a comedy on TV. She may have no clear idea what’s going on, but if the audience laughs, you’ll hear her joining in with them.

So let’s give ourselves plenty of time, take it easy, and laugh together.

8. Don’t feel she’s giving you the cold shoulder

You’re in the middle of a conversation with Lena, when I walk past. She abruptly breaks off the conversation and follows me into the kitchen, leaving you there open-mouthed and stranded.  Don’t feel bad about it. It’s not you. It’s me. I’m her habit. When she sees me doing something, she’ll always come and stand behind me. Right behind me, you’ll notice.

But her allegiance can quickly change. When daughter Josie drops by for a quick chat after work and then leaves, Lena always tries to follow her out of the front door, shoes on or not, and I have to haul her back inside. You see, Josie’s the one who takes her out for for fun walks and shopping at the weekend.

So give it a couple of days until she gets used to you being around. Then you’ll become her new habit instead, I guarantee, replacing the boring old one. She’ll be following you around. Standing right behind you instead. 

9. Watch out for tiredness

You’ll hear the same from anyone who’s able to describe their own dementia. It is tiring. 

My entirely unscientific guess is that the parts of the brain that continue to work well have to work extra hard to compensate for the parts that don’t. Whatever it is, there’s no doubt that Lena tires quickly – no more late nights for her. By around 9 every evening she’s finished and ready for bed. And with the excitement and novelty of visitors around, it might be even earlier.

You’ll notice it when it happens. She loses concentration, stands up, sits down, seems on edge. The smiles fade. Ask her quietly if she’s ready for bed and she nods gratefully. Time for the bathroom and the teeth – ah, the teeth, that’s one of the hard bits, so best to leave the brushing to me – and then as quickly as possible into bed. Perhaps a little story – but she’s generally asleep in less than 5 minutes.

10. Reflect

When it’s just me and Lena together,  her bedtime’s the signal for me to sit down and start writing. What did I learn today? What do I want to remember? What could I have done better?

When you’re visiting, let’s sit and reflect together. What did you find surprising? Difficult? Memorable? Perhaps today’s experiences will trigger broader discussion. What does dementia show us about human communication? About appropriate and inappropriate behaviour. Almost certainly I’ll be picking your brains about the topic that’s top of my agenda: how to improve the wellbeing of those with dementia like Lena, those who are carers like me, and those who are the extended family or close friends like you. What do we even mean by wellbeing? How can we make a difference?

And then, when we’ve fixed the world’s problems, tell me stories. Let’s exchange memories. Because we’re lucky. We can. So let’s treasure them.

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We have an army of dementia carers all fighting their battles alone. That's no way to win a war.

Alan Miles

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