How to communicate with someone who has a cognitive impairment – Part 5

9 Aug

 

How to communicate with someone who has a cognitive impairment – Part 5

 

I would again like to thank Kate Smith from Memory Matters some of the information for this blog.

 

It is important to remember that no two people with a cognitive impairment will communicate or present in the same way, but here are some more ideas that will hopefully help.

 

People with dementia are often very good at reading body language and at interpreting tone of voice, even when fairly confused.  It is more respectful therefore to tell the truth, rather than challenge their view of reality.  If the person with dementia is awake and wandering about in the middle of the night because they believe it is day time, rather than tell them they are wrong, it is better to suggest that they go to bed and if they don’t want to, then sit and chat about the weather or distract them in some other way and later suggest they go to bed.  It is far less confrontational than telling them that they have made a mistake about time and they should go to bed, it can lead to them feeling shame for getting something wrong!

 

When you are with a person with dementia and their carer, it is best to talk to the person with dementia and not their carer if that is possible and if talking about them, ask permission to talk to the carer.  It can just make them feel uncomfortable if they are being talked over rather than to.

 

People with dementia don’t like to be tested about things, the rest of us don’t go through our lives being tested, so they might not want to answer questions if a lot of them are being asked at once.  So make the person feel comfortable and if you need information, see if you can get it in a more conversational way, instead of lots of questioning.

 

If at all possible, it is better not to say “don’t!  As soon as anyone is told “don’t do that” or “you can’t”, people do exactly what they have been told not to, it is human nature!  It is much better to redirect to something else and only at the point their life is at risk should they be directly challenged, if not, then they can be distracted instead, it is a much nicer way to behave towards people with dementia.

 

Everyone is different, not everything that I have discussed in this series of blogs is relevant to everyone, but hopefully it will be helpful, if you ever meet someone with a dementia.

 

It is also important to remember that the skills that relate to dementia are transferrable to other disabilities and situations.

 

Be calm, be happy, smile and this will have an impact on the person with dementia, this will be perceived by the person with dementia and they will appreciate that you are a safe person for them to be around.

 

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The withdrawal of food and fluid – the right to die – a new Supreme Court case

2 Aug

The withdrawal of food and fluid – the right to die

 

There was an important case this week in the Supreme Court, which is the highest Court in the UK regarding the withdrawal of food and fluid for some people.  This is changing the way that these matters are going to be dealt with in the future.

 

The first case of this kind was the sad case of Anthony Bland in 1993, he was a survivor of the Hillsborough disaster and was in a vegetative state, from which there was no chance of recovery, but as he was otherwise a fit young man at the time of the incident, he could have continued to live for years.  He had even undergone surgery without the need for anaesthetic, as he was brain dead and did not feel pain.  The case decided that it was in his interests to stop his food and fluid, so that ultimately, he would die, which is what happened.

 

Since then all other cases of minimally conscious patients go to the Court of Protection for a decision and each case is decided on its own merits.   Every case is expensive both in money terms, but also for the distress that the hearings cause to the loved ones, in part because of listening to the medical detail and in part with the anticipation and unknown nature of litigation.

 

So what did the Supreme Court decide?  In future all patients who are in either minimally conscious states or vegetative states can have food and fluid removed without the need to apply to the Court for an individual decision as long as both the family and the health authority agree that this is in the persons best interests.  If there is any disagreement, then this case is not relevant and also if the person is not clinically in one of the relevant coma like states.  If the criteria are fulfilled, then the person can be allowed to die following the withdrawal of food and fluid.  Their death will be managed to ensure that they are not in pain or suffering in any way.

 

There are estimates that at any one time in the UK there are about 3,000 people that this case might be relevant to.  The Court of Protection deals with around 1,500 new cases each year, with a legal cost of £50,000 to the health authority in each case, that £75m per year that the NHS can spend on something else, as well as end the distress to the families that the litigation causes.

 

There will still be cases that the Court has to decide on, those that do not fulfil the criteria of this case, in particular, when the family disagree.  This is not a case of assisted suicide, as without this artificial support these people would not survive, the only reason they are alive is the medical intervention that keeps that so, but there will be no doubt arguments that it is a case of assisted dying.  With no chance of recovery and no quality of life, I endorse the decision by the Court to make the situation easier for all involved, however heart wrenching that decision might be.

 

How to communicate with someone who has a cognitive impairment – Part 4

26 Jul

 

How to communicate with someone who has a cognitive impairment – Part 4

 

I would again like to thank Kate Smith from Memory Matters some of the information for this blog.

 

It is important to remember that no two people with a cognitive impairment will communicate or present in the same way, but here are some more ideas that will hopefully help.

 

People with dementia can have difficulties in planning, putting the plan into action is called sequencing.  The often-discussed task is making a cup of tea, there are lots of different stages to this task, which we take for granted and if we get some of them in the wrong order, we do not have tea.  So for example, if we pour the water on the tea bag and then boil the kettle, we have a wet tea bag, but no tea.  People with dementia can also have problems with other everyday tasks and this includes talking about those tasks.  A difficulty planning is around the abstract thought process, I once had a client who held out her hand to me with a 50p in the middle of her hand and she asked me “is this 50p worth a pound?”!  She was able to identify the piece of metal in her hand, but did not understand its abstract value and therefore how it worked.

 

People with dementia can have problems with spacial perception, they will struggle to understand what is close to them or the distance between things, which can impact on how they talk about things.  This will also clearly have an impact on how they move about, which will also have an effect on how people treat them (if they look drunk, they might be treated as drunk!).

 

People hold maps in their head of their environment, so if there is a problem with the map, people can have difficulty finding their way around, except in the most familiar of places.  People with dementia who have difficulty finding their way around can begin to go out less or not at all, if they are alone, which can lead them to become isolated and lonely.  If they don’t go out, they might need a companion, they need someone they trust and feel safe with and they will happily leave their known environment.  When asked about places, they can get confused or muddled and mix places up or have trouble talking about them.

 

When talking to someone with a dementia, it is more respectful to accept their understanding of their world than correct them, unless it is not possible to do that.  So when someone in their 90s talks about their parents as though they are still alive, unless there is a risk to their life, it is better for that person with dementia to also talk about their parents as though they were living.  I had a client once whose husband had passed away and she thought he was having an affair and that was why he hadn’t visited, even though she had been told and had attended the funeral, she just couldn’t retain that information.  So her family told her lots of different things, but not that he had died, as she just got upset each time, as she re-grieved for him.  The family said that he had a cold and didn’t want to pass it on, that he would come next week or that he had come a few days ago and due to her confusion, she accepted all of these excuses and wasn’t upset at either his death or perceived affair!

 

When talking to someone with a dementia, if you do nothing else, but the kind, safe, smiling person.

 

How to communicate with someone who has a cognitive impairment – Part 3

12 Jul

 

How to communicate with someone who has a cognitive impairment – Part 3

 

I would again like to thank Kate Smith from Memory Matters some of the information for this blog.

 

It is still important to note that no two people with a cognitive impairment will communicate or behave in the same way, but here are some more ideas that will hopefully help.

 

People with dementia can have problems initiating something, they just can’t seem to get started.  A couple of years ago, I went on a dementia experience, when I had my hearing, vision and sensitivity affected by various pieces of equipment and was then told to do three things all at once, none of which I could hear properly.  It was an information overload at a time when I had impaired senses and it became too much for me.  I just sat down in the chair in the corner and waited for someone to come and tell me what to do next, as I had no idea what I was meant to do!  This is apparently a common thing that people with dementia do, when they don’t know what to do.  So, I sat waiting patiently and watched what was going on, as best as I could see.  People with dementia might need help to get things started, as they might not know how to in that moment.

 

The next issue that they may have is called perseveration and this is when they do get started they cannot stop.  I have had a few clients that walk, all the time in a care home.  They cannot even sit down to have a meal for any length of time and often have food that they can carry with them and eat on the go.  Even going to the loo can be challenging for these people that walk a lot, as they have trouble sitting for any length of time, which might not be the same time frame that they eliminate in!  It can be repetition of any action though, including moving their hands, feet or arms in the manner that they did for work years ago, if their work tasks were repetitive.

 

People with dementia can become bewildered with choices, so keeping the choices down to very simple ones can help.  Instead of asking if they want beef, chicken or fish for dinner, just start off my asking if they want beef, yes or no and if the answer is no, ask about chicken etc.  In this circumstance it is useful to know what their general preference is, so as to ask them about what is likely to be a positive choice for them first.  The person talking to them should keep the language simple, to ensure that they are as empowered as possible to make as many decisions for themselves as is possible.

 

People with dementia can have problems making good decisions, as they can have an impaired judgement.  When faced with the choice about going into care, often they say that they don’t want to and believe that they are caring well for themselves, but are remembering a time in the past when that was true, which then affects their ability to make a good decision now.  There are lots of different reasons for impaired judgement, this is just one example, however the person’s judgement might be impaired, so they might need support to make decisions.  It is important not to interfere with an unwise decision, as people with dementia are allowed to make unwise decisions, like we call do from time to time.  Impaired judgement is about exactly that, rather than about imposing on the person a different choice their loved one or family would rather they made.

 

The ability to make an unwise decisions is one of the five principles of the Mental Capacity Act 2005.  The issue about protecting them from an unwise choice is around their right to life, when a decision is so unwise it puts their life at risk, then their other rights can be overreached, such as the right to a private and family life or the right to free association.

 

If nothing else, but the kind, safe smiling individual for the person with dementia.

How to communicate with someone who has a cognitive impairment – Part 2

28 Jun

 

How to communicate with someone who has a cognitive impairment – Part 2

 

I would again like to thank Kate Smith from Memory Matters some of the information for this blog.

 

It is still important to note that no two people with a cognitive impairment will communicate in the same way, but here are some more ideas that will hopefully help.

 

People with dementia can retain some motor skills that those around might have thought that they had lost.  In general, people lose their fine motor skills, so their dexterity becomes impaired for wide-ranging things, however they still might retain muscle memory for something that they did a lot when they were younger, which is why people can play the piano, even if they have trouble getting dressed and doing up buttons for example!  This can be helpful with doll therapy and pet therapy, as the person with dementia is used to rocking a baby or stroking a pet.  The moments are familiar to them and feel safe, so they will relax.

 

One third of our brain relates to processing visual information, so if this part of the brain is damaged, then the person will have difficulty in some way process or misunderstanding what they see.  This can lead to what appears to be difficulty in walking, if for example they perceive lines in carpet as snakes on the floor or dark carpet / mats as holes, which they need to step over.  They might also have difficulty in recognising people visually, so a prompt, such as giving your name and relationship is helpful.

 

The person with dementia can lose insight into not just their condition, but lots of other things to.  They might act in a way that is considered socially inappropriate, such as greeting everyone like they are your best friend or spouse.  They might hold hands with someone, as it is comforting to them, without the insight into what is socially acceptable, they are behaving in a way that they want and is helpful or comforting to them.  In general, unless completely inappropriate, then it is easier for them if the people around them go along.  I have had clients who have hugged and kissed me like I was their child and have always appreciated that it was a lovely, warm and kind way to greet me!  It is nice to be liked!

 

Communication is relevant both ways, communication to tell someone something and communication when someone is telling you something.  The loss of the ability to communicate can be in both directions, but it could be worse in one than in the other.  People can have word finding difficulties, which can be frustrating, as they know that they know what they want to say, but have trouble remembering the specific word, so “pork” could become “bacon” or “pig” instead or they might use gestures to try to explain themselves.

 

Receptive language is about someone’s ability to understand what is being said to them and if this fluctuates the person can be thought of as having selective hearing!  It might simply be that their ability to understands fluctuates, like the rest of their presentation.  So, the person might need the carer to use simple language or different language.  They might need to use gestures or other nonverbal communication, anything that involves touching the person with dementia should be appropriate, usually touching their hand is considered appropriate, but what that is, depends on the perception of the person with dementia.

 

What is important is that the person with dementia feels safe with you, if nothing else, be the smiling safe person!

Gosport War Memorial Hospital

21 Jun

 

Gosport War Memorial Hospital

 

I work with elderly clients and their families, they are amazing people who have lived full and interesting lives and I struggle to understand how anyone could treat these amazing people unethically.  They are fabulous human beings!

 

After Harold Shipman was convicted in 2000, it is shocking that the Police did not reconsider the various complaints that had been made in earlier years. It was after Dr Shipman was convicted that a mass complaint by 90 families was made in 2000 and although investigated, no charges were brought.  This is one of those situations where the well-used phrase “never again” can be appropriately understood!

 

Opioids are used at major traumas to immediately relieve pain, such as car accidents and at painful end of life.  In the case of major trauma, the purpose is to relieve pain, whilst the process of recovery from the injury can be assessed and undertaken, such as surgery, after which a detailed pain assessment should be undertaken to ensure that appropriate pain relief is provided, with consideration given to the side effects of the proposed medication/s.  It is not intended for long term use, except in carefully controlled circumstances, due to the side effects.

 

As far as end of life situations, the clinical purpose is to ensure that the person dies pain free and it is known to have an effect on breathing and that this side effect is likely to shorten life, however not prescribing it will ensure that a dying person experiences excruciating pain.  Opioids is considered the least worse option, for obvious reasons since death is both close and inevitable!  I have first hand seen the effects of opioid end of life care and although the difficulty in breathing is challenging to both experience and watch, it is still clinically considered a better option.

 

When pain relief is constantly given, then often a tolerance is experienced, so the pain can seem to be worse.  There are pain clinics to help manage this in the NHS and many alternative therapies that can assist with pain, such as Bowen Therapy (a mind and body therapy), which I can first hand vouch for and can seem like magic in its effectiveness!  Other non-pharmaceutical therapies are available.

 

I want to express my concern over the Police response in 2000 and pass my best wishes to the families of the victims for the follow-on outcome from this report that will give them peace, whatever that may be.

 

And add my voice to the sentiment.  #NeverAgain

How to communicate with someone who has a cognitive impairment

14 Jun

 

How to communicate with someone who has a cognitive impairment

 

Firstly I would like to thank Kate Smith from Memory Matters some of the information for this blog.

 

No two people with a cognitive impairment will communicate in the same way, but here are some ideas that might help.

 

Memory can be unpredictable, however in general short-term memory tends to be lost first and long-term memory stays with that person for a longer period of time.  However, if something emotional or very unpredictable happens during what is otherwise a mundane situation, such as a huge surprise happening during breakfast, then the details about what you ate and drank for breakfast will stay with you longer than other breakfasts.  This surprise / emotional memory works like long term memory and can be retained.  What is important or emotional to one person, won’t be the same for another, which is why it can therefore be unpredictable what will be remembered.

 

People with dementia can have difficulty focussing, which can relate to their inability to filter their environment.  People without this impairment can focus and concentrate on the thing that they consider important and may not even hear people close by talking to them, if their focus is so strongly fixed on the task in hand, but people with dementia don’t always have this high level of concentration, so if there are multiple things going on in their environment, they might struggle to concentrate on any one of them.  This can also be a useful thing, if they become agitated or anxious, as the carer can do something that will distract their attention from what / why they are anxious and change their mood really quickly, such as dropping keys on the floor to create a sudden noise.

 

The areas of the brain that are affected by dementia are different in each person and if the frontal lobe is damaged, this can lead to issues with both planning and impulse control.  The family members of people who have issues with impulse control will be surprised by comments or swear words that can be used, that were never used before.  The filter that ensured that their interactions were social appropriate and measured has disappeared and they will both act quickly and out of character for them as they were before.  They might become more angry or tearful for example, the display of their emotions is unpredictable.

 

Another aspect of the loss of impulse control is the loss of ability to plan or manage their lives.  If they are thirsty at 10.30am, they might not be able to wait until 11am for their morning coffee, or plan a loo visit etc, so when they realised that they need / want something, they want it now!  They might ask for what they want and will have difficulty concentrating until they get it or they might get up and walk off to get it, which could be mid conversation!

 

Unless the environment is very familiar, that they continue to see / use daily, they could be disorientated, including to parts of their own house they don’t go in regularly, such as the spare room or family members that they don’t see regularly because either they don’t visit or live a long way away.  As far as people are concerned, everyone has a name, relationship and visual look and it is possible that they can forget one or more of these aspects, so they might know you are familiar, but not your name or what relationship you are.  This can create issues of inappropriate behaviour if the person thinks you are someone else, particularly when sons are misunderstood for husbands or daughters for wives!

 

What is important is that they feel safe with you, not the information about you that they can remember or not!