Dementia

Learning to support and be with a PERSON Living with Dementia

1. Introduction

Dementia is a disability not a natural part of getting older.  It is true that many of the people living with this are elderly, but that is not true across the board.  It can hit at any age.  It is vital that we see it as a disability as this importantly impacts on how we reach out, perceive and cope with this the person living with dementia.  As such, we can all learn to help that person to manage their condition and retain their abilities for far longer.  It can help with them retaining their self respect, individuality, and sense of self.

People living with dementia cannot reach out to our reality, our world.  We cannot expect them to do that, they have lost the ability to learn new things, to be “oriented to time and place”.  That last phrase is a favourite line used by nurses and isn’t accurate at all.   A person living with dementia needs us to use insight, interpretation, great warmth, and genuine emotions in order for them to be fully supported.

In usual communication, we meet half way with the other person, but for people living with dementia, we need to go much further.

Me———————————-ll—————————————You

Me—————————————————————-ll———Person with dementia

People living with dementia are ‘us’ , all of us.  They are not ‘them”.  Sounds obvious, but how often do we talk about this highly vulnerable group as ‘they’ or ‘them’.  You will note, I hope, that throughout I try to use language in a non judgemental, non labelling way.  This may seem trivial, but it is not.  How we describe a person is how we think of them.  It may seem a mouthful to say, ‘People living with dementia’ and be tempting to take a short cut and say, ‘demented person’.  But a person is not demented.  The person must come first in all descriptions.  It is important because we all, so often, only see the disability and what the person cannot do, not what they can do.  This again can drive our interactions with people.

Dementia is an ’emotion’ driven disability, not a ‘thinking’ driven one.  But we spend so long trying to use words to communicate, and logic, we forget how to use other means of communication.  In fact, we use other means all day every day,  but we don’t concentrate on them.  We have to start to working from the premise that all actions, sounds and movements in people living with dementia, are meaningful.  Just because at times we cannot understand those meanings, doesn’t mean they don’t have meaning.  This is a very important idea to grasp.

OK, lets do a little game.  Now do it honestly and don’t cheat!!  Please actually do this and don’t just read it and move on.  Insights come from doing, not being passive.  I learnt this game when doing a course in dementia care

I want you to take a sheet of paper and a pen.  Draw a large circle on one side and another on the other side.

Now, from memory alone, I want you to draw a penny, each side of it on the different sides of the paper.  I want all the symbols, pictures and writing on it.  Give yourself 5 minutes maximum to do it.  [You can check later how well you did].

Stop reading here and do this first.

Once the time limit is up, I want you to answer some questions.

What did you feel when I asked you to do this?
What was the first thing you tried to do?
What did you feel as you went through the exercise?

What did you learn from this?
How do you think this exercise might be related to a person living with dementia?
Looking at your reactions, how many of those do you feel a person living with dementia might have?
Thinking about how hard you found it to remember something so simple that you use everyday, how do you think a person living with dementia feels when they forget something so simple we all use everyday?

When you see someone living with dementia struggling, what thoughts now might go through your mind?
How might you be able to alleviate these feelings of frustration and hurt?

Now suppose there was very loud music in the room and people were all talking loudly with each other too.  Do you think that might have impacted on your concentration?  Maybe not for some clever souls, but I think a lot of us might be distracted.

Suppose I had bombarded you with questions all the time, some of them to do with the exercise, but others talking about random subjects.  Maybe I could have asked you if the blue shirt you were wearing was your favourite colour, and what you wanted for tea? etc.  Perhaps my mobile could have gone off and I started to answer it whilst next to you? If I was with you, perhaps, although I had said 5 minutes, after 2 minutes I had said that your time was up because I was busy.

You get the picture I think.  The task was hard enough on its own, but how on earth could you even begin to concentrate with all the others things going on.  So you see its not that hard to begin to get a tiny glimpse into the world of someone living with dementia.  Be honest, would you have been tempted to get angry with me, or tried to move away, or to give up?

People living with dementia live with this all day, every day.  We need these types of insights to be able to reach out to them effectively.

To help you draw a few more conclusion from this I will add a little more here.

I want us all to realise something important.  In dealing with people living with dementia, ALL MOTION IS EMOTION.  How many of us have habits when we are annoyed or in a hurry, or trying to concentrate that have nothing to do with spoken language?  Maybe you tap your fingers, fiddle with your hair, pace up and down, sigh, bite your lip, fidget, rub your hands together, look impatiently at another person etc.  (You can add your own in here, or better still, ask your family or friends, its amazing how many things we do and aren’t aware of).

People living with dementia do the same.  When you are with this person, what might you have seen that might be communication now you come to think of it?  One way you could try to enter into a communication with this person is to note they are, for instance, tapping their hand on a table, so you tap gently with them, and when they stop, you stop.  Ensure you get eye contact, smile, and state what emotion you perceive, eg “you look angry” or “you look happy”, provided you are fairly sure you are right.

Remembering how difficult this was for you to remember what the coin looked like, think again about being bombarded with questions.  Its a good general rule to try to minimise questions you use.  People living with dementia find constant questions very difficult.  Everything in their world is confused and stressful already, and they are trying hard to answer questions already, like “where is the toilet?” so don’t add to this.  I personally find this difficult as its a norm in our society to show interest by asking questions, “How are you today?”, “Did you get the car fixed yesterday?” etc.  It takes a lot of practise, and I will admit freely, I never quite mastered it myself.

Remember the distractions I mentioned?  Wherever possible, try hard to minimise distractions.  Turn off the TV, unless they are meaningfully watching it, turn the music down, shut the door on loud noises.

Give people time to work things out, if they can.  When I said I was going to cut your time short, how might that have made you feel?  So do one thing at a time, only a few words (5-6) in a sentence, and act as their memory.  So repeating back to them the words they have just used, pause a little, then use your words – but no more than a few at a time.

I will go into this and more, later on.  This is just a very brief introduction into the world of a person living with dementia.

2. The Science Bit

The brain and where some of the problems come from.

I fully admit that I have taken all this from my notes of when I was taught this.  I am no expert on the brain, so needed help here.  If you are fine with biological words, the that is good.  But for others (including me, despite being a nurse!), I would say, don’t get hung up on the names of the brain parts,  just understand how different parts make the brain are faulty in people living with dementia and how that impacts on their behaviour and abilities.

There are many types of dementia and the list below is far from comprehensive.

Alzheimer’s disease
Vascular and multi infarct dementia
Lewey-body dementia
Frontal-temporal lobe dementia
Pick’s Disease
Alcohol related (also known as Korsakov’s) dementia
Parkinson’s Disease (in some cases)

NOTE:  ** There are states a person can enter which are not necessarily dementia, but can mimic it.  A general rule is that if someone “suddenly” appears to have dementia, over a few weeks, then a lot more tests need to be done.  In elderly people, the kidneys, liver and thyroid often don’t work that well on a good day.  So any change can have dramatic effects on their behaviour.  Also medicine interactions can cause a lot of problems as one GP after another puts them on more medications.  Chronic depression and sleep deprivation, and chronic loneliness can also create behaviour changes.  Please look at my article on the web page called, Psychosis and the Elderly.  Diagnosis can only be given by a professional in this field.**

The Brain

There are two hemispheres  in the brain, the left and the right.  A right handed person has the dominant hemisphere in the left side of the brain.  A left handed person has the dominant hemisphere in the right side of the brain.  The other sides are called the non dominant side of the brain.

All functions cross over above the neck, so the right side of your body is controlled by your left hand side of the brain, and vice versa.  The dominant side controls most thinking, actions and behaviour.

The Temporal lobes control the memory centre.  Memory is separated into verbal and non verbal here.

The non dominant side contains visual memories, how to find your way, where things are.

Long term memory is stored deep within the brain, but short term memory is on the surface, so short term memory is often the first to go.  But as the dementia progresses eventually the long term memories will go.  Emotions are very, very deep, so they become the last thing affected by the dementia, if at all.

The Parietal lobe spreads across dominant and non dominant areas.  So the dominant area houses the analytical centre, things we structure in our minds.  Here is language, speech, reading, writing, arithmetic, handling money, etc  A person living with dementia can early on lose the names for things which is caused by damage to this area.

Less dominant parietal lobe houses the spacial awareness, the geography of places.  This is very important in us finding our way around and finding places – eg trying to find the toilet.  It is the area that teaches us where we are, where objects are and where we are in relation to areas of a room, for instance.

Both Parietal lobes’ damage can cause two things called agnosia and apraxia.

Agnosia is the inability to recognise things for what they are, the “knowing” function.  Family member’s faces, a knife and fork, a toilet.

Apraxia is the inability carry out purposeful movements, in other words, patterns of movement eg putting on an article of clothing in one movement, perhaps the person can put food on the fork, but not able to put the fork into the mouth.  NOTE:  Once this has gone, its is pointless to try to explain to the person how to do it, they won’t be able to remember.  But in the early stages, you can prompt them, by bridging a gap in their ability.  So gently taking the fork, and moving it to the mouth, they can manage to put it into their mouth, perhaps.  But prompting is different from reminding them.

Frontal lobes

Complex area.  Here is what is called, the Executive Centre
Management Centre
Adult Behaviour Centre

In here you have the planning and learning something new things, areas.  Also the ability to initiate action, thoughts etc.  Motivation is centred here, the bit which literally switches you on to attempt something.

In a person with dementia, you might find they appear disinterested, have no motivation.  Or they may get stuck and repeat over and over again the same behaviour, or repeating the same sentences, over and over.

This is our regulator, our control box.  Here you have socially appropriate behaviour, keeps us on track with what we are doing.

When lost, the person may constantly pace or “wander”.  Or they may become disinhibited, for example, taking off their clothes, making sexual comments or behaviour which is deemed inappropriate etc.

The three areas of the Frontal Lobe (The lateral, medial and orbital basal surface) together gives us insight into our behaviour.  In the person living with dementia they may in the early stages, realise their behaviour is not right, but cannot interpret/think/analyse what is wrong.

Limbic System

This connects all the areas of the brain together, for example, the behaviours with the memories, and adding in the emotion that goes with it.  It affects sleeping or eating for instance.  When damaged you can get limited connections here.  This can lead to anger, frustration and tears, but poor insight into why they feel that way.  Asking them over and over what is wrong, may not elicit any response or create more anger as they cannot explain.  Sometimes sudden anger can upset relatives and friends, but this person is in great distress and knowing why isn’t always going to be helpful.  If the person can say something to you, try to interpret what they may mean from their responses, but don’t hold onto needing an answer.  Try not to take the anger personally, it often isn’t personal.

Quite often I have seen relatives, with all the best intentions in the world, asking the person to explain what is upsetting them.  I used to do this myself before I was trained properly.  It comes from a sense of helplessness in the face of strong emotion. Knowing that rational understanding is not possible for people with dementia, may help to put the relatives minds at rest that they are not doing anything wrong quite often.  Its down to us non disabled people to try to work it out, not the person living with dementia to work out.

Once again to state this:  it is impossible and pointless to try to make these damaged parts to work again!

This is a very simple over view of the brain.  But it gives us an insight into why some things go wrong and the behaviour which therefore accompanies the damage caused.  One thing which commonly causes great distress in relatives is when a person starts to swear and yet never did this in their lives.  But I hope they can now understand some of the reasons why this might happen.

3. Stages of Dementia

Don’t feel you have to get hung up on the stages, but for some, it might be helpful to have insight into this.  Again, this is highly simplified and we must all be willing to adapt to the person changing and them retaining some abilities intact but others gone forever.  No-one expects us to remember all this when with the person, but insight can give some support in aiding the person with dementia to cope better with their lives.  This in turn can make the person living or visiting with them feel better about how they feel in the face of all these behaviours occurring and how to alleviate the distress and suffering of people living with dementia.

Before we go through them, remember, all communication is meaningful.  Accept the person as they are and value who they are now, not who they were before.  Focus on their strengths, and personal qualities and experiences.  Everyone of us needs to feel self respect, valued and understood.  In Dementia, past and present blend together.  This person lives in the now, by which I mean, they may respond to distant memories, but their experience of them is in the present.  Emotions are the key in all areas of their lives.   Emotions don’t get dementia.

It is all about helping them make sense of their world, not our world.  If a person suddenly gets upset that their mother has died, even though they may be 85 themselves,  they are genuinely distressed  by this.  Reminding them that the person died 30 years ago is of no use to the person living with dementia and is pointless.  It is hard for us non disabled people to live in the ‘now’ when we are planning, thinking and living our lives.  But it is a skill that needs to be learnt.

So, EARLY STAGE

A person here may be aware of the aspects of their ability they are losing and will do a lot to try to appear they are ‘normal’.  A lot of fear can occur here, and they can be truly terrified that they are losing their mind.  There may be a great fear of losing independence and often they will make up stories which are not true, to hide their confusion.

When still at home, the familiar surroundings will create a great safety net, and help to keep their abilities intact for a while, as will a familiar routine.  Living with a relative who does not have this disability may also help to mask their loss of short term memory, as the relative may take on more and more roles in the house.  It is easy to not notice that there is anything wrong at this stage or put it down to just being a ‘bit scatty’.

However, the person may be easily angered at anything which they cannot understand and blame others for what is happening.  Quite often there will be accusations of ‘someone’ stealing things or moving things in the house.  There may also be a paranoia, justifiable in my opinion, that people are trying to confuse them or take them away.  A relative of mine would make endless lists and then not remember to carry them out.  On finding a list, he would show it to me as proof that he was normal.

At this time use everyday language to explain things, but do it casually, so as not to appear patronising.  Use positive words – this is a hard skill.  You have to rethink your way of speaking.  So, for example, the person having made a a meal, but not put it into the oven, should be responded to perhaps with, “That is a lovely meal, let’s put it in the oven a little longer, shall we. You know me, I like things well cooked”

Use less logic and reasoning, for instance, don’t state things like “We’re going to the butcher’s then the corner shop so we don’t double back on ourselves” – this is far too complicated.  A simple, “Got your coat mum, its cold, we’re going out now” will suffice.  Ask few questions, make simple statements.  Try not to use any abstract words.

SECOND STAGE

The person may become more visibly disoriented, less inhibited, lose their sense of time, not use the socially accepted ways to behave, but no longer so uncomfortable with their  disability.  At this stage there may be less of the paranoia and less fear of the type noted earlier.  Sometimes the person may be more likely to have hallucinations or misread events or people around them.  Something happening in the periphery of vision might be interpreted as a person, or an object that we can’t see or make out.

When a person is displaying this level of ability, validate their reality.  That is not the same as agreeing with the hallucinations or patronising them by agreeing with a lie.  But look for the emotion behind statements or visions.  A “dangerous man in the corridor” could be validated with, “it is dark in there, I’ll put the light on and go in first.  I can see you are frightened mum”.

But remember words are not the essence here as meanings verbally are already breaking down.  So approaching the person in their line of vision, so they can see you approaching, sitting next to them, gaining eye contact, and smiling warmly, may be all they need.  Holding their hands, and if appropriate, stroking their arms etc may help.  Use very basic communication, keep sentences very short and give the person time to try to make sense of it.  Patience is essential.  Do things slowly and clearly around the person, so they can follow you and not feel rushed or threatened.

A hard one for many relatives is that you can’t assume they know you.  If you approach and the person is afraid or looks puzzled, you may smile and introduce yourself to prompt them.  That might be all they need.  Another common theme here is they think your are their sister or brother or their mother etc.  This really doesn’t matter.  Just talk normally and show lots of warmth and kindness.  The most important thing to remember is not that you have “lost your mum/dad” but that your mum/dad is trying to understand and is still there, but changed.

THIRD STAGE

This is commonly characterised by what is called “word salad” but I don’t like that phrase personally.  The person may make frequent movements or words and sounds repeated.  Again, listen carefully to what they are communicating and respond.  I will go over later the common phrases used by people living with dementia.

You may find that they have trouble keeping eye contact or seem to not be able to see as much.  At this stage the person may not walk or move around nearly as much as before.  It is a hard skill to learn here, but interpreting what they are communicating is important.  Observe closely the movements they do make, and the expressions and emotions the person may be showing.  You need to interact fairly intensely but don’t drain the person with long episodes of interactions.

People want to belong and have meaning.  Some places I have worked think cuddly toys or dolls are ‘infantilising’ the person.  The man behind my training, a truly great man in my opinion, taught me that this was not true.  If the person believes their children are still babies, a doll for them to nurture can be really helpful and meaningful to them.  I had a man who always kept border collies, so we found a really good toy, quite large one actually, which we gave him each day.  Obviously he sometimes wasn’t interested, but fairly often he was and would talk to it, give it orders and laugh.

FOURTH STAGE

Verbal interactions may be gone almost entirely.  But that is not to say that occasional words aren’t spoken.  If  you can’t relate to what they are saying, again repeat back the word with smiles and warmth.  This can help the person feel heard.  They may appear switched off and have closed eyes.

But, that doesn’t mean you can’t reach out.  At the place I used to work, we had different cloths of with textures, aromatherapy scents, gentle music, bright visual images – simple ones, and use clear tastes of food or just ‘treats’.  Obviously, knowing the person and their tastes will help here.  But don’t be surprised if a person who has hated sugar all their lives, appears to love it now.  Intense observing of their faces will tell you if they like or don’t like something.

Don’t assume that “no-one is at home” with people at this stage.  In no way criticising anyone, it is common for relatives to be upset at not getting any response.  This is your problem, and perhaps you can remember to put the emphasis on the person living with dementia here.  After all, you can go to friends and family to express your upset, anger, depressed feelings about what is happening to the person, but whilst you are with them, make every second count.

Even if nothing seems to work, don’t forget that loving touch and gently spoken words in a deepened voice, can be reassuring and meaningful to the person living with dementia.

In my time whilst looking after people with this disability, I noticed that those who were visited regularly and had loving interactions, retained their abilities for longer, and after the relative had gone, they responded with more peaceful or smiling reactions.  So the person might not remember you had even been there two seconds after you left,  but the emotions did stay with them.   So many times I wanted to call the relative back and show them the reactions we were getting afterwards.

Validation

I have used this word before so thought an explanation might be helpful here.

Be still inside yourself.  Put your mind into a quiet mood.  Don’t rush in, all agitated because the bus was late and you have to do the shopping etc.

Sit with a warm smile, and gain eye contact if you can.  Using a gentle clearly spoken voice talk in the simple statements to the person.

Touch them, the hand, the shoulder, an arm around them.  When you talk, perhaps recall simple memories with them and if they respond, repeat back to them what they have said., not in a slavish parrot fashion, but perhaps in another way with the same meaning.  If a person can’t understand what you have said, phrase it another way.

Mirroring – this means that if they are waving an arm around, copy that.  The person living with dementia can often not be aware of themselves in the space they live in.  If you mirror, they can be more aware of what they are doing and often will look more intently into your eyes.  When I was first taught this, I thought it was silly, but you know what, it did work.

Name feelings with them.  So if a person is agitated and sounding tearful or depressed, state that you can see they are depressed or low.

You will be giving them them clues as to how to interact, feel and be more aware of their surroundings.  As you speak, add in demonstrations of what you mean.  So, “ Do you want a cup of tea?” might mean nothing to the person, but add in a drinking tea action, can give them a clue as to what you are saying.

Again I remind you, you have to enter their world, they cannot enter yours.  Don’t forget to get the person out in the sunlight.  All too often we keep the person cooped up inside and don’t even realise we are doing this.  Sunlight can have dramatic effects on a person’s mood.

Always talk and treat the person as an adult.  A common misconception is that its a “second childhood” and people interact accordingly.  This may sound obvious to some people, but all too often I saw the person talked over and then talked to as a child.  Talking over the person is a common problem here and for the person apparently sitting passively, they can be confused about who you are speaking to.  They can still hear you though and easily feel alienated.  They are always an adult.

Six of the Commonest Words Used by a Person Living With Dementia

These are;

Mum
Dad
Schools
Home
Work
Children

The essence here is to focus on the interpretation behind the words.  What feeling is the person communicating.  For example and these are only examples, you will need to fill in the gaps through your knowledge of the person.  For instance, a person who was sexually abused as a child may well not find the word father, a nurturing one.  But commonly he is a protector and nurturer.

But perhaps they are trying to say they need some of the statements here:

To feel safe and secure
Looking for purpose in life
Looking for protection
To feel loved
To feel a sense of belonging

So ask yourself questions.  If someone is calling for their mother, are they telling you they are frightened and lost?  Are they telling you that they are feeling alone and needing reassurance.  If they call out for her, you could say, “Your mother sounds like a lovely lady doesn’t she”.  Work on making them feel safer and more secure.

If they are wanting to go to work, what can you do to help them feel useful?  We all need to feel useful, so according to their ability, can you find something they can do.  We had a lady who used to work in a laundry, so we gave her towels to fold up and put in piles.  Obviously, you can’t repeat the same thing over and over necessarily, but use your imagination.

So this a a general overview of Dementia and how you may be able to approach helping and supporting the person you know who is living with dementia.  It is by no means comprehensive.  I would say that for all I know some things about how to relate to a person with dementia, I am not an expert, I only wish I were.

The person whose work trained me most was a man called David Sheard.  Some of the material here has been taken from his work.  I would strongly urge people to look up his work on the internet and read his books.  He developed a truly brilliant approach to people living with dementia and took dementia care to the next level.

The Alzheimer’s Society also has many very useful publications which you could try.

Neither I, or anyone else, can answer everything you need to know about dementia, but I hope you will be able to start the process of interacting with the person living with dementia better through this guide.

Please feel free to discuss any issue you have living with dementia, or supporting someone with dementia in our Dementia Forum.