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As promised, here are some of Stacey’s facts and tips on Dementia – We hope that this relatively small amount of information will help people better understand this terrible disease and also provide some good advice on caring for someone who has Dementia, be that now or in the future. Sadly, very few of us will make it through our lives without having to do so.

“Dementia” is umbrella term. There are actually over 100 types of Dementia with Alzheimer’s being the number one cause. Many people think that Dementia is part and parcel of old age but in fact people of any age can be diagnosed, even children.

One of the first signs of Dementia is memory loss, especially short-term memory. We all forget things on occasion, especially as 21st Century living requires us to hold so many different things in our heads at one time! However, look out for the people you love – if someone starts to tell you something they told you earlier, don’t be tempted to stop them with a “You’ve already told me this”. Listen to see how far through it they get before they remember themselves. Also, you could pretend you’re playing a game whereby you pick up random objects (TV remote, coffee cup, mobile phone etc…) and see how quickly someone can say the name of it. Often with Dementia, people start to lose the connection between what they are looking at and what immediately comes to mind. These are just two very simple things you can do to give you some of the first clues.

Our brains are made up of millions of cells. In order for us to do anything, like move, smell, see, swallow and hear, we send smooth signals across many brain cells at a time. Because Dementia destroys brain cells, people who have it get a jump in these signals which corrupts the messages.  They lose short term memory and later, long term memory – eventually they will see, touch, smell, feel and hear things that are not there.

People with Dementia often find it hard to complete everyday tasks that are so familiar we usually do not think about how to do them. For example, they may have difficulties making a cup of tea or putting their clothes on in the right order – on this point, they may well start putting items of clothing on in the wrong place! My grandad used to frequently put his pants on his head which we as a family thought quite sweet and a little funny (!) but I do remember us saying “No, they are your pants, we don’t put our pants on our head” which confused him greatly and made him very frustrated. If I had him back today, I would say, “Oh that’s a nice hat grandad, but that’s Thursday’s hat, it’s Wednesday today” and with that, I would simply give him his cap to replace them with, and all would be calm.

A very good tip on caring for someone who has Dementia is not to consistently do things for them. If for example they are struggling to make a cup of tea, help them make it rather than leave them to sit in a chair while you make it. It is important for them to try and stay active where possible, and mental stimulation, even the process of making a cup of tea, is far better than sitting alone and staring out of a window.

Dementia will always end up in an end-of-life care situation. From diagnosis to death people generally have between 7 and 13 years (the average being 10). This is mainly because, in late-stage dementia, people not only forget to eat, they forget how to eat and swallow. Therefore, it is not at all uncommon for someone in their late stage to have to be drip fed. Many people with dementia however, who may have had a bad fall, contracted pneumonia, developed severe constipation, or many of the other complications that often accompany this disease do not make it to this very last stage.

If your loved one talks about someone who has since died, PLEASE talk to them about that person rather than remind them they are no longer here. They don’t remember that they have died, so every time you tell them it will be like hearing it for the first time. This is horribly distressing news! So, for example, you’re sitting with Aunty Sarah and she says she has to get up and make Tom’s tea (Tom her husband of 50 years that is, who died 3 years ago that is). Ask her about Tom. Ask her to tell you about their wedding day, or about the holidays they went on. Anything but constantly remind her that he’s no longer here. In late-stage Dementia, the same thought comes back in to the brain every 6 minutes, so undoubtedly, you’ll be having this same conversation again pretty soon! Frustrating as this may feel at times, the very best way to communicate with and care for someone with Dementia is to try and ‘live’ in their heads, not yours.

Similarly, if someone doesn’t recognise you as being the person you actually are to them (for example, you are their son and they think you’re their brother) please try to be that person for them. This is extremely difficult and upsetting for you, of course, but imagine walking in to work and someone saying, “Hey! How’s mum?” then insisting you are their sibling – THEN the whole team continuously insists you are their sibling and asks what on earth is wrong with you?? This would go from being pretty funny, to actually quite disturbing…

As I’ve mentioned before, Dementia can be diagnosed at almost any age – this is why it’s so important to look out for one another, so we stand a better chance of getting an early diagnosis which is absolutely crucial. So, here’s some of the things it would be a good idea to watch out for:

Forgetting about recent conversations or events and people repeating themselves. Sometimes we all repeat ourselves, or indeed we might go upstairs and suddenly forget why we went (If you’re like me you’ll sometimes gaze in to the fridge for no apparently reason too…). Please don’t be overly alarmed if this happens to you on occasion as this is often just part and parcel of 21st Century living! It’s actually quite hard for us with all that is constantly going on in our minds to keep track of everything all the time, i.e. we need to get back to someone/send an email/put the bins out/feed the dog/update Facebook etc…etc… So it’s not uncommon for our minds to suddenly get overwhelmed! However, in the early onset of dementia, people will forget recent conversations and events and repeat themselves more and more frequently. Try not to stop someone who is telling you the same story that they told you just recently – we tend to immediately say “You’ve told me this already!” – listen to them and see how long it takes for them to realise they have told you, if indeed they do.

People can become slower at grasping new ideas or lose the thread of what is being said. Again, we all sometimes lose the thread of what we’re saying and our minds go blank (if you’ve been on a training course of mine you’ll know I do this with some regularity!!) but do watch out for your loved ones and monitor how often this happens and if it’s becoming a more regular thing. Oh, and don’t put TOO much store in your parents/grandparents not getting their heads around a Smart Phone! Modern technology moves very quickly and it’s very common for people who haven’t grown up with it to be very easily confused (me included actually!!) Think more of grasping the WELL explained rules to a game of Cluedo.

People sometimes become confused for no apparent reason or show poor judgement when previously they would have been more on the ball. Among other things, this unfortunately leaves a HUGE opening for the many scammers out there who prey on older people in the hope of somehow getting their money or bank details. Sometimes these scammers are so clever that a person doesn’t have to be older, or indeed in the early stages of Dementia for them to be fooled! It’s an idea to leave answerphones to pick up a call so someone actually knows who’s on the line before they pick up. That or the good old fashioned ‘two rings then ring again’ technique! Either way, please try to make sure that your loved ones don’t fall prey to these scammers.

People may find it harder to make decisions or become unwilling to try out new things and adapt to change. To be fair, very few people are particularly keen on change, just try to judge these things based on the person you know and how they’ve been with certain situations in the past.

A person might lose interest in other people or activities. This is an interesting one because sometimes people will also do this if they are losing their hearing or eyesight (particularly their hearing). If you notice someone who used to be readily involved in family conversations for example who is now looking at the floor or staring out of a window while you all chat away, do try to find out if they can still hear well enough to actually be involved – it’s tricky sometimes because if you ask someone if they can still hear you well, often the answer is a firm “Yes of course!!”. However, losing your hearing is a very frightening and very lonely place to be at any age so it’s important that this is dealt with as soon as possible. There is increasing research now that is beginning to show a link between Dementia and hearing/sensory impairment, but I’ll write a little more on this in a later blog.

Sometimes a person can become short tempered or develop a readiness to blame others for taking mislaid items. The early stages of dementia can be very confusing and of course very upsetting which can easily lead to frustration. However, if a person has a lot of time on their hands, particularly if they are prone to ‘self-diagnosis’ they may see every single memory lapse as an early sign and could potentially fall in to depression because of it – this can also lead to Dementia (and is one of the rare reversable types, when caught early enough (the other is drug related – for example, when someone has been given a drug after an operation they react badly to which can cause psychosis). We all need to try and stay active and motivated where possible, even if it’s just through doing a jigsaw or a crossword. Look after your folks and make sure they’re physically, or crucially, mentally busy.

Once a diagnosis of dementia has been made it is then too late to sign any legal paperwork so the opportunity to do so is in the here and now. Therefore, you may want to look at the possibility of family members getting medical/healthcare power of attorney over one another. As we know, there is as yet no cure for dementia and I for one want to know that if I got to late stage, someone would be looking after my wellbeing (that is having already decided what I would like my “wellbeing’’ to be of course!!). If every member of a family is doing it together, it takes the pressure off of one person being told it would be a good idea to have (in the sense that if you are worried about a family member and suddenly suggest you have it over them, they may become extremely concerned!). Early diagnosis of dementia is crucial in order that the right medicine and therapy can commence as soon as possible, so having everything in place long before a visit to the doctors can be very helpful indeed. This is just an idea and I’m not suggesting that people rush out and do this right away, but it certainly might be something you might want to look in to.

If you’re vaguely interested in this suggestion just type in “health care power of attorney” into a search engine and have a read. Always make sure you’re aware of all the facts before signing any legal documents of any kind!

As we now know, Dementia causes the brain to see, hear, smell, touch and feel things that are not there – this can also have the reverse effect, meaning people are no longer aware of things that are there! Seeing things, or not seeing things, can be a major problem when it comes to reading instructions, turning the lights on and off, or even not recognising the toilet – Men often take to urinating in the sink as it can be the perfect height and is still a large white receptacle in the bathroom. It turns out however, that the colour red can be extremely effective when it comes to helping with such things. For some reason red is very attractive to many people with Dementia and can draw their attention quite easily. This being the case, try these simple tips:

• Put red electrical tape around light switches and plug sockets.

• Put a red notice on the fridge saying, for example, “Your lunch is in here. Please eat it now!”.

• Swap white crockery with red – often people stop eating, not because they have lost their appetite, but because they can’t actually see the food on the plate!! (mash potatoes, cauliflower cheese, fish, and the like, all disappear on a white plate).

• Put a red toilet seat on to make it more obvious which piece of bathroom furniture is the toilet.

• Use a red container for any important medication.

• Give a red drink such as Ribena or strawberry squash as opposed to water. It’s VERY important to stay hydrated, especially during summer, but water in a glass or cup simply won’t be seen.

To all of my wonderful paramedics out there, this is why it’s hard to keep a heart monitor on the finger of a Dementia patient as they are so attracted to the pretty red light! Try putting something else red and pretty in their other hand :- )

Often, people with Dementia become very wary of strangers, then equally wary of the people they love as they start to lose recognition of them. This wariness can lead to them not wanting to do the things you’d like, or need, them to do. This can be something as simple as taking a teacup away from them to wash it. So, rather than tell them, try doing the thing you need from them at the same time. In this example, get a cup yourself and say “Let’s put our cups down on the table” watching you do this can give them more of a sense of security than simply having it taken from them when they doubtless will not know why. This can be applied to LOTS of different things including putting on coats and going outside, getting ready for bed, eating a meal, washing etc… So, remember, someone with Dementia is more likely to mimic or copy you than take instruction. Remember that their mind is working very differently to yours now so try to go along with what they are experiencing rather then tell them they are wrong. For example, my grandad used to say that he thought the newsreader was watching him and, back then knowing nothing about any of this, I tried to reassure him that it was a television! I even went so far as to knock on the screen and wave my hand behind the TV to show him!! If I had him back today, I would simply say “Well we can’t have that can we” and turn the bloomin’ thing off (then play some songs by Vera Lynn, which I also never did….).

I may have mentioned this before but please try to do the things with them that they used to love! It’s not always easy with the busy lives we lead, but if they used to love going fishing for example, take them along from time to time if you can – even if you just go to the river and feed the ducks! Oh, and do remember to play the music they used to listen to or read the stories they used to love. As their brain regresses, older memories like this can be very comforting indeed.

While it is very difficult to prevent falls, we need to be aware of why they can happen so regularly. One reason is that, as the person starts to see things differently, their surroundings can become very confusing to them – even in houses they have lived in all their lives. Dark rugs, or indeed rugs of any colour, can be seen as holes, making people want to walk around them or try to step over them leading to them falling over. In fairness, rugs of any kind in the home should be avoided as they in themselves can be a hazard. Large stores and public buildings should try and avoid these rugs where possible or at least try to use bright red ones. Try to ensure that their surroundings are ‘clutter-free’ and as easy to navigate as possible. Having said this, a person with dementia can find it difficult to differentiate when the floor stops, and the wall starts. Again, red skirting boards or a hard contrast in colour between the two may help.

Now then! For some reason teddy bears and dolls can be extremely helpful! I have NO idea why this is, but I do know that many people with Dementia find enormous comfort in a toy like this and can form a lovely bond with it. I did actually buy my grandad a teddy bear two years before he died and he loved it like a son (and died with it in his arms). If they have a toy like this you can also then try talking to the toy and suggesting, for example, getting ready for bed – you might be amazed at the effect this can have!

Again, hard as this is, if your loved one thinks you are someone else (their husband/wife/sister/school friend, or whoever) please try and be that person for them for that time. Nobody is more confused than they are. Our main priority is to try and keep them calm and happy where we possibly can and while this might be terribly difficult for you, it can be very helpful for them.

Lastly, and very importantly, I need to tell you that, right at the end, in the very last stages that is – while they have lost seemingly everything and have no idea who you are anymore – they never ever lose their feelings. I have heard many people in the past say that their loved ones didn’t recognise them in the end, so they didn’t see the point of going to see them. Please go, because while they can feel lonely, vulnerable and scared, they can also feel supported, cared for and loved. Just go along and rub their arm or hold their hand and let them know they are not alone.

Sending love to all of the millions of people whose lives have been, and are being, affected by this terrible disease. You are not alone.

Love Stacey x

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