Alexandra Legouix

TV Presenter, Singer (www.alsunflowers.com) and generally s hsppy, positive lass!

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Understanding Dementia - New Behaviour

Sorry for the delay,I am actually writing a new blog for you all at the moment but my Nan has recently gone in to a care home and it has all been very tough for the family (more of which I shall tell you about in my blog!). SO, I have been very quiet and as a result, this is a:

  REPEATER! But I thought you might still find it useful...

Ok… So this weeks Dementia blogs are all about ‘new behaviours’ we may be experiencing in our loved ones.

I mentioned last time about Nannans hallucinations and the fact that i was relieved to hear they are hallucinations and not ghosts that have come to live with us. That said, last night I walked past her room and she was chatting away clearly to this young girl again. Really coherently too! The girl was obviously colouring in a picture because Nan was saying things like “Now what are they you are colouring in there…. Ooo oranges AND lemons arent you a clever girl… and where did you get those crayons?… Ahhh… and what are they there in that picture?… Gosh well there are lots of soldiers there!…*giggles*… Well maybe when you go to the church at the weekend you will…” and so on. It went on for a good ten minutes and it didn’t necessarily stop, I just got a bit freaked out and decided just to go to bed myself and not listen any longer!! 

Im not saying that I do now think Nannan actually IS talking to ghosts, but the fact that her ‘sleep talking’ seems to last so long and is so coherent - and its always to this same girl that Nannan has sworn blind to Mum apparently that she IS THERE has made my equally over active brain get scared… but anyway, you can decide for yourselves on that one haha… Apparently there’s a man that sings to Nannan in the mornings too now according to mum.. well according to Nannan anyway but she told Mum that. At least they are nice ghosts…

Ok anyway. So.. this is obviously fairly new behaviour.. or at least certainly her ghostly sightings/hallucinations started a few months ago.

This is all well n good. Funny hallucinations etc but often the ‘new behaviour’ we experience with out loved one is not actually all that fun/nice/funny etc.

EXAMPLES OF ‘NEW BEHAVIOUR’

  Suspicious

Argumentative

Irritable

Rudeness

Resisting help and advice

Passive and apathetic

Obsessional and routine bound

Blaming others

Aggressive

Possessive

Clingy

Too trusting

Blaming

These are just some of the new behaviour’s you may be experiencing.  The 'Suspicious' characteristic seems to come up time and again for people. Nannan has been known to accuse people of stealing her things / money and usually it is because she doesn’t remember that she put them somewhere in the first place of course.

Last week, I was sitting in the care home (Nan stayed there for a week while Mum was away) and one of the old dears came in to the lounge in a right old state, loudly asking who had stolen her coat. She kept saying that she NEVER leaves it alone and that she had it in her room  but now its vanished so it must have been stolen.  She hunted round the lounge area; the carers hunted round the lounge, dining area etc. This lady came over to me and then told me how you have to be so careful these days because people will take things so quickly.

Two minutes later, a carer comes in with the lady’s coat. Where was it? it was in her cupboard hanging up… But the lady was so unconvinced. She said she definitely did not put it in the cupboard and someone obviously put it in there without her knowing etc. Nannan found this all very amusing, obviously not recognising that she does exactly this too sometimes!

Wouldn’t we do this too if we genuinely thought we had put our coat/purse/money/bag/book etc somewhere too only to find that a few minutes later it has mysteriously vanished and definitely is NOT where you put it?!

The ’Rudeness’ trait is very common too. Ill go into a bit more detail scientifically in a second but, you may well have noticed, that suddenly your pal doesn’t seem to realise they are actually being very rude - often very loudly too!

Going back to Nannan last week… this same lady who had lost her coat was sitting near us - well within earshot and Nannan proceeded to VERY loudly tell both Joan (her friend) and I that “that lady is in fact a MAN!” She could tell because “just look at the state of his wig, you can see all his brown hair underneath it and the wig is just sitting on top”… Nannan then kept on saying “and just imagine being that big! Urgh! Horrible”… I was like, Nannan you are going to get us kicked out!!!  She didnt realise/care/understand that what she was saying was rude.

It wouldn’t have been quite so bad if two minutes later she hadn’t repeated it all again… then again a few minutes later… then again… you get the jist.  Luckily, i think the poor lady was as bad as Nannan and probably heard and kept forgetting too or just couldn’t really hear us anyway ;-)

(Please don’t think I am belittling when I joke by the way. I am not. But we HAVE to have some light relief because it makes it easier to deal with and ITS OK to do that.)

Ok so I won’t go into detail and provide examples of each ‘new behaviour’. i am sure you all have your own stories to tell and - may I add - PLEASE do share them with us. Everyone benefits from hearing about others situation.

    WHAT DOES IT FEEL LIKE TO CARE FOR SOMEONE WITH MEMORY DIFFICULTIES?

    Just some of the ways I am sure you do/have/will felt/feel:

Frustrated

trapped

helpless

tired

worried

rewarded

responsible

resentful

angry

sadness

burdened

regretful

loss

stressed

guilty

The list is endless. The most important thing to remember is that it’s ok to feel these things. And also, it isn’t always negative. Obviously, the overriding feelings are generally negative and painful but, for example, over the last few weeks I have had some of the most amazing moments with Nannan. I have heard about her youth. I have heard about her times in the War. I have heard about how she fell in love with her husband. These are the important bits and I intend on hearing them again and again while she can still remember them.

But re the negative side of it all? Well, everyone has these bad feelings. What a relief to hear that other people also feel angry, frustrated, irritable… It helps take away that gnawing guilty feeling I think.. the knowledge that there are so many other people in the same boat. That is one of the main reasons I am writing this. I know how much it has helped mum to know there are others out there who feel like they cannot cope either.

So let’s talk about some coping strategies.

EMPATHY

This is a key word. Learning empathy is key and will really, really help.

Let’s do an exercise.

Can you remember an occasion when your memory let you down?

    How were you feeling at the time

What were you thinking

What did you do? How did you react?

Ok. Well I remember when I was about 15 and I totally forgot my mums birthday. She took me to school and said nothing. i got to school and got to my first class and then we wrote the date in our exercise books and, well:

oh. my. god. the shame!! I was mortified. Shocked at my ability to forget such an important date. Panic stricken. Embarrassed. Nervous

I have really, really let Mum down. How can I fix this? What can I do? I feel so guilty. How must she be feeling?I spent the day in panic. Very sad. Very nervous

. I bought her some flowers on the way home. I apologised. I never did that again!

Names, faces, birthdays.. all things that we forget. If it wasn’t for Facebook i’d forget everyone’s birthday I think… On Saturday afternoon I was about to go on stage and a couple came up to me and said ‘Alex, hey!’. I literally couldn’t put the face t a name and yet I KNEW I knew him. And properly knew him to! But I couldn’t place him for the life of me. I had to actually ask him how I knew him and he told me that he lived with my brother during the three years my bro was at Bournemouth Uni! They were best mates! I knew him well, but god I just could not remember his name!…. Sorry Martin!!

Anyway, you know the feeling… The point is, these are OUR thoughts and feelings and we can rationalise what just happened and try to fix it. If you are with someone with dementia, you don’t get to hear their thoughts and feelings, you only see their action. Their action may be showing panic, accusing, checking repeatedly, blaming, anger, stress, anxiety, crying… they are less able to verbalise what is happening. Less able to explain what has caused this reaction. We are able to retrace, question, verbalise… your loved one cannot necessarily do this bit.

Can you understand that by remembering how you felt when you KNEW you had done something / knew you SHOULD remember something or someone, but you just can’t will really help with empathising with your pal?

    'Blame' i mentioned in the list of traits at the top. Often, it is much easier to blame someone else than admit defeat too. It absolves the person from responsibility then. ‘Blame’ is a really natural defence to stop yourself from feeling vulnerable. So if you can hook in to the memory of how you felt about yourself then maybe the empathy exercise can help.

WHAT WE ALL NEED TO BE HAPPY

    Tom Kitwood, is a professor in person centred care. He spent a lot of time with people suffering with Dementia.

Before he came on the scene everything was blamed on dementia. But Tom did a study and he looked at how people were treated and how they ended up acting as a result from this treatment.

Dementia, and the way you act with your loved ones, affects their petals.  We need ALL our petals to make our person-hood.

As dementia increases, the petals decrease. Sufferers lose a sense of who they are; their roles change - Mother becomes daughter, Father to son; ‘socialness’ is affected - they no longer want to go out / meet friends, so life is increasingly restricted; they are embarrassed, scared; they no longer work so do not have a ‘need’; the list goes on.

As the carer, if there is anything you can do to increase just ONE side of a petal, then that’s the best thing ever :-)

Al x

@legouix

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'The best thing I ever did was stand up and say I have Alzheimer's': Terry Pratchett speaks to Fiona Phillips

In case you missed this article.....(Taken from: http://www.mirror.co.uk/news/uk-news/terry-pratchett-speaks-to-fiona-phillips-1434665)

----

Since Terry first said he had the disease in 2007 I had always wanted to meet him and he, apparently, was keen to see me

On my way to interview Sir Terry Pratchett I tweeted about our meeting.

The responses ranged from: “How amazing! He’s a fabulous writer and totally awe-inspiring person”, to “I hope you find him as well as can be expected” and “You and he are both doing so much for dementia”.

And that’s why we were meeting. To discuss his life now that it includes being the highest profile campaigner for Alzheimer’s while actually living with the disease.

The Discworld author first said he had it in December 2007, just over a year after I’d lost my mum Amy to early-onset Alzheimer’s.

It was a particularly bleak period as we were told that my dad Neville also had it.

Until then, I’d felt a bit of a voice in the wilderness, going on about the lack of understanding and good care.

Terry’s honesty was a eureka moment for me. Since then I had always wanted to meet him and he, apparently, was keen to see me.

But it didn’t seem that way when I introduced myself and went to shake his hand.

Dressed from head-to-toe in his trademark black, a top hat and frock coat, he looked like an authoritarian Dickensian char­­acter from his Oliver Twist-inspired novel Dodger.

When he didn’t offer his hand back my heart sank a little.

“He can’t see your hand,” his book publicist Lynsey explained.

Terry, 64, has a form of early-onset Alzheimer’s called PCA (Partial Cortical Atrophy) which affects the part of the brain responsible for visual signals.

As we sit down he reaches to fiddle with my phone, trying to make out what it is.

When I explain it is recording our conversation, he cheekily says “amateur!”

Terry’s twinkly-eyed humour made me, by contrast, recall my mum’s constant tears and depression.

“It surprises me. It surprises my specialist,” he tells me.

He has written eight books since his diagnosis and his doctor has told him he has “Terry Pratchett’s PCA, which isn’t like anyone else’s PCA.”

He can no longer use a keyboard but, instead, has a program which enables him to talk to his computer.

So, how else has his illness affected him?

“Words escaping just about the time you’re going to say something. You’ve got it lined up and suddenly it just slips away,” he says.

His words are very considered, his answers long and drawn out.

If he forgets a word there’s a silence as he cogitates, before returning to the point where he left off and continuing the anecdote.

I try not to ask too many questions so as not to interrupt his thoughts. You can almost hear the determination to hang on to facts and to maintain his fluency.

I ask him if he has trouble getting dressed, which is one of the first signs that a person may have cognitive difficulties and we joke about the fact that being dressed all in black makes it pretty hard to screw up.

“You’ll notice,” he adds naughtily, “that my hat is not on upside down.”

I note that his pants aren’t on his head either, which was sometimes the case with my dad.

“Well, pants are pants on the whole,” he chuckles, “and it’s not particularly easy to get them on back to front.”

As with most of us, Terry finds that a routine helps maintain his daily existence.

“I get up, pop my pills,” he says, referring to Aricept and Ebixa which can, in some cases, temporarily arrest the progress of Alzheimer’s.

He’s been paying for the drugs since he was diagnosed in his late 50s because you have to be 65 to get them free.

“I’ve got money, so I don’t notice,” he remarks, “but it annoys me.”

Does he appreciate that his experience of Alzheimer’s is a more privileged one than most?

“Oh, absolutely,” he says before mulling over the fact he’s still “fit for purpose if that purpose is to spend most of the day writing books.”

His books have sold more than 70 million copies and Terry is now almost as well known for talking honestly about living with Alzheimer’s but says: “I don’t like to be an icon in this matter because there are people far, far worse off.”

Then he says something astonishing: “I think the best thing I ever did with my life was stand up and say I’ve got Alzheimer’s.”

Terry, who married Lynne 44 years ago and has a 36-year-old writer daughter Rhianna, tells me that as a young journalist he was told never to use the word cancer, “as people were sensitive”.

The first time he heard it used was when broadcaster Richard Dimbleby died in 1965.

“And at last it seemed as though someone had opened a window and people were talking about it and so...”

At this point he loses his train of thought, concentrates, says: “I’m tripping over myself.”

Gathering his thoughts Terry adds: “Let me go back to the beginning of the sentence. I get all my clauses in the wrong place.”

He goes on to explain that once he was diagnosed it was almost as if he’d been told: “OK, you’ve got it, now go home and get on with it.”

I tell him the same thing happened to my parents.

Terry says: “If it was cancer it would be sorted. But with this you and your spouse are left in the lurch”.

It was then he decided to “tell everybody” about his Alzheimer’s.

He says he knows “a couple of well-known people” who have the disease “and aren’t saying” and he’s told them they could do so much good by opening up.

Mind you, his time hasn’t been his own since sharing his diagnosis.

“People come up to me in the street and tell me about their mum, their granny.

"One time, in Salisbury, a big lorry screeched to a halt and the man was in tears, talking about his mum.”

I wonder how Lynne, the spouse “left in the lurch”, is coping with the changes.

Terry says: “Hmmm, what’s the average day? Two cups of tea in bed, talking about stuff, me going down into my bathroom, do the pills... go and pick up pants.

“Lynne’s quite methodical about where stuff’s left. I know where to find the clean stuff and I put the dirty stuff in the other bag.

"Then I go down, open up the chicken coop and feed them, then I open up the chapel which is where I work... go for a walk... and that’s it.”

Does he ever get depressed? “No, my father was a stoic,” he replies before asking about my father.

I tell him he was killed by the overuse of drugs for his Alzheimer’s. “Ah, so that was murder,” he exclaims.

Then Terry expands, moving on to assisted dying. “My dad said to me when he knew he was dying... ‘if you ever see me just lying there with pipes and tubes, tell them to shut me down’.

“He was in a nice hospice but my mother had to watch him more or less start looking like an Egyptian mummy.

"The nurses were filling him with morphine, so that is an assisted death in the first place, so why go through all that s***e?”

He tells me he has Tony Nicklinson’s picture in his writing room and is furious that “he had to starve himself to death” instead of being allowed the right to die.

“If someone is compos mentis and his plea to die is witnessed by two doctors, how can an assisted death like that be murder?”

So, does Terry have an end-of-life plan? “Yes, I plan to die... it’s all the rage,” he cheekily retorts.

“I have a living will and I have friends, and I have money and I have hope.

“There are things around and I know where they can be got quite easily but I quite like waking up to the sunshine.

"I don’t think about the end game. I’ve got lots to occupy my mind. It’s the rage that keeps me going.”

And long may he rage against the dying of the light. I, for one, will always hold a candle to him.

Terry Pratchett's latest book, A Blink of the Screen: Collected Shorter Fiction, is available now.

http://www.mirror.co.uk/news/uk-news/terry-pratchett-speaks-to-fiona-phillips-1434665

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Coping when a loved one has Dementia - How do you cope??

Hey

So. I will only touch on this briefly now really as they do a big bit on 'Helping us as carers' later on in the course so Ill get more proper information then. But in the meantime...

ARE YOUR NEEDS BEING MET?

Can you relate to these words when thinking about how YOU are feeling?

frustrated

trapped

helpless

tired

worried

responsible

resentful

angry

sad

burdened

regretful

stressed

There are a million more but that's a good start...

I touched on this a bit in the last blog, but focussed the attention more on what you can do to help your sufferer rather than what you can do.

Everyone has a million and one things to be doing/thinking about/worrying about/caring about ON TOP of worrying/caring about/helping their dementia induced pal. 

At the moment, at Mum's, its quite hard. Not only do we have an old biddy sitting in the front bedroom, we also have a lot of old animals!

While Mum was away I had a mission with poorly animals too. Tasha - the German Shepherd - is currently in the vets having scans today as she is having constant diarrhea and despite us taking her to the vets three times last week and getting various treatments for her, she is not getting any better. So today they are running scans for liver problems, pancreas problems, and so on.

Then, Mischief - my liddle puddy tat - has been having issues with her ears and is self harming.

So I took her to the vets and got her various creams and a collar which I tried on her for about a 5 minutes before I took it off because I felt so guilty that she kept walking into everything!

And now this morning mum woke me up to tell me that my horse, Ty, has a hind leg that is twice the size it should be and he can barely walk on it.

So. His leg has been hosed and he is out. It seemed to improve a bit once he was moving a bit but he is far from good and the vet will definitely need to come out.

Never rains huh!! But hey. Life could be much worse!! :-)

So anyway, what i am trying to say is that there are lots of other things that need your attention too so don't feel guilty if there are things - good or bad - that are demanding of you or taking you away from doing all these various things I have written about in my blogs. For example, I haven't managed to buy Nannan some stickers to sort her remote control out. I have to remind myself that she never knew I was going to, so it is not upsetting her, or anyone else for that matter. I have a life to lead and so do you! But I do keep thinking 'argh, i must get those stickers and do that!' and I will, but its ok that I haven't done it yet. the important things are being done. Nannan has a cup of tea that ive made her and she is warm right now :-)

So. Are YOUR needs being met?  Again, lets look at the Tom Kitwood diagram:

Without a doubt you will be feeling trapped; like you don't get to see yoru friends as much; like you can't enjoy your own life/retirement/hobbies/children/grandchildren/marriage/partners and so on. It is SO important that you make time for these bits too.

There is a good analogy. Imagine a glass holding water. You are the glass. Your loved one is the water.  if you don't make sure that you are looking after yourself, cracks will appear in the glass and gradually, if the cracks aren't fixed, the water will run all over the place.

Caring for a loved one with dementia and feel really overwhelming and stressful. 

In my last blog I mentioned 'New Behaviours' and one of them was 'A lack of empathy' So here i am, telling you how important empathy is, when your loved one is gradually losing that ability altogether! So, if that's the case then try and say something. IF you can do it in the right way, then certainly at fairly early stages, you can tell your pal how you are feeling. It may well help and make them less demanding. Maybe they need prompting to be empathetic.

STRESS REDUCING TECHNIQUES

Don' interfere if you don't need to

Adjust your expectations of what the person can do

Concentrate on essential care tasks, the rest can wait

stop what you are doing - try again later

Peaceful surroundings

Avoid doing something that you know will cause agitation when the person is tired

WHICH OF THESE DO YOU HAVE MOST CONTROL OVER?

Jury was out on this one in the meeting last night but the psychologist said - and I agree - the only bit that you can really and truthfully have control over are your actions.

Try, for the next 30 seconds, to NOT think about a PINK ELEPHANT...

Impossible huh?

But you can avoid talking about the pink elephant.

DONT JUDGE YOURSELF for what you are feeling or thinking. You cannot control them fully or make them disappear.

You have most control over your ACTIONS but again, you aren't expected to be perfect. It is impossible to be so. But look at it all like this:

FACT: We know you cannot switch off your brain so just don't stress yourself about what you are thinking or feeling. Forget about trying to change that. Take the pressure off yourself by thinking that the only bit you need to look at are your actions. Just work on that box and just accept you will feel the other bits no matter what!!

SOME IDEAS FOR COPING

Walk away

Walk the dog!

Take a break

Count to ten

Take ten breaths

Notice five things

Talk to someone else

Meditate

Talk to someone else who is dealing with it too

Ask people to help you

I have some more to write but the vet has just called about Tasha so I have to go but i will write more when I can

Hope its helping folks xxx

[alexandralegouixpresenter]

Understanding Dementia - Coping with new behaviour continued...

Hey y'all

So yesterday I started writing about 'New Behaviours' and how to cope with them.

Empathy is the key word, but that really is easier said that done.

Yesterday I watched a dvd that featured fairly young people with dementia. Remember, it isn't just 'old' folk who get it. These people were late 40's upwards. Really sad. So, although you may be reading thinking this bit isn't applicable to you - it may not be directly - but what was interesting was the things they were saying about how THEY felt about having dementia. These are some of the things they were saying:

"Some days things seem to be in a mist... other days I am fine"

"Some days I feel all alone"

"I just began to notice that I was making mistake and doing rather strange things"

"It was very awkward. I didnt realise it had anything to do with me"

"I thought I was going mad. the doctor said I just had depression and it was a long, long time when noone knew what was wrong"

"The doctor didn't tell me. He asked me to leave the room. then he told my wife"

"I feel incapable. I am treated like a child"

"People assume everything is wrong with me and that it's not just my memory. Suddenly people help me with putting on my coat or helping me cross the road! As if I am going to suddenly lose that ability!"

"Its really frightening, giving up work, giving up your car. Your brain goes in to a kind of cloud"

"People are diminishing you by taking away your ability"

And so on... Now these are statement from younger people. Naturally, in most cases the sufferer is 'old' and DOES need help with things on top of the dementia of course. The fact is, Nannan cannot dress herself very easily; she could't just cross the road; she cannot drive etc. But it was interesting to hear how younger people felt because there are many older people who ARE still pretty able and they will be feeling very similar things.  One of the points Nannan does make is that she will never understand why she had to stop driving and we took away her car.

So it takes you back to the Tom Kitwood diagram I uploaded yesterday describing 'What we all need to make us happy' - just because someone has dementia and is losing their ability to remember, it doesn't mean they are suddenly incapable of doing everything else. Try to make sure that if you are suddenly helping them with menial tasks that it is because they genuinely cannot do it for another reason, and not because you just think they are incapable because they will feel like they are losing their petals.

Infact, because one of the petals that is often taken away very early on is 'Occupation' then assigning your pal a 'job' to do is actually a rewarding thing for them.

PROBLEM SOLVERS FOR YOU!

OK I have some problem solvers for you.

Here is Harold, the ex bank manager

He always liked to look smart...

But, his wife came home to find:

He had cut a hole in his suit jacket

What happened?

clue: A discarded sandwich on the side

Answers on a postcard ;-)

...

This is Norman and Peggy:

Normans garden:

But as Norman has gotten worse, so has his lawns because he keeps mixing two bottles together in the shed before putting them on his grass:

 and 

Norman is angry that he has always had an amazing garden but now he hasn't. His wife, Peggy, has always been rubbish when it comes to the garden, but she can obviously see what the problem is. But Norman cannot bare the fact that she is telling him what he should do when it's a subject she knows nothing about...

What do you think she should do to help stop it?

Answers on a postcard ;-)

This is Joyce

Intruders broke into her bungalow

Joyce was so scared after that. She wasn't sleeping. She would stay up all night fearful that it would happen again. Her family moved her into a care home.

She started dragging her furniture up against the door of her room every night before bedtime.

What could they do to stop this from happening each night?

These are all true stories that have happened to people on the course. This is not unusual behaviour for someone with dementia - or, at least, it's not unusual for a sufferer to not be able to work out how best to cope with these types of situations.

IS ALL BEHAVIOUR TO DO WITH THE BRAIN DAMAGE?

How do you know if their behaviour is simply the dementia talking/acting or has it got something to do with how you are acting around them/talking to them?

If the new behaviour is pervasive (constant and continuous), it is more likely to be due to the brain damage itself

Repetitive; ritualistic; unawareness; rudeness; impoliteness; antisocial behaviour; insecurity; total lack of empathy; bigoted; dis-inhibition; impulse control is diminished - all behaviour like this is more likely to be due to brain damage.

This is because their is damage to the FRONTAL LOBE - damage to the sensors that regulate emotions and behaviour.

So there are lots of things we think about people, things, situations but we know not to say them - like in the case of Nannan loudly telling us that they lady next to her in the care home was actually a man. Someone with frontal lobe damage loses their impulse control. This diminishes insight and judgement.

If, on the other hand, it only occurs in certain situations  it is more likely to be a reaction to a specific event or experience

Learn to look at behavior as a form of communication. What does a person’s behavior communicate to us? It may be our behavior that is a problem.

Your behaviour may be the “challenging” one

To work out which way round it is: Define the problem clearly. Ask yourself:

What happens?

When?

For how long?

Is there a pattern?

Consider the cause...Try to think broadly - use your knowledge of the person - their personality - likes and dislikes

Can you identify a specific trigger? Has the environment changed? Look out for physical needs or illness. Think about emotional factors. Consider your approach and consider what is being expected of them. 

Are your expectations too high? It is really important to start narrowing down your expectations.

Im going to look into how it actually affects the carer in the next blog. But before i do that, please, when you read these do NOT feel guilty. I do not want people to be saying argh, i do that, and that, and oh no I do that too and I shouldn't have done that or said that etc.

This blog is not a 'bible' of course!! What do I know, im just a performer type!! But I am simply passing on information that I have learnt, read about, researched, and discovered through getting it wrong right with Nannan. Whatever you are doing IS right. Human instinct kicks in and takes over so trust that and know that EVERYONE is feeling the same as you.

No two people with Dementia/Alzheimer's are the same either.

Also, try to remember that there are parts of all this that are positive.

My positives: I have been hanging out with Nannan so much these last few weeks; I am cherishing every moment I get with her; Of course, she drives me crazy sometimes, but i have also had some amazing discussions with her and she was a cool cat in her young days; I am enjoying helping other people through the use of blogs and answering questions when I can about it all; I want to help my Mum deal with it all and make her life better; I want to feel that when the time comes, I have no regrets, no missed times, no questions I should have asked, and know that I did everything I could do make the process better, happier and more comfortable.

Laugh. Find the Joy! Use humor. It is the universal language. Everyone understands it.  Laughter builds relationship, costs nothing and  makes us feel good.

Al xx

Good resources:

Sometimes Ya Gotta Laugh by Karen Stobbe

Rethinking Alzheimer's Care by Sam Fazio, Dorothy Semen, Jane Stansell 

Alzheimer’s: From the Inside Out by Dr. Richard Taylor 

The Forgetting: Alzheimer's: Portrait of an Epidemic by David Shenk

Alzheimer's Early Stages: First Steps for Family, Friends, and Caregivers

by Daniel Kuhn, David A Bennett

The Best Friend’s Approach & A Dignified Life: The Best Friends Approach to Alzheimer's Care, 

A Guide for Family Caregivers by Virginia Bell, David Troxel 

Speaking Our Minds: Personal Reflections from Individuals With Alzheimer by Lisa Snyde

Learning to Speak Alzheimer's: A Groundbreaking Approach for 

Everyone Dealing with the Disease by Joanne Koenig Coste

Talking to Alzheimer's: Simple Ways to Connect When You Visit with 

a Family Member or Friend by Claudia J. Strauss

Alzheimer's: Finding the Words by Harriet Hodgson

Forget Memory by Anne Davis Basting

[alexandralegouixpresenter]

My friend's story...

While I was writing that last blog, my friend messaged me with his story. he is happy to share it and I think it is good to share people's stories. That said, it isn't a happy one so please don't read it if you don't think you can.

"It was a long and debilitating disease, and in the end it was a release for all of us. For Grandad and his daughters most of all!

Dementia is a term that people just don't really understand.  Mum would take Nanna to Tesco often to do her shopping. She told the cashier that her mum had dementia so that the woman could be a little more understanding of the fact that Nanna had no short term memory at all. The woman replied with..."well why have you brought her here?" Quite disgusted she was apparently!

 Its a disease that is a thief. It steals the person you love from right in front of you. Slowly but surely, they lose all short term memory, then their long term memory, and eventually, their bodies basically 'forget' how to operate. I spent some time watching some of the clients of a home for dementia sufferers....it was AWFUL! To see these once proud people reduced to shuffling husks was heartbreaking!

There are some techniques that have been developed to work with dementia sufferers, its like traffic lights. They are the expert, dont argue with them. If you argue with them, it confuses them and they go from a green to an amber straight away… If you dont back down and distract them from that, it can lead to them becoming a red, and that means meltdown….

 The early stages are really hard to spot, so we are not sure how long… we reckon we can date it back at least 10 years and she died at the beginning of this year.  My wife’s grandad died of alzheimers, so she's really familiar with this as well

The thing is that people dont really understand what dementia is. I would often refer to her condition as alzheimers, as people seem to have a better understanding of what that is!

Nanna never knew my children - they were just small children that belonged to’ that man over there’. Grandad became 'Uncle charles' for the last year or so. Uncle charles was her sisters husband who died about 20 years ago

  Nanna and grandad were married for over 60 years, and dementia stole all of that from them!

  We had all of the photo books and memory joggers and so forth but it actually means nothing when it gets to a certain point because the faces mean nothing

 I heard an analogy that likened it to a computer (which I suppose the brain is after all). You go looking for the reference to a stimulus in the 'my documents' section of your hard drive but when you go to where you think it should be, its not there, so you panic and it’s just that, more and more of the 'hard disc' gets corrupted untill the computer just breaks down

Im in tears as I write this Al but the end has really been a release."

Hugs to you and your family xx

  ·    

[alexandralegouixpresenter]

Understanding Dementia - New Behaviour

Hey folks

Ok... So this weeks Dementia blogs are all about 'new behaviours' we may be experiencing in our loved ones.

I mentioned last time about Nannans hallucinations and the fact that i was relieved to hear they are hallucinations and not ghosts that have come to live with us. That said, last night I walked past her room and she was chatting away clearly to this young girl again. Really coherently too! The girl was obviously colouring in a picture because Nan was saying things like "Now what are they you are colouring in there.... Ooo oranges AND lemons arent you a clever girl... and where did you get those crayons?... Ahhh... and what are they there in that picture?... Gosh well there are lots of soldiers there!...*giggles*... Well maybe when you go to the church at the weekend you will..." and so on. It went on for a good ten minutes and it didn't necessarily stop, I just got a bit freaked out and decided just to go to bed myself and not listen any longer!! 

Im not saying that I do now think Nannan actually IS talking to ghosts, but the fact that her 'sleep talking' seems to last so long and is so coherent - and its always to this same girl that Nannan has sworn blind to Mum apparently that she IS THERE has made my equally over active brain get scared... but anyway, you can decide for yourselves on that one haha... Apparently there's a man that sings to Nannan in the mornings too now according to mum.. well according to Nannan anyway but she told Mum that. At least they are nice ghosts...

Ok anyway. So.. this is obviously fairly new behaviour.. or at least certainly her ghostly sightings/hallucinations started a few months ago.

This is all well n good. Funny hallucinations etc but often the 'new behaviour' we experience with out loved one is not actually all that fun/nice/funny etc.

EXAMPLES OF 'NEW BEHAVIOUR'

Suspicious

Argumentative

Irritable

Rudeness

Resisting help and advice

Passive and apathetic

Obsessional and routine bound

Blaming others

Aggressive

Possessive

Clingy

Too trusting

Blaming

These are just some of the new behaviour's you may be experiencing.  The 'Suspicious' characteristic seems to come up time and again for people. Nannan has been known to accuse people of stealing her things / money and usually it is because she doesn't remember that she put them somewhere in the first place of course.

Last week, I was sitting in the care home (Nan stayed there for a week while Mum was away) and one of the old dears came in to the lounge in a right old state, loudly asking who had stolen her coat. She kept saying that she NEVER leaves it alone and that she had it in her room  but now its vanished so it must have been stolen.  She hunted round the lounge area; the carers hunted round the lounge, dining area etc. This lady came over to me and then told me how you have to be so careful these days because people will take things so quickly.

Two minutes later, a carer comes in with the lady's coat. Where was it? it was in her cupboard hanging up... But the lady was so unconvinced. She said she definitely did not put it in the cupboard and someone obviously put it in there without her knowing etc. Nannan found this all very amusing, obviously not recognising that she does exactly this too sometimes!

Wouldn't we do this too if we genuinely thought we had put our coat/purse/money/bag/book etc somewhere too only to find that a few minutes later it has mysteriously vanished and definitely is NOT where you put it?!

The 'Rudeness' trait is very common too. Ill go into a bit more detail scientifically in a second but, you may well have noticed, that suddenly your pal doesn't seem to realise they are actually being very rude - often very loudly too!

Going back to Nannan last week... this same lady who had lost her coat was sitting near us - well within earshot and Nannan proceeded to VERY loudly tell both Joan (her friend) and I that "that lady is in fact a MAN!" She could tell because "just look at the state of his wig, you can see all his brown hair underneath it and the wig is just sitting on top"... Nannan then kept on saying "and just imagine being that big! Urgh! Horrible"... I was like, Nannan you are going to get us kicked out!!!  She didnt realise/care/understand that what she was saying was rude.

It wouldn't have been quite so bad if two minutes later she hadn't repeated it all again... then again a few minutes later... then again... you get the jist.  Luckily, i think the poor lady was as bad as Nannan and probably heard and kept forgetting too or just couldn't really hear us anyway ;-)

(Please don't think I am belittling when I joke by the way. I am not. But we HAVE to have some light relief because it makes it easier to deal with and ITS OK to do that.)

Ok so I won't go into detail and provide examples of each 'new behaviour'. i am sure you all have your own stories to tell and - may I add - PLEASE do share them with us. Everyone benefits from hearing about others situation.

WHAT DOES IT FEEL LIKE TO CARE FOR SOMEONE WITH MEMORY DIFFICULTIES?

Just some of the ways I am sure you do/have/will felt/feel:

Frustrated

trapped

helpless

tired

worried

rewarded

responsible

resentful

angry

sadness

burdened

regretful

loss

stressed

guilty

The list is endless. The most important thing to remember is that it's ok to feel these things. And also, it isn't always negative. Obviously, the overriding feelings are generally negative and painful but, for example, over the last few weeks I have had some of the most amazing moments with Nannan. I have heard about her youth. I have heard about her times in the War. I have heard about how she fell in love with her husband. These are the important bits and I intend on hearing them again and again while she can still remember them.

But re the negative side of it all? Well, everyone has these bad feelings. What a relief to hear that other people also feel angry, frustrated, irritable... It helps take away that gnawing guilty feeling I think.. the knowledge that there are so many other people in the same boat. That is one of the main reasons I am writing this. I know how much it has helped mum to know there are others out there who feel like they cannot cope either.

So let's talk about some coping strategies.

EMPATHY

This is a key word. Learning empathy is key and will really, really help.

Let's do an exercise.

Can you remember an occasion when your memory let you down?

How were you feeling at the time

What were you thinking

What did you do? How did you react?

Ok. Well I remember when I was about 15 and I totally forgot my mums birthday. She took me to school and said nothing. i got to school and got to my first class and then we wrote the date in our exercise books and, well:

oh. my. god. the shame!! I was mortified. Shocked at my ability to forget such an important date. Panic stricken. Embarrassed. Nervous

I have really, really let Mum down. How can I fix this? What can I do? I feel so guilty. How must she be feeling?I spent the day in panic. Very sad. Very nervous

. I bought her some flowers on the way home. I apologised. I never did that again!

Names, faces, birthdays.. all things that we forget. If it wasn't for Facebook i'd forget everyone's birthday I think... On Saturday afternoon I was about to go on stage and a couple came up to me and said 'Alex, hey!'. I literally couldn't put the face t a name and yet I KNEW I knew him. And properly knew him to! But I couldn't place him for the life of me. I had to actually ask him how I knew him and he told me that he lived with my brother during the three years my bro was at Bournemouth Uni! They were best mates! I knew him well, but god I just could not remember his name!.... Sorry Martin!!

Anyway, you know the feeling... The point is, these are OUR thoughts and feelings and we can rationalise what just happened and try to fix it. If you are with someone with dementia, you don't get to hear their thoughts and feelings, you only see their action. Their action may be showing panic, accusing, checking repeatedly, blaming, anger, stress, anxiety, crying... they are less able to verbalise what is happening. Less able to explain what has caused this reaction. We are able to retrace, question, verbalise... your loved one cannot necessarily do this bit.

Can you understand that by remembering how you felt when you KNEW you had done something / knew you SHOULD remember something or someone, but you just can't will really help with empathising with your pal?

'Blame' i mentioned in the list of traits at the top. Often, it is much easier to blame someone else than admit defeat too. It absolves the person from responsibility then. 'Blame' is a really natural defence to stop yourself from feeling vulnerable. So if you can hook in to the memory of how you felt about yourself then maybe the empathy exercise can help.

WHAT WE ALL NEED TO BE HAPPY

Tom Kitwood, is a professor in person centred care. He spent a lot of time with people suffering with Dementia.

Before he came on the scene everything was blamed on dementia. But Tom did a study and he looked at how people were treated and how they ended up acting as a result from this treatment.

Dementia, and the way you act with your loved ones, affects their petals.  We need ALL our petals to make our person-hood.

As dementia increases, the petals decrease. Sufferers lose a sense of who they are; their roles change - Mother becomes daughter, Father to son; 'socialness' is affected - they no longer want to go out / meet friends, so life is increasingly restricted; they are embarrassed, scared; they no longer work so do not have a 'need'; the list goes on.

As the carer, if there is anything you can do to increase just ONE side of a petal, then that's the best thing ever :-)

I need to go to bed but I'll write some more tomorrow

Nitey all

Al xx

@legouix

[alexandralegouixpresenter]

Does your birth-date determine your success?

Hey guys... 

A bit off track after all my posts about Dementia. But the next Dementia course isn't until Monday so Ill write more then, then :-)

At the weekend, the man and I went to the Audi International Awards with the guys I am making Road2Race with (JBS, Custom Code). After dinner, we were chatting about 'success' and ambition etc and James (Bradley-Silverstone) reminded me of an excellent book by Malcolm Gladwell called "Outliers - the story of success". I read this book earlier this year having just thoroughly enjoyed his first book "The Tipping Point" which is mostly about Marketing etc.

"Outliers - a story of success" - as the title suggests, is about success. According to Gladwell "the book grew out of a frustration I found myself having with the way we explain the careers of really successful people. You know how you hear someone say of Bill Gates or some rock star or some other outlier—"they're really smart," or "they're really ambitious?' Well, I know lots of people who are really smart and really ambitious, and they aren't worth 60 billion dollars. It struck me that our understanding of success was really crude—and there was an opportunity to dig down and come up with a better set of explanations."

And so, he did just that.

In one of the chapters, Gladwell points out that in the league tables in America, there is a surprising amount of soccer AND hockey champions who were all born in Jan, Feb and March.  A disproportionate amount.

What am I talking about you ask? Right well, without spoiling the book too much, ill explain it in my own way.

When we go to school, we are most crucial developmental stage of our life yes?  So. In a school year, in the SAME class (we have 30 students say) some of the students will have been born in September - after September 1st; and some will have been born in the end of August. Almost a year's difference in age and yet the students will be in the same class.

From the very first year of school: Nursery/Infant all the way to early 20's at University, students are divided as such. According to www.ifs.org.uk "In England, the academic year runs from 1 September to 31 August, so that a child born on 31 August will start school (and sit exams) up to a year earlier than a child born only one day later, on 1 September".

In 2010 I graduated with my Post Graduate DTLLS (PGCE Equivalent). I had spent two years training to be a teacher - whilst teaching at a college/university - and not once did any of my training cover the differences between students ages and how this could have a major impact on our students characteristics, skills, personalities etc. And there doesn't seem to be a vast amount on this either!!

According to Gladwell, one of the reasons that January, February and even early March are great months to have children that will excel in sports is because that many youth athletic agencies have birthday cutoffs on January 1st. So the January, February child birthdays will be able to play down in age groups and still remain the largest, strongest kids on the teams. Essentially, they have a 10-month head start on the kids in their ‘age group.’

I was born on May 25th. When I was at school, the students born in September (in my class) were often the brighter kids! A generalisation yes, but it definitely made a difference. This is not to put down people who were born in the latter half of the school year - I was in top sets across the board, so I'm even saying it isn't necessarily the case - but it has got me thinking... What do you think about it?

I am also quite into my astrological signs and I have always been under the impression that people born in the May, June, July, August are seen as the 'creative' types simply because that's what the 'charts' say! But what if it actually does have something to do with the fact that some people, born in those months, will have gone through their school and development years, being the 'underdog' educationally and automatically leaned towards their creative side more because that was an option they could push more easily without a threat.

A Leo is considered creative and in need of being the centre of attention - is that because they would have always been the youngest in class and would have played on this and possibly been more of an 'underdog' and, as a result, more demanding? A Virgo is considered the 'perfectionist' sign and Virgo's are often seen as the worker bees - is this because they have always been pushed more, have always been expected of much, and have always been the 'oldest'?

I'd be really interested to do a study on this and take it to a greater depth. Are the people born in September - December time generally more able because they were further ahead at school physically and mentally so their skills were pushed more? Are they more likely to go in to a more traditionally thought 'intellectually demanding' job because they were seen as brighter, faster, more developed at school so they were given more opportunity to be pushed further? We all know that the sets you are put in when at school actually do result in having quite a major impact. If you are only in the middle/lower Math set then the maximum grade you can achieve in your GCSE is a D/C. No matter what!  According to Gladwell, the best months to give birth to a sports champion is Jan/Feb/March because many of the agency cut off's are Jan 1st... should we be tailoring our baby making according to these facts?!

And why don't teachers study this in their own training??!

Hmmm... Me thinks ill look into this more... 

Anywhoo... worthy of a debate me thinks... :-)

Al

[alexandralegouixpresenter]

Coping when a loved one has Dementia - more useful things

Hey

Ok well i think this will probably be the last chunk of information stuff till next weeks session. Over the week Ill update though im sure :-)

Anyway... So before I go... Here are some final quick ideas and tips I learnt to deal with....

EVERYDAY MEMORY DIFFICULTIES

forgetting names

forgetting what they have been told

forgetting what they have done

forgetting the date, day, time

forgetting where they put things

getting lost

General points about Memory

STRESS impacts on memory. Really try to avoid making changes to household appiances. try to avoid putting them on the spot. ROUTINE supports memory.

Last blog I talked about memory books, family trees, memory boards but there are many other things you can use and what i have learnt new is that:

If you get them to help you write things down; write in the books; create the family tree; name the photos it will HELP THEM REMEMBER it more clearly.

Relief :-) Nannan can help me make the book! Plus, lets face it, trying to come up with new things to do together is really hard so thats a good way of sharing and joining together etc.

NEW LEARNING - general principles

Even people with moderate dementia can learn new information

It takes a lot of repetition

It helps if the person is actively involed in new learning

keep it simple

Build on what is familiar

Use external memory aids

That last point is a good tip for us and Nannan.

External memory aids?

Diaries / calendars

Notebooks

Post its

Whiteboards

Timers

Alarmed Reminders

Medication Reminders

Extending Key Fobs

Clocks showing date and time

Personal message recorders

motion detecting message reminders

Photo button phones

Sensor lights

Fall detectors

Location Trackers

Door Alarms

Home CCTV systems

I like the idea of having something that Nannan presses that can tell her and answer things like:

What did I do yesterday? What am I meant to be doing today and when?

or 

Where did I put it?

http://www.thedisabledshop.com/category/Alzheimer-Dementia-products/Talking-Cube-Clock

There are lots of Memory Aids on here:

http://www.atdementia.org.uk/

The Remote Control Idea

We have real problems with Nannan not being able to work the remote control. Jeez they are hard enough without dementia these days. But I have decided that what I will try is coloured stickers. There is NO WAY Nannan will ever remember how to use the remote but if i get little coloured stickers and stick them on the bits she needs to press, then on her white board I can write:

RED = POWER ON

BLUE  = SELECT

YELLOW  = VOLUME UP

and so on... ill let you know next week how it goes...

Also remember to get an ALL IN ONE remote. I must tell Mum to do that :-)

Apparently, the course next week covers:

Understanding and coping with new behaviour

Stress on the carer

...amongst other bits Im sure so Ill tell you more then

Al 

@legouix

[alexandralegouixpresenter]

Coping when a loved one has Dementia - what do I say back?

What do you say when a loved one is:

seeing things that aren't there

wanting to do something they USED to do (collect kids from school, drive, go to work)

asking to 'go home' when they are at home

accusing people of things like stealing or hiding things

not recognising close family members

lying

Ok. Well. The hallucinations I have touched on in an earlier blog. Nannan sees a child. One man on Monday said that his partner sees beetles in the bed. there are a few ways of responding to all the above but...

Options for responding?

Correcting (You've got it wrong)

Distracting (Lets move on to something else)

Focus on feelings rather than facts (Im interested, tell me more)

The 'little White Lie'

Correcting (You've got it wrong)

This is the normal response when someone gets their 'facts' wrong.

it can actually work well when someone has very mild dementia but generally it will cause distress, anger or disbelief so you generally need to look for other ways to respond.

Distracting (Lets move on to something else)

Change the subject. Introduce another activity. Go and make you both a cuppa (without asking if they want one haha)

If they are asking for someone who is no longer alive - talk about that person rather than answering the question directly e.g "Where's my Mum?" you could say: "I remember when your Mum did such and such...". Reminisce about that person. they will eventually remember they died without you having to tell them.

Focus on feelings rather than facts (Im interested, tell me more)

This involves talking to the person without challenging their reality. So check out how you think they are feeling first. "I can see that you are excited/angry/stressed/upset" they will put you right if you are wrong.

Get them talking by asking them leading questions. Once in conversation it is often possible to slip into past tense and reminisce. "Do you remember when you met...were at... lived at...".  And if they are like Nannan, they LOVE doing this as they can remember it pretty well. 

The 'little White Lie'

Some people are against this. But i think you have to judge for yourselves. no two dementia sufferers are the same remember so it really is dependent on many factors.

I think it really depends too on who the lie is actually for/helping. I don't think its a good habit to get into either because people can tell when you are lying and so they will just feel distrustful of you.

I tend to use "silly me" or "im like that, i never remember what day it is either" BECAUSE its true! And it also makes Nannan feel like she's not really that different to anyone else.

There is a book I recommend called CONTENDED DEMENTIA. I have only just started reading it... It does push a bit too much of the 'dont ask questions... Neer contradict' idea but in the main it is great. You can get it from here www.contendeddementiatrust.org

Other Ideas

I said in my earlier blog that having - on you all the time - prompts and distractors and a really good idea. But also, think of topics that you know your pal can talk about still or loves... 

Nannan loves:

Birds

Family

Gardening

Flowers

Animals

Scrabble

She USED to love knitting but in her lethargy she no longer seems to like it at all. And there are some other things that she doesnt like/want to do any more... 

Games

I thought that a game I will try tomorrow when I go to see Nannan that could work with the words I have written above... So a category game... 

I saw a woodpecker on the way here... Im rubbish with birds names, what other birds are there?

Can you help me, I want to learn how to plant a Sunflower :-) How do I do that?

I havent got much further to be honest but if you have any other ideas, please tell me haha!

Listed in the N.I.C.E Guidelines under 'treatment for people with dementia' it says that good topics can be 

What's in the News?

trouble is, the news is so often bloody depressing!

Also, i think with the games and stuff you can use your little white lie a bit... so, "I saw a bird on the way, the one that knocks on trees with its beak... i can never remember its name..." "What bird is it that is on the front of Christmas Cards" etc

COPING WITH EVERYDAY MEMORY DIFFICULTIES

What do I do when they are not recognising close family members?

This is when it gets quite painful for people i think.

My name is Alex. My nickname is Boozey. Nannan, over the VERY recent weeks, seems to have forgotten WHO 'Alex' is - yet she knows who 'Boozey' is. And she is definitely really struggling with the other family members who don't see her very often. 

Firstly, DO NOT TAKE THIS PERSONALLY!!

How can we help when this happens?

A good thing to start doing is to make a:

Life Story Book

A snapshot book with words and pictures of key episodes in their life from he beginning through to now and as new events happen, more can be added to the book.

Ill make one and Ill take some photos of it for you!

Suggestions according to the Memory Clinic:

Write it in the first person

Divide it into categories: "This is my family", "I have lived"

Family tree

You could also make a biiiig family tree for the wall with photos by the names.

Memory Book

A few years ago my friend Ema lost someone very dear to her. She said to me, "Al... I WISH I had been able to find out so many things while she was alive and I regret never asking her.. I have found a book that I think you should buy"

I went straight out that day and bought one for Mum, one for Geoffie and one for Nannan!!

The book is called: DEAR GRANDMA (Or Mums is called DEAR MUM :-) and so on)

To my knowledge, Nannan and Mum have written some bits in theirs... i think Geoffie's is sitting in the bedside drawer empty.. but hey.. he's a bloke ;-)

But get them :-) Ill find the link now...

OK and it looks like you can get it from most usual places... heres a link to

some lovely looking books http://www.shopcurious.com/products/give-curious/books-and-stationery/default.aspx?Sort=Brand

More questions

When going through photos and things try NOT to say:

Who is that?

Where was that?

its really not the best way to prompt memory.... instead try:

Oh look wasn't that when you and mum went to France?

Isn't that Hannah and I when we were little?

It sounds basic but I fell into the first trap till i took a step back a bit...

Need another break... Im going to get a cup of tea... Want one? ;-)

Al 

@legouix

[alexandralegouixpresenter]

Understanding dementia course

01189 495 101

07500 974 187

I guess there will probably be a more local one to you but if you can get to Wokingham then this is the one we are going to. Marielle is the lady who takes it and she is amazing

[alexandralegouixpresenter]

Understanding Dementia - Memory and Communication

Hey there guys...

So I have been inspired to write a series of blogs by my Nannan who is suffering with dementia and alzheimers. I won't go into detail again because you can read my earlier posts about it all :-) but having talked to you about what dementia is, and symptoms etc I now want to share with you what I learnt at the Memory Clinic on Monday and share my experiences after putting things into play a bit...

CONVERSATION

Understanding and Speaking - How can you make things easier for them AND yourself?

People with dementia tend to be slower to catch on. They gradually join in less and less and they may well be reluctant to go out at all. They struggle to find the word and they repeat the same story / question again and again. So. HOW are you supposed to deal with this? How should you respond?

Try to avoid asking questions that rely on their recent memory. Obvious questions to us would be "what did you do today?". This puts them under SO much pressure and puts them of the back foot straight away. You must try to remember that they will NOT KNOW! Some sufferers are aware and many are embarrassed that they can't remember so don't know the answer and often will have a one line answer that they have rehearsed. When asked "How are you today?" Nannan ALWAYS replies "ooo you know, can't complain, can't complain". The reality is, she doesn't really know. She can't remember if anything has happened to change this feeling today.

Give more information, fill in the gaps. For example. if I were to say to you "isn't it tragic.. I'm really not sure why she was out at 730pm but apparently it was a tiny little village" you would all know immediately what I am talking about. We all assume people know and remember what has happened recently. Alzheimer suffers will never remember this. So tell them the story first and then keep reminding them during your conversation.

We NEED our short term memory to put what is said into context and make sense of it. So in a conversation give them more information and try to fill in the gaps for them. Remind them of the background of the conversation or subject at the beginning of each sentence or 'paragraph' that you speak. (early days this is still effective and possible) Always use the names of people rather than he/she/they.

Slow down the pace of your conversation. It takes a lot longer to process information. Take time to practice slowing your speech and be comfortable with silence. They WILL appreciate it because they can hear and understand you more easily. 

It is much easier for a sufferer to talk one to one rather than in a group. Just a fact :-)

They cant understand some of the words you are saying? Use easier words... I don't mean treat them like they are simple. They are NOT suddenly stupid! But they cannot cope with LITERAL expressions any more.

We tend to say: "Im whacked", "at the end of the day", "gimma a break", "Im over the moon" and so on. Sufferers will start to struggle with this language. So avoid modern day speak & jargon. They are just more concrete in their thinking.

Often we misuse grammatical structures - so try to use simpler, shorter sentences instead.

WORD DIFFICULTY

Taboo

I mentioned this is one of my last blogs. Its a game that will show you how they are feeling when they are struggling with word difficulty. Its great and really helps.

Memory Aids  are a brilliant tool but don't JUST use a photo. Make sure that under all the photos that they carry, you carry, that are on the wall, in frames in their room etc have the NAMES on them. Who is in the photo, what relation are they, where are they? Any useful facts will be appreciated.

You cant understand what THEY are saying/they cannot remember the words? EVERYONE can communicate. No matter what. So learn what her/his facial expressions are telling you. You can also say something like "Can you show me", "I can tell you are worried about/feeling/thinking..." - They will feel happy they have communicated something to you... Prompt the word if you can guess it - but use this sparingly. Noone enjoys it when other people finish off your...

Ask specific questions... "Is it about such n such?"... "Can you tell me more about it?" "Is it about...?"

And if its really not happening then use "Don't worry it'll come back to you"

This is REALLY working with Nannan AND it make you - carer - feel less stressed that they cannot find the words either. We all feel like it is taboo for us to get irritated, frustrated, angry and so on. IT ISN'T. It is perfectly natural, normal, human. But these sorts of sentences REALLY help take the pressure off yourself too. Don't expect so much from your pal.

HE/SHE KEEPS REPEATING...

Ok, we have all been there with someone who is suffering. Its the biggest frustration for carers. Its so tiring answering the same question over and over again. Don't beat yourself up!

Why? So. The same thought is recurring and they cannot remember having said it before. Often, this is something they are anxious about.

What can you do? Its all about DEFLECTION

Try to steer the conversation elsewhere. Change the subject. Introduce a prompt. this works well - start carrying something on you that you can use as a conversation starter/changer (books, photos, objects)

Sometimes they are anxious about appointments. In fact this seems to be a major thing that worries them from what some of the other carers were saying on Monday. So, try to only inform them of appointments at the last minute and use memory aids when telling them.

Generally you need to try to tune into the feelings (rather than the facts) being expressed and try to respond to these first.

QUESTIONS, QUESTIONS, QUESTIONS

Would you like a cup of tea?

What would you like to drink?

Would you like tea or coffee?

Im having a drink, would you like one?

Im having a cup of tea, would you like one?

I think its time for a cup of tea

Hopefully you can see the progression there and as the dementia increases, you need to move down the question channel!! 

When we ask Nannan if she would like a cup of tea, without fail, she will say "oh are you making one". That starts to drive you crazy after a while. And until now, we havent really considered asking it in a different way to avoid the response. Last night, i said to Nannan: "I am going to go and make us a cup of hot chocolate".. she responded with "ooo lovely". BINGO!

Ok i need to take a break now guys, but Ill write a bit more in a while about distracting and also what you can say when correcting them etc...

Al xx

@legouix

[alexandralegouixpresenter]

Dementia continued & treatments available...

So, I have covered some of the different sorts of Dementia and Alzheimers but there are some more so Ill finish off the information bits before telling you about some good ways of conversing with your pal who is suffering.

Dementia with Lewy Bodies

This is an illness linked with Parkinson's and it effects the entire brain.

The protein deposits found in the brain cells desrupt the brain's normal functioning.

Symptoms?

There are often visual misperceptions where sufferers start seeing things differently and also often very details visual hallucinations. I mentioned that my Nan gets hallucinations too but she has Vascular Alzheimers - so naturally there are some cross overs.

There is generally a big fluctuation is the symptoms from day to day.

People often complain of fainting or falling more.

Frontal-temporal Dementia

This can often occur in younger people (under 65) as well as older

It tends to run in the family

It features personality, behavious and language changes and initially, the memory may stay intact

Help?

So. It took months and months for the Memory Clinic / doctors etc to actually assess Nannan. I can't really judge why but I can say that the effect this had on the family left us (Mum mainly!) feeling angry, unsupported, and hopeless.

But anyway. We can move on because we DO now have support :-)

Memory Clinic

The Memory Clinic assessment is done either in a clinic or at the home and is done by a doctor or a nurse. The 'patient' may also been seen by a psychologist or speech and language therapist too. Information, advice and treatment may be recommended and drugs may be prescribed .

The information gathered during the interview is weighed up and a probably diagnosis is reached.

Should your loved one be told the diagnosis?

I don't know the answer to this. This MUST vary from person to person. What did you do? What do you feel? Let me know your thoughts...

Treatment of Dementia?

As well as lifestyle changes, healthy diet, light exercise, support etc there are some drugs available which can prevent or reduce underlying risks of dementia. They aim to temporarily change the progression/course of the condition and they can alleviate symptoms or consequences of dementia.

The main ones available are called 'Cholinesterase inhibitors'. They are not a cure and there is a around 40% who do not benefit from them.

What can progress the dementia?

Sudden changes... so, trauma and accidents, holidays, bereavements, moving house.

Hope for the future??

Currently over 100 drugs are approaching the latter stages of development for dementia.

Fingers crossed

xx

Useful contacts

Your own doctor

Social Services

Age Concern www.ace.co.uk

Alzheimers Society www.alzheimers.org.uk

Crossroads

www.alz.co.uk

www.helptheaged.org.uk

[alexandralegouixpresenter]

Nannan - success :-)

Hey... So Im going to carry on with the stuff I have learnt from going to the Dementia Course as I have been getting a good response form other carers on twitter (@legouix) but before I do that I did I want to tell you something...

Last night I went to see Nannan in the care home - she is simply there this week while my folks are on holiday. She is finding the change of 'home' pretty stressful understandably... so I sat with her and thought of the new things I had been taught about conversing with sufferers and I really noticed a difference in how the conversation went. Every time she repeated, I distracted. Every time she got anxious, I distracted. I thought about what memories she has and what she would likely be thinking about generally.

I asked Nannan if she could tell me about her time at 'Jacaranda Cottage' - the home she lived in for many, many years and the home I lived in with her for a few years too. She does not remember this house at all. So I thought maybe her memory is pre say, around 25 years ago... So  asked her about the house before that... Larkswood drive... She vaguely remembers the name, but not enough to know anything more about it... I asked her about memories when living in Yeovil and Kenya. She definitely remembers these times but they are fairly vague and not consistent. No. But what she DOES remember really well is her time in the war; her time when she danced in the Music Halls; and her time flirting with boys!! She is too cool for school.

So, i got her talking about those times. And I hit the record button on my phone! And now I get to keep the conversation with me forever :-) 

[alexandralegouixpresenter]

Understanding Dementia & Alzheimer's

What is Dementia?

Dementia is a collective term for a variety of diseases that result in the progressive loss of the powers of the brain.

The Brain 'functions' over lap. Memory, Communication, Emotions, Skill functions and Understanding are all things that the brain does, and each one intertwines and is reliant on the others to be able to function fully.

How it begins

Often very slowly. It can be a gradual decline over months or even years. It is NOT age dependent. If you can, take some time to watch the Louis Theroux Documentary http://www.bbc.co.uk/programmes/b01gvt26 and you will probably be shocked and surprised at how young the onset can start.

One thing I have learnt is that no two people's Dementia is the same. Infact, it has a huge variety of features. It is also rarely noticed by the individual who is suffering - they will usually deny they have any problems whatsoever - and is noticed by others who surround the sufferer first.

How many people have Dementia?

The facts are terrifying. How many people have dementia? Well according to my research:

18 million people in the world

More than 750,000 in the UK - Equiv. to 1.1% of the population

Scientists estimate this will grow to 950,000 by 2021... 1,700,000 by 2051

1 in 20 sufferers are over 65

1 in 5 are over 80

Common symptoms of dementia

Well. The most obvious is the memory loss but this is not all.

It is very easy to forget that a sufferer will have terrible difficulties with learning new information.

They have difficulties in carrying out complex and - as it progresses - simple tasks

They appear to be very clumsy

They struggle to FIND words

Their behaviour changes

I have written FIND in capitals. My next blog will go into this in more details but one thing i didn't realise is this... I thought Nannan just couldn't remember words any more. This isnt the case. This is one of the saddest things AND the hardest things for a sufferer to cope with. They DO KNOW the words. it isnt about forgetting them as such. it is about not being able to locate them. Have you ever played the game TABOO?  If not, you should...

Two players. One holds that card. At the top of the card is a word. Lets say: PORCUPINE. Underneath it are words like: spikes, long nose, rare, trees. Now. You have to get the other person to guess the word Porcupine and you can only use the words below as triggers.

Even I would struggle to think of porcupine. I'd go through various names from hedgehog to squirrel probably before then saying "argh... I KNOW it... i can picture it... What's its bloody name... Grrr... Ummm... Ah yes porcupine?"

Someone with Alzheimers puts words into compartments and their compartments are MUCH more vague and simplistic. The brain puts words that are often used on the top shelf. Words that haven't been used are on a lower shelf. Words that haven't been used for a long time are on the bottom shelf, possibly in a locked container... and where did i put that key again....? And so on.

So someone with dementia is permanently stuck in that 'Tip of the Tongue' stage. We all know that feeling. We all know how irritating it is too when you just can't think of that word. But we all know that the word is in our compartment so we can often relax and say "urgh, it'll come back at some stage". Someone with Dementia is EXACTLY the same! They aren't suddenly a stupid person!! They even know that they KNOW the words they are trying to say, but they cannot get passed the tip of the tongue bit. SO, if you are in a conversation with some one with dementia, who is racking their brains for a word, or a sentence, or a name and they are getting stressed, anxious, worried about it you can put their troubles at ease by reassuring them that "its OK. It'll come back to you at some stage". Even if you now it won't. But again, Ill go into details about diversion tactics, white lies, and things to say in response in my next blog...

I don't want to divert off the track too much so Ill carry on with...

Common symptoms of dementia cont...

Someone with Dementia will struggle to look after themselves / start to have difficulty doing everyday activities. As their thinking becomes less clear things get much harder. They have problems with facial recognition; problems with speaking, understanding, reading and writing; and they often get lost!

Again, ill go into more details but did you know that you can now get a tracking device that you can attach to 'your Nannan' so if she goes off wandering round the garden, street, town... you can always find her :-)

What happens in the brain then?

This is a really good way of thinking about it... Imagine the brain is a bit like the London Underground Map.

There are the different lines = circuits in the brain.... lines off lines = pathways in the brain... linking lines and tube stops = synapses in the brain and the circle line = loops in the brain. There are various forms of dementia, but essentially - like the tube system - if any of these bits fail, the tube system fails. If the stations shut down, if the lines dont run, if the links dont work... eveything starts to dissolve. That's the same as the brain.

Types of Dementia

62% suffer with Alzheimer's

17% suffer with Vascular

10% suffer with both

6% suffer with LB/Parkinsons

2% suffer with FTD

3% suffer with 'other'

Alzheimer's Disease

Was first described in 1907 by Alois Alzherimer.

It plagues and tangles form in the structure in the brain resulting in the death of brain cells

It leads to a major shortage of brain chemicals

It leads to a gradual decline in function which doesn't fluctuate from day to day

Vascular Dementia

This is slightly different inside the brain. It is where the actual blood vessel are damaged. oxygen cannot reach parts of the brain which leads to death of the cells. The symptoms can occur either suddenly after a stroke, or over time through series of small strokes.

The symptoms?

The sufferer will:

Fluctuate from day to day

Have a stepwise progression

Show symptoms of a stroke

Have language difficulties at an early stage

Have difficulties with organisation and planning

Have depression

have sudden episodes of confusion at times

have hallucinations / delusions

My Nannan has Vascular Alzheimers. She suffers from all of the above. Sometimes I go in to her and she is 'on it' for a few minutes. It is great. She seems to be fully in the room. Then suddenly she starts repeating things and you can see a major decline before you eyes.

Hallucinations

Nannan also suffers from hallucinations. To lighten the mood here, I secretly am pleased to discover that the little girl that Nannan can see in her room - the girl she chats to - is NOT a new ghostly resident at Mums, but one of Nannans hallucinations.

It is important to also tell you, that if your loved one has similar hallucinations you SHOULDN'T quash them or tell them they are not there. No matter what it is. It would be like me telling you that your computer (of whatever you are reading this on) isn't in front of you ISN'T there and you are making it up. It would be extremely stressful and upsetting because you KNOW it is. There is NO point in doing that to someone.

If they are bad hallucinations, then tell them you will get rid of it/them. ie: someone yesterday told us that his wife (50 YEARS OF AGE :-() often seens hundreds of beetles in the bed when he pulls open the covers. She KNOWS they are there (in her head). He has discovered that if he swipes his arm across the bed  and tells her that he is getting rid of them, she will accept this. At the start he told her they didn't exist and that would make her go crazy - as I am sure you could understand.

Nannan is often heard laughing when she talks to the girl. We dont know anything about her. But if she makes Nannan laugh, she can stay as far as I am concerned :-)

I need to go now... but Ill carry on later on... I hope this is a useful start for you all

Useful Links

www.alzheimers.org.uk

www.helpforalzheimersfamilies.com

www.alz.co.uk/caring-for-a-person-with-dementia

www.dementiaweb.org.uk

www.ageuk.org.uk

[alexandralegouixpresenter]

Coping when a loved one has Dementia.

Hey guys

So. My Nan has been living at my Mums for almost three years now. Originally it was meant to be a 'stop gap' until a suitable flat came up for her, but the 'stop gap' has turned in to 3 years... you know how it goes.

'Nannan' rocks. I am so, so close to her. When my parents divorced I lived with her for many of my growing up years and I have lots of incredible, fond memories of our time together... skipping to school doing the 'times tables' (i'm a pro up to 6, then Im not sure even she knew 7,8,9 so i never really learnt these very well); eating the cake mixture before we were meant to; pretending we weren't at home when someone knocked (random looking back I realise); and generally just hanging out together laughing. It sounds like some dreamy, cheesy story but its true! I genuinely remember doing a LOT of laughing with her.

Nannan has always been someone I could turn to. No matter what was going on in my life, no matter how tough things were getting for me, no matter what anyone else thought about my actions, Nannan has ALWAYS stood by me and ALWAYS given me amazing advice. She really came up trumps a couple of years ago when I really needed help. I expected her to tell me something else because of her age and her values but she didn't .. she simply said: "Just follow your heart Boozey. You will make the right decision, you always do, and I will support you no matter what you choose!". You have no idea how much I needed to hear that and what that meant to me.

Over the last few years, things have changed a lot. Two weeks ago, Nannan was diagnosed with Dementia and 50% Alzheimers. We knew this already. Well, we knew she probably had Alzheimers but we didn't know to what extent; we didn't know how bad her Dementia was; and we didn't know what any of it meant either.

What I can tell you - if you aren't dealing with it on a day to day basis, or if you haven't - is that generally, it is awful and extremely sad. I say generally, because it isn't an all consuming thing for me. NOT because I don't care. But because, well, you just get on with things don't you. You make a joke of it sometimes, if anything. This is not meant to sound terrible. It is completely natural. If you didn't laugh at some of the things Nannan did or said or REPEATED ( :-) ) then you would either go mad yourself, or you would fall to pieces with how upsetting it is to see the person you love just disappear in front of you.

That is not to say it is easy. It isn't at all. It is far easier when you are a little bit removed too. I am only at my Mums, say, 1/2 nights a week. My Mum is there, of course, all the time. She deals with it all day, every day and when you are a full time carer for the person who - effectively -  is meant to care for you, it's really, bloody hard and tragically sad ALL of the time.

Something had to change. We hunted the internet and eventually Mum found this incredible course to go on. The course is designed to help her truly understand what dementia is; what it means for the family; what we can do to deal with it; what we can do to make Nannan feel as comfortable as possible.  And there are 29 other people on the course and THAT support, I think Mum will find, is invaluable. 29 other people who TRULY understand what she is dealing with. As Mum put it... "It's amazing... it's like having 29 hugs from people who really understand how I'm feeling... that is what I have really needed".

Also, what Mum has really needed was a break. Away from everything. A time to recharge her batteries. And after much deliberation, conversation, confusion, forgetting, remembering, organising, deciding and packing: Mum and Geoffie took off for a week to Turkey yesterday morning; my Aunty took Nannan in to a care home; and I came to look after the house and the menagerie of high maintenance animals!

Yesterday afternoon I went to Week Two of The Dementia Course at the Wokingham Hospital. I came out inspired of all the things I could do and say to Nannan to make things a little better for her. I understood more about what is going on in her brain. I understood many new things. I went straight to see Nannan at the care home to put my new knowledge into play. And although she was dreadfully anxious; very confused as to where she was; and very forgetful - I noticed that it DID help both her and me to know what to say, when, and how.

So. Seeing as I am going to write up the notes for my Mum, I thought, why don't I write a blog about it all then hopefully I can pass on useful information to everyone else out there who is dealing with similar problems. One thing we have really been aware of is that unless you ask for help, NOONE helps.

Noone tells you that the pharmacy can make 'Nomad/Blister' Packs up, so that when you pick up the 15 p/day x 3 months worth of pills -  instead of having to divvy them all out into morning, midday, after lunch, and night sections yourself - the pharmacy will do it all for you so they are sealed and ready just to be punched out.

Noone tells you that there are watches available specifically for people with Alzheimers that when you touch them, they will speak the words, loudly and clearly "It is XX Day, XX Month, XX Year".

And - despite taking Nannan to the doctors and asking for help, and asking for carers, and asking for financial aid and getting none because they say "lets just see how she is in 3 months time then we will do a Memory Test (by which time she is 3 long months MUCH worse)" - noone tells you that there are brilliant websites, brilliant courses and much needed support groups that will help you.

So. I hope that my next few blogs DO help you.