Double D: A Strategy For Things You Encounter With Dementia

Like my premium talk about the two train tracks.

This talk is also inspired by talking to family carers here on InsideTimer and elsewhere.

I like to invite people to share small case descriptions.

Generic questions lead to generic answers.

Specific,

Personal questions make it possible to respond accordingly.

But of course,

It is helpful if there is a principle to share.

A solution that could be applied to most situations.

For a long time I've been advocating that no one-size-fits-all exists.

And I stand by that.

However,

Principles can be formulated that are adaptable to situations and people.

The 12 principles of Montessori-inspired lifestyle are an example of this.

They are tools of how to communicate with someone with dementia.

Giving choices and slowing down are instructions that can be applied to many an activity and can be adapted to each person.

Over time,

I slowly noticed that my answers to What do I do when?

Kept going back to one of two solutions or both.

And I have summarized these as Double D,

Meaning deep exploration and distraction.

I will briefly explain these terms and then illustrate how to apply them using some examples.

I think intuitively the terms make sense.

Deep exploration is an invitation to find out first and foremost why something is happening.

So you would dive deeper into a certain repeated question,

An hallucination,

The call for a certain person.

There are many scenarios where deep exploration is not the best option.

Even a simple I'm just too tired today is an indication to opt for the other option,

Distracting the person from what is going on.

As my mentor Cameron Kemp says,

When a person is engaged in an activity,

They cannot simultaneously be agitated.

In other words,

We look for a way to break the loop of something that is going on in the other person's brain.

Deep exploration dives deeper into a certain behavior,

Phrase,

Delusion.

Distraction steers away from it.

For every situation that you are thinking of,

You can use both.

If deep exploration agitates the person more,

You can switch to distraction.

If distraction does not work and the person keeps revisiting the issue,

It may be inevitable to do the exploration first.

As always,

I would like to highlight that if you are doing this,

Especially you live with a loved one,

To make sure to work within your boundaries.

It is important that you do not force and overstretch yourself.

Let's talk through some commonly shared situations.

Firstly the case where a person keeps asking the same question.

Let's say the question is,

When are we having lunch?

You might think that deep exploration is irrelevant.

Obviously the person is hungry and or forgot they had lunch.

I still invite you to ask the person why they keep repeating the question.

They may surprise you with a coherent reply such as,

I am afraid I missed lunch like I did last week.

I would like to know the time.

I am making sure that lunch will be served.

For example when a person had a time in their lives when food was scarce and meals were being missed.

Things that are less often expressed but could underlie the questions are needs for activity,

It can be plain boredom to try and engage someone in conversations,

Feelings of anxiety or the need to keep someone close.

Maria Montessori herself observed that repeated questions often were an indication that the person wanted to keep another one close.

Finding out what is going on is important for the solution that you may come up with.

For those who would like the time or with concerns if and when lunch is served,

It would help to put up a large clock on the wall.

Next to the clock could be a whiteboard which could say lunch is ready at 12.

For someone who has a need for meaningful activity,

You switch to distraction mode.

Engage the person in something they like and you will notice that they likely stop asking when lunch is happening.

You may even have to tell them that lunch is on the table if they really got into it.

For those who feel anxious or just want you close,

You can consider the lunch question as an invitation to sit down with them for a moment.

And again if you move from there into distraction,

You can create something to do for the person.

You may just only need to get them started and they will take it from there.

If your question,

Why are you doing this,

Has not been answered,

You could work this as a trial and error.

Another repeated topic that is more painful is that a person may bring up a loved one that has died.

Unfortunately people may forget that the person has passed away and ask you on a daily basis.

If the deceased was close to you,

It is potentially painful for both of you.

Again,

This may look as a situation where deep exploration is not necessary.

The situation is evident.

The person forgot that someone died.

They were used to having them around,

So they ask where they are.

True,

Yet at the same time more can be going on.

Cameron Camp described a case where a man kept asking about his deceased wife.

Although he did not appear to grieve whenever he asked about her and heard she had passed away,

He did appear to be deeply distressed.

Dr.

Camp sat down with him and found out that the man had concerns that he had had a hand in the death of his wife.

He just couldn't retrieve the details from his memory.

Suddenly his distress and the repeated question made a whole lot more sense.

Of course,

Most often we have an idea of the cause of the behaviour.

But it never hurts to ask,

Even just to confirm what we already suspected.

Let's go back to the case of a person who has forgotten that a loved one has died and asks you about this on a daily basis.

Whenever you share that the person has passed away,

The other becomes very sad.

We may want to shy away from the conversation,

Yet it may be worthwhile to explore this in more detail.

Talking about it may release memories.

You can try to come up with a solution to remember and honour the person.

A poster or a photo collage on the wall with birth date and day of passing in clear sight.

A small shrine with either religious symbols or personal items of the deceased.

A memory box with such items.

A memory book.

All of these can be made together.

Maybe if this person is given a place in the life of your loved one,

The information of the loss will not easily be forgotten.

Additionally,

The person can learn,

For example through spaced retrieval,

That if they think about their loved one,

They can look at the memory book.

It would be best if the date of birth and death are already on the title page,

So it will not come as a shock at the end of the book.

It may still be a shock to see it on the title page,

But this provides the person with a choice to open the book or put it aside for now.

It is not unlikely that the person,

Or you,

Sometimes,

Or every time,

Gets really upset.

The news is the news,

The grief is real every time.

These moments call for distraction.

The aim is to steer the person away from thinking about the deceased.

Again,

This means presenting them with something they cannot refuse.

A final topic that often pops up during my lives are hallucinations and delusions.

Hallucinations are sensory inputs that others do not sense,

Like seeing people or hearing voices.

Delusions are ideas that are out of touch with reality.

For example,

Someone misplaces their wallet and thinks somebody has stolen it.

Let's take that as a first example.

Usually,

This is hard to miss because the person will tell you in clear terms that they think you have stolen their wallet.

What an accusation!

Yet it is up to you to breathe in and out and not take this personally.

No need to dive deeper into this one.

To take the source of the stress away,

The wallet needs to be found.

It will be best to do this together.

First of all,

The person may be prompted by things in the environment about where the wallet might be.

Secondly,

If you do it alone and then return the wallet,

It can still be a point of discussion that you actually took it before.

So search and together it is.

Once the wallet has been located,

The next step is to prevent this from happening again.

Together you choose the best and safest location in the house where the wallet should be at all times,

Unless taken out.

You could make a shelf with outlines of keys,

A wallet,

Hearing aids and glasses,

Adding labels for what goes where.

Again,

Do this together so the person can direct you in what helps them.

If this shelf is within eyesight of the main door,

Or the door of the living room if that feels safer,

The shelves,

The outlines and labels will trigger the person to put the items where they belong.

Let's continue with hallucinations,

Often deeply distressing for you or the other.

I always recommend deep exploration first to find out what is going on.

For example,

If the person mentions they see someone standing in a room that is not there,

You could ask,

Do you know who it is?

How does this person make you feel?

What is the person doing?

People with war and other traumatic memories may have hallucinations that go back to that time.

It could be really useful to know this.

Even talking to you or a friend about these memories could bring some relief.

Again,

Making a memory book could be helpful.

Art based on the memories.

There are plenty of ways to get the memory at least partly out of their system and into the open.

Finding a support group or knowing a friend who was there with them may present a helpful familiarity.

If things get too intense,

Too repetitive or distressing,

Or for example you know it is not related to something in their past,

Signals it is time to look at ways of distracting them from the hallucination.

Again,

It is the hope that if a person becomes engaged with something else,

It will steer away their attention from what they sense.

It may not always work.

I remember a daughter sharing that she ended up joining her father in a hallucination where they were out at sea with a risk of drowning together.

It was intense,

But doing it together seemed to shorten the duration of the hallucination.

As you hear in this talk,

There are many options and many solutions.

What works for me may not work for you.

What works today may not work tomorrow.

I realize that I have not spoken much about how to distract someone when they need it.

The reason behind this is that it will be something different for every person.

I can only advise you to make a list,

Possibly together with the person themselves or other family members,

Of things the person used to like.

The next step is to think about varieties of each activity,

Especially how to simplify them for example by working with smaller steps.

If someone used to love fishing but is no longer able to go out for a fishing trip,

They may still be happy to join someone else sitting side by side with snacks and coffee,

Enjoy a trip to the fish market,

Choose a recipe and help cook a dish,

Look at their fishing rod,

Taking it apart,

Cleaning it and putting it back together.

If someone used to be a meticulous housekeeper,

They may very much enjoy helping you out around the house.

Folding towels,

Separating laundry by colors,

Washing vegetables and fruits,

Putting groceries away,

Setting the table,

Helping to make the beds,

Take the bedsheets for laundry.

You can do this together or provide written stepwise instructions if that helps.

If someone used to make art,

It may still be worthwhile to see if you can prepare their workspace together,

Laying out different paints,

Brushes and canvases.

Maybe this inspires them to start painting.

Maybe it results in talking about the process.

Maybe in looking at previously made artworks.

You could together select artworks to put on one of the available online shops that lets people sell their art.

Maybe you would like to go to a museum together.

Some now offer tours especially for people with dementia.

I hope this inspires you to start thinking about what you can do.

I think an important conclusion to share is that when talking is not an option,

For whatever reason,

There's always doing and always just being.

Thank you for listening to this talk.

Please feel free to share suggestions and requests.

I'm happy to help where I can.