Dementia – How to deal with it

1.      Introduction

Dealing with people who have dementia is not easy.  I have written some notes explaining our experience in dealing with an elderly relative, which I hope other people may find helpful.  The notes are written purely from a personal point of view and just show what worked and didn’t work for us.

2.      What is Dementia?

Dementia is essentially a loss of memory.  Unfortunately what most people consider to be a loss of memory is only half the story.  Most people have occasions when they forget where they put their keys or forget the names of people.  Dementia is much more that.  Understanding what people with Dementia are going to forget and how their behaviour will change,  will go a long way to helping you deal with them in a way that is less stressful for both of you

3.      What are people with Dementia going to forget?

The short answer to this is – probably everything.  Not just facts and figures, names and faces but also things such as what a light switch is for or how to clean their teeth or to go to the toilet.  They forget what happened in the past and lose the ability to think about what will happen in the future.  They forget the meanings of words and the names for things, they start to mix up memories (which can sometimes be more confusing for the listeners than for the people with dementia).

Most important of all, they forget that they can’t remember.  It can be this aspect of dementia that relatives find most frustrating.  In most cases of forgetfulness, a reminder will usually trigger a recollection.  With dementia, there might sometimes be a recollection but not always.  Just imagine if someone said to you ‘Well, that was nice of Cousin Bob from American to visit us yesterday’.  Your reaction would be ‘Are you mad!  What Cousin Bob?  I don’t have a Cousin Bob!  I don’t know anyone in America!  Anyway, no-one visited us yesterday!’  For you, all of those statements would be true.  For someone with dementia, they also believe them to be true but unfortunately they are not.  They really do have a Cousin Bob who visited yesterday but there is complete disbelief that such a thing happened.

It doesn’t all start at once.  Normally it starts with the obvious things -  misplacing small items such as keys, forgetting names etc as mentioned above.  Some people are naturally disorganised and always losing things and sometimes the onset of dementia is harder to spot in such people.

Examples of what people start to forget:

a.       location of small items – keys, combs, glasses etc.

b.      people’s names –

c.       recent conversations and events (even as recent as 10 seconds ago!)

The forgetfulness then gradually becomes more serious and starts to include:

d.      forgetting the right place to put things – combs in the fridge, butter in the bathroom cupboard etc.

e.       forgetting the right place to look for things – looking in the fridge for a teaspoon etc

f.       forgetting the purpose of things – light switches, slippers, false teeth.

g.      forgetting that they ever had the things in the first place

h.      forgetting people that they ought to know

i.        not knowing where they are or why they are there.

j.        distortion of memories – two or three separate events or people get mixed up into a single one. 

An important point to remember is that people with dementia start to forget how to think logically and how to figure things out.  Again, this can difficult to see at first in people who are rather woolly minded to begin with!

Sods Law also dictates that people with dementia will from time to time, also suddenly remember things that you’d thought they had forgotten – usually the things that you’d hoped they would forget anyway!

4.      Changes in behaviour

This can be one of the most worrying aspects.  People who are normally mild-mannered and who have always behaved with old-fashioned politeness start to behave very out of character, becoming short tempered, aggressive, abusive or foul mouthed etc.

Some aspects of this (e.g. the short temper) may be caused in part by frustration at not always being able to make others understand what they are saying or what they want to do.  In a way this is similar to very young children who know what they want and think that they are saying words to explain it but not saying the words that their parents can understand.  For people with dementia, the meaning of words themselves get confused.  When people mix up names it is obvious and you can make adjustments.  When people with dementia mix up words it is sometimes not so obvious what they are trying to say or what they want to do.

I sometimes think also, that people with dementia are living in what seems to them, to be a dream-like state.  For some of them, particularly those who are very elderly and slow, things that they cannot always comprehend are happening around them or happening at a speed that they can no longer relate to.  One moment they are talking to a person, the next moment there is another person standing there.  In reality the first person has said goodbye and left and the second person has come in and said hello, but to an elderly person with dementia it is a blur of speeded up activity and a series of events that they have already half forgotten.

5.      The ‘Here and Now’

Another aspect of dementia is that people become much more focused on the ‘Here and Now’.  By this I mean that they are far less aware of recent events or people and they are also unable to plan ahead (they can ‘worry ahead’ but that’s not the same as planning).

If the sun is shining then ‘Summer is here’ (in the middle of January and not just a joke).  If they are hungry then ‘Nobody gave them any breakfast’ (very embarrassing when the lady from Social Services has come to visit).  If they are bored then ‘I never have anyone to speak to’ (they’ve been talking to someone all morning).

In Section 4, I mentioned the changes of behaviour.  Understanding the ‘Here and Now’ aspects can help you see that people with dementia are not necessarily being awkward but are merely expressing the feeling they have at the present time.  They don’t want to put a coat on because it’s warm.  The fact that you are going to take them out to the car and it’s freezing outside, takes a bit of time to get through!

6.      Emotional impact of new events

It seems that something that has a strong emotional impact on a person with dementia does tend to stick in their memory far more than routine activities.  Unfortunately this tends to be more about the impact of negative things than positive things but is important to know about.  An unfortunate stab of pain that occurred when visiting the dentist, lingers in the memory for months afterwards.  Showing Muriel a long lost photograph of her sister, prompted the question ‘Where is she?  I haven’t seen her for ages’  When we reminded her that her sister had died several years earlier, it was as if she was hearing about it for the first time.  The emotional impact did cause the memory to stick and many months later she still hasn’t forgotten it.  But if we’d known the upset that she would suffer in hearing the news of the death of her sister for a second time, we never would have said it.

7.      What works with people with dementia?

There is no simple answer to this, I can only say what worked for us (without any guarantee that it work for anyone else or will even continue to work for us in the future).

a.       Routine: Sticking to routines (for everything from getting up, washing, eating and dressing etc) helps.  Even if people forget, the fact that something is being done in the same way, at the same time as before, helps trigger their memories.  This helps reduce the stress and constant nagging that is otherwise needed to get people to do the most simple tasks.  Even saying the same thing ‘Hello Muriel, Alan here.  Would you like to come round to our place for lunch’ every Saturday morning.  It all helps.

b.      Repetition:  Similar to routine, by including ‘repeats’ of comments, instructions, suggestions etc. in your conversation with people with dementia, enables you to help keep them focused on the task in hand – e.g. going to the bathroom, getting on their coat and shoes to go to the car etc.  Similar to young children, such people can easily become distracted and forget what they were going to do.

c.       Slowness:  Often people with dementia can still work things out but need a lot more time to do it.  Don’t hurry them.  If the people are very elderly then their physical speed is obviously slow and we accept that.  However we also have to appreciate that their mental speed is also very, very slow.  This applies to understanding spoken comments, things that they see, even things that they taste, everything.

d.      Diversions:  Don’t try to deal with illogical or difficult behaviour by opposing it head on.  It just results in more problems.  When Muriel asks the whereabouts of her husband (who has been dead for twenty years) it is better to say ‘He’s not around now, would you like to watch the television, or play cards etc’.

e.       Security:  People with dementia forget where they are and why they are there.  They often feel the need to be somewhere else.  Knowing that even the frailest of elderly people seem to be able to show a good turn of speed when they have their minds on something, means that you should make sure that they cannot wonder off.  Front doors to houses need to be kept locked.  If the person is unsteady on their feet then they should not be able to wonder around the house unattended.  We found that a keypad security lock on the inside of the main door worked well.  Yes there is a risk in case of fire when Muriel is alone.  That is a one in a million risk.  The risk of Muriel wondering off is 100%, two or three times a day!

8.      What doesn’t work?

As you might suppose, the opposite to most of the things mentioned above:

a.       Avoid new things (or sudden changes):  Suddenly springing an appointment at the doctor’s or the dentist can cause a lot of upset.  Avoid anything new that you’ve not had time to ‘plant the seeds’ for.

b.      Avoid haste:  If you are in a hurry, forget it.  Things that take you 30 seconds can take an eternity for someone with dementia.  It takes 15-20 minutes for Muriel to stop what she’s doing, get her shoes and coat on and get out to the car.  Quick explanations are a waste of time.  If you don’t have time to do things slowly and repeatedly then don’t start them in the first place.

c.       Don’t be impatient:  This almost goes without saying.  Almost.  It helps to accept right from the beginning that for the next hour or whatever (until you can hand over to someone else) you will just have to bite your tongue and put up with repetitions, slowness and illogical behaviour.  If you are a saint, you can live with it.  If you are not, then you’re probably getting part of your intended punishment before it is due!

d.      Avoid telling lies:  When Muriel asks the whereabouts of her husband (who has been dead for twenty years), we were advised that we should say things such as ‘He’s just gone out and will be back soon’ etc.  We never liked the idea of this approach and tried to avoid it.  It usually caused more problems than it was worth anyway, by raising expectations and then a further endless round of questions that you can’t really (honestly) answer.

e.       Avoid being brutally honest:  Similarly, being brutally honest and saying things like ‘Your husband died twenty years ago Muriel’ can be dreadfully upsetting for an elderly person who has simply forgotten that twenty years have passed.  There is a middle way - stick to diversions.

9.   Planning ahead

True, you can't plan for dementia.  However there are other things that you can plan for, both for yourself and for elderly relatives.

Perhaps the most important thing to realise is, that when someone really can't cope any more and needs to move into a care home or have a hearing aid or even a walking stick, it's already too late.  It is human nature to put off changes (especially when we think they will be changes for the worse) but our experience has shown that putting things off only makes things a lot worse.

My advice is, if someone is starting to struggle with managing a house and garden, then persuade them to get into a retirement flat now.  Not next year or the year after.  They'll be far happier, will meet lots of new people with similar interests and probably have a new lease of life.

If people are struggling to live on their own, get them into a good care home.  Now.  It will take off the pressure involved in just looking after themselves (or relatives looking after them) and again give them a new lease of life.  Once dementia kicks in, it's too late for them to realise what's going on and just piles up the burden for relatives.

Get yourself Power of Attorney for elderly relatives.  It takes a few months but is well worth the effort by enabling you to deal with paying bills and sorting out health care etc when an elderly relative can no longer cope on their own.  Without Power of Attorney you won't have the authority to do anything, no matter how incapable the relative.

Get hearing aids and walking sticks sorted out while the person can still understand what is going on.  Once dementia kicks in, people who forget what a toothbrush is for are not going to be capable of learning how to use a walking stick or remember to use a hearing aid.

I wish that we’d known about the things mentioned above, a year ago.  It would have made life a bit easier for us and for Muriel.  I hope that it helps you.