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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.

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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!

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!

Dementia and walking

17 May

 

Dementia and walking

 

There are some people who have dementia who go out walking, can’t remember their way home and end up getting lost.  The purpose of dementia friendly communities is to support someone who might appear in distress, if they are seen in the community, to have compassion for someone with a dementia, but they might not appear in distress.

 

People walk because they always have or because they have a purpose, even if we don’t understand what that purpose is.  I’ve had clients that broke out of care home, breaking through doors to do so, because they had to go somewhere or be somewhere that was incredibly important to them, such as going to work, church or school. They might think that they are looking for something or someone.  Whatever their reason, however inexplicable to the people around them, it makes sense to them.

 

The person might get lost on their way to the place they are going or get lost on the way back.  This can generate a significant response for the authorities that are tasked with finding lost people, such as the Police or Search and Rescue, who do an outstanding job in difficult circumstances.  See the Police’s Herbert Protocol: https://www.met.police.uk/herbertprotocol

 

It can be challenging to communicate with people with a dementia, so it is difficult for them to explain what they are doing and why and it therefore becomes harder to help them by the people around them.  It is worthwhile taking some time to understand their reality, which might be being expressed in their facial expressions, or body language as well as through their verbal communication, which might be confused.

 

People with dementia are still people, they have human rights like everyone else and should not be treated as lacking their rights.  They might need support and care but this should be provided with their rights in mind, so as not to try to restrict them, but to enable them to walk as safely as possible.

 

They can have a GPS tracker placed on them, if it is in their best interests to wear one and they can be covert, again, if it is in their best interests to wear one.  There are some trackers that are insoles, so as long as the person is wearing their shoes, they will be wearing their tracker and can therefore easily and quickly be found, which is very relevant in extremes of weather, both hot and cold.  They should not be tracked oppressively, as they are still entitled to their freedom and only when their life is at risk, should they be tracked.

 

Walking is difficult for those around the person with dementia to manage, if they do it a lot, they will need to be appropriately supported, with everything that they might need, such as appropriate footwear and clothing, contact details in their pocket, snacks and water.  It is a tough role being a carer and they are amazing at it!

Dementia and domestic violence

3 May

 

Dementia and domestic violence

 

I have had a number of clients who have had issues with domestic violence, when there is a dementia involved.  It is a very difficult situation, as there is not the “usual victim and perpetrator”. It often arises because the person with dementia lacks insight into their condition and the carer doesn’t fully understand the condition or has carer burn out or it just isn’t what they thought would happen when they got together as a couple.

 

So what can be done?

 

Firstly, make sure that the person with dementia has had the appropriate referral to the GP to make sure that they have a formal diagnosis and access to any treatment that is available.  The dementia cannot be cured, but there are some treatments available for some types of dementia.  The diagnosis also gives that person access to certain activities, which may also help the situation.

 

The carer will also need support, as many carers are clinically depressed within a year of diagnosis, they live with an underlying level of stress, which can very easily escalate when an acute episode happens.  The person with dementia and their carer should ensure that they have had a referral to social services to ensure that they each have an assessment of their needs.

 

There should be a conversation with each of the parties to try to alleviate some or all of the fundamental issues that give rise to the domestic violence and to try to get each party to understand their situation, as far as is possible.  This can involve a very careful and sometimes skilled conversation with the person with dementia to try to interpret and understand their situation and their understanding of their situation.

 

Both parties need a plan for safety and it is likely that the carer will be the person responsible for the instigation of both plans, which continues to put a lot of pressure on the carer.  The clients I have are concerned for their safety and that of their loved one, so want a prompt response in the safety plan.  This puts pressure on local services, which need a process to respond to this situation, which is different from a “usual process”.

 

This is a safeguarding issue, which is the responsibility of the Local Authority, to ensure that the person or people are kept safe.  The plan could include lots of different strategies, which include diversion for one or both parties, medical input or in a serious case of harm, could include sectioning a person.  And in some circumstances, for married couples it might include divorce, which might not be what they had intended in regards to their caring role, but if one of both parties continues to be in serious danger, it might be the least worst outcome!

 

The most important thing is to ask for help and not suffer alone in the home, as there is help that can be provided by all the services that are there to support people to live as successfully as they can in the community.

Adjusting to life as a carer

19 Apr

 

Adjusting to life as a carer

 

When you are a carer for a loved one, either spouse or parent, there is a period of time to adjust to the new role.  If you are caring for a parent, it appears to be a switch in roles, they cared for you and now you care for them.  Your life is now changed.

 

This takes time to mentally adjust to the new situation and there is a grieving in doing so, as you have lost what you have before.  However this grieving is very challenging, as it seems strange to grieve for someone who is still alive!  Many carers are clinically depressed with the struggle of the change, the new role and the thanklessness of the situation, particularly if it is a deteriorating situation.

 

It takes time to adjust, to make changes in your life, to find the time that you used to do something else, to then use as a carer.  And everyone in your immediate family has to adjust to that as well.

 

If you are working, then you can discuss any changes you might need to make with your employer.  If you don’t want them to know, there is no requirement for your to tell them, but you will have to if you want them to make adjustments for you.

 

It takes a huge amount of mental energy to be a carer, which is disproportionate to the amount of time it takes to provide the hands on support of visiting and dealing with whatever needs sorting out.

 

It might also mean that you have to give up something that you did before, at least for a while or change it.  When I was a carer, I made the decision not to go on long haul flights, it was just too far to get back, if there was a problem.  And I didn’t go away short haul very much!

 

I hear a lot of comments about how stressful it is to be a carer and about how people are able to cope.  People find ways to cope and it is useful to be mindful of your stress levels and find something that will allow you to deal with your stress, be kind to yourself.  Having good mental health is one of the most important attributes of being a carer.

 

There is a lot of pressure on you, as a huge amount of the cost of care is undertaken by unpaid carers, so the health and social care systems are set up to take account of the support that people are given.  It become something that appears expected, rather than treated with gratitude, as the generous gift of time and energy that it is.

 

The truth is, people get ill, people die, it’s not something families like to face, but nevertheless, it is true.   If as a carer, you have turned up and done your best, then that is all you can do.  You have done a good job and should be congratulated.

Going to hospital with a loved one

5 Apr

 

Going to hospital with a loved one

 

There is that horrible phone call, from the police or paramedics that lets you know that something terrible has happened.  It’s almost always at an inconvenient time and they want you to drop what you’re doing and head off to the hospital or come to where they are, if you are near enough.

 

If the matter is a life and death emergency, then you will be advised to meet them there and they will be blue lighted to the hospital or possibly even by helicopter.  If not the ambulance will make its way to the hospital and you can meet them there.

 

Depending on where you are in relation to your relative and the hospital, if you arrive before them, then the emergency department administrators will know they are on the way and will be able to give you an approximate time of arrival.

 

There is a four hour target of arriving at A&E and being discharged from there, either home or into the hospital, possible to a medical assessment ward (MAU).  This four hours does not start to run, until the paramedics have handed them over and there can be a queue for that, which can take up to an hour or even more.  Therefore the expectation that this will be done within 4 hours of the ambulance pulling up at the hospital doesn’t necessarily take this extra time into account.  So when you get to the hospital and pass by a place that sells food and drink, buy some, you could be waiting a long time and might need sustenance.  Make sure that you have a book or your phone is fully charged, as the waiting may be boring and you might need something to occupy you.

 

There are periods of activity and a lot of waiting as the staff undertake their investigations, they undertake a lot of their work with you nearby, but not there for reasons of access and dignity.

 

The area can be very busy, depending on what time of day and what day of the week, late on a Saturday night is not a great time for an elderly relative to have a fall!  The staff are busy and are trying hard to do their jobs effectively in a challenging environment and many retain great empathy skills even when under immense pressure.

 

If you have a power of attorney for health and welfare and your relatives has issues with their mental capacity, then it is worthwhile ensuring that you have a copy of it available, if possible.  If you’re loved one lacks capacity to make a decision, then you make it for them, so you will need to let the staff know that you have it, to ensure that any decisions that need to be made are done so, having discussed them with you and asked for your final decision.

 

If there is no power of attorney for health and welfare, then they should still discuss the situation with you and ask what your loved one would want, however the final decision as to what to do is the healthcare professionals and they are required to make a decision in that person’s best interests.

 

When someone you love is poorly, it is always a distressing time, watching them ill and/or in pain.  You are there and you are trying your best, that’s all you can do, so be kind to yourself about how stressful this situation is.

 

My key suggestions therefore are:

Be prepared for a long wait.

Get some food and something to drink during that wait.

Bring your health and welfare lasting power of attorney.

Be patient and respectful to the staff.

Be kind to yourself with how upset you might feel.