Last week was Dementia Awareness Week. We kicked off the week by taking part in the Virtual Dementia Tour Experience learning lots of new things about dementia…
We’ll share those with you shortly. If you’ve been keeping an eye on our Instagram, then you probably saw many of our images on the awaited blog post relating to our snazzy pictures.
Later in the week we were out fundraising door to door…
…this comes ahead of taking part in the Colour Obstacle Rush, where we’ll be running for the Dementia Cafe to raise more funds. There’s never a dull moment at the DC!
Here are some of the things that we learnt from the Virtual Dementia Tour Experience.
As dementia progresses, words can be difficult to find for someone with dementia. In later stages, speech will be lost altogether. This does not mean that the person who is living with dementia does not understand you. Your loved one may still talk and be very chatty but that doesn’t mean that the words are always there as quickly as they used to be, neither does this tell us whether that person is feeling isolated because they want to say something and can’t. How would we know?We may not even realise that this is happening to them. When words cannot be found, or cannot be found quickly enough, this leads to a feeling of being left out. For anyone who’s learnt a second language in the early stages, this will resonate. When you think of what to say to join the conversation, the conversation has moved onto another topic and it’s no longer appropriate to add your opinion.
Those with dementia really appreciate a connection through holding hands. It’s very simple, but it can be one of the most precious things you can do for a person with dementia. Even if you can’t join in, feeling connected is paramount. It is also important to note that relatives may become withdrawn in group environments if lots of people are talking at once. Or, around the family dinner table with more than one person speaking. It is very confusing to keep up for someone with dementia in mid to later stages. A person with dementia tends to fair better with one on one conversation.
The colour red is hugely important in dementia care. Red is the first colour our human brains learn. We identify this colour before any other and reversely, it is the last colour that we lose. When other colours are no longer recognisable, red is. As such red can be a good colour to use with those who have dementia. A person with dementia will eat and drink more if the cups and plates are red in colour. However, red comes with a warning as well. Under no circumstances must the colour red be used in personal care. Red towels or red liquids, soaps for hand washing etc. This is so important. A recorded case of a woman dying because the bathroom towels were red is unfortunately, an all too real a case.
In the case mentioned: the woman in question presumed that the towels were red because they had been stained by blood. And though in her nineties, presumed, in her confused state of mind, that the blood was menstrual blood. After finding tampons in the family bathroom cupboard, she used these and later became ill. She was then taken to hospital. Unfortunately, she later died from using the feminine products, which of course, she didn’t need to be using at all.
Duplo in dementia care is fantastic. As motor skills decline, it can be difficult to enjoy the things we used to do. The DC recently heard from a carer who worked in a care home where residents with dementia had no access to anything to stimulate his mind. He would turn over plastic disposable drinking cups all day long. Sat at a table alone, just to amuse himself. Duplo has often been used in dementia care and almost always has a positive result. It’s cheap to buy (boxes start from £12 and range all the way up to £30 and beyond depending on kits), and is easy to put together, colourful and can be enjoyed as a group or singularly. (It could also be found in second hand shops or on-line auctions.)
Music we have often heard is so important in dementia care. Even after our brains forget speech, in dementia, the mind retains the words to our favourite songs. We can sing along, smile and it brightens up our day. Dancing is great exercise whether or not you have dementia. Whether a person with dementia remembers later that day why they are happy is irrelevant. It is more important that they are happy than they are sad.
As one with dementia progresses into the disease, facial recognition starts to fade. As such, mirrors become very scary. A person with dementia will not recognise themselves in the mirror and so this appears to be someone else. A stranger. A stranger in their room. A stranger in their bathroom. A stranger in the hallway…and so on. Mirrors should never be used in dementia care homes or bathrooms or facilities. A friend of the dementia cafe recently told us of a story about her step father. He became ill with dementia and would be petrified of a man living in his wardrobe. Though there was no man n the wardrobe, there were several mirrors in his room and this she believed is where the man in the wardrobe came from. He came from the mirror.
Speaking and listening in dementia care is a tricky one to understand. While a person with dementia may appear to hear you perfectly one day and not seem to the next can be baffling. Those around a person with dementia may become frustrated or even raise their voice. To better understand the issue and find your patience here’s an insight…
Key to understanding hearing: environment. Imagine you’re on a street corner and you’re talking to a friend about their day at work. They tell you about the planning of the office party, how there will be pink drinks, everyone will wear pink, that it begins at 8pm, that you’re invited…. Got all of that? -‘Got it’ we hear you say to yourself. Well, when you have dementia this circumstance is a completely different kettle of fish. As the brain struggles to make sense of already complicated situations that you and I would find effortless, every detail only adds to confusion. If we were on a street corner, we could block out the cars, the plane flying overhead, the road works happening a few hundred yards away, the people walking by with their conversations, the woman standing next to us speaking on her mobile phone, the cyclist pedalling past, the rattle of a train in the distance, the slight gust of wind, a siren across town of a police car, the dog barking on the opposite side of the road, the rustle if your friend’s shopping bag in the wind. Now imagine that you have dementia and all of the sounds that I have just mentioned are being heard at exactly the same volume. How on earth would you hear your friend now? -This is the exact problem for those with dementia. Even in the home, Any other external noise can be interferring with you talking to your loved one.
The solution is always to rest a hand on the person’s arm or shoulder, so that through this contact, they actually know that you’re talking to them. It is most helpful to talk towards the person’s ear. Turning your face slightly towards their ear. This is good for two reasons. One, it allows them to know that you are talking to them and two, it is less intimidating than starring into someone’s face and talking at their face. If you are about to embark on a conversation with someone who has dementia, remember the three points:
- Exclude background noise if you can (switch off the TV, close the door etc)
- Rest a hand on someone’s arm or shoulder to get their attention
- Talk towards the ear, so they can hear you, so that they know you re engaging and so not to be intimidating in your approach.
The next point is permission. Permission is indicative of a person’s behaviour. You would think perhaps that not giving permission for something is the most freeing of all. We are talking about permission in daily life. Why in any event would we need to give permission to someone to just be themselves? This may sound strange or even patronising but in dementia it can be crucial. A dementia care home case study told of a man who had appeared to have waited to go into the bathroom one morning and then stood outside the bathroom, only to later mess himself rather than use the toilet. Carers assumed he had passed the stage to be able to control himself and was at the stage of incontinence. They assumed that the brain had forgotten to tell the body what to do and what not to do. Not so. Luckily in this instance an expert observed and was on hand. He apprehended the carers and asked them not to ‘pad him’ with incontinence pads but rather the following morning to say to him “I need you to go into the bathroom and go to the toilet for ___ “(insert appropriate request here). The carers agreed to ask this of the man the following morning. He did as he was asked. There was consequently no need to ‘pad him.’ This was therefore less work for the carers and gave the man his independence and dignity for longer.
So what is it then about permission and why is it crucial in dementia care? -When you slowly lose the ability to make decisions and you are so focussed on just getting through the day, hearing conversations, moving around successfully without falling, grasping things using motor skills when dexterity isn’t as good as it was and when basically, everything becomes a struggle. You don’t always feel in control. As the feeling is lost, one Does wait for instruction on things. This is one of the most alarming things that instantly comes to you, within seconds, when you take part in the Virtual Dementia Tour Experience. Anyone who has taken part will understand this. It cannot be explained as to how or why. It is the brain reacting to the simulated experience. Not everyone reacts in the same way but everyone reacts with apprehension and awaits instruction. It is the case of feeling that you are either not allowed to do something or that you may do the wrong thing. You know that you are no longer ‘in charge’ but you don’t know how always access the person who you think is. A very difficult feeling to explain in words and one of the reasons the Dementia Cafe recommends everyone take part in the virtual tour.
In the later stages of dementia we talked about mirrors and how facial recognition is lost. As such, the person with dementia may no longer recognise you. You may see someone with dementia touching someone’s face. Do not be alarmed by this. This happens so that a person with dementia can explore the face and make sense of it, as they may not be able to do by just looking at you. If you can allow someone to touch your face it may help. Not always will the person recognise the face after doing so but in many cases, given time and patience they will. This also connects the person with another as well.
Socks in dementia care can be ever so helpful and really make someone’s day and it has nothing to do with having cold feet!
When you have dementia, as the DC learnt from taking part in the Virtual Dementia Tour Experience, it’s very difficult to feel included and beyond that it’s very difficult to feel useful. To know what to do. To enjoy a task. We talked about Duplo and fun and we talked about permission. Imagine your life without purpose. No where to go, nothing to do, no one to be. Sounds lovely for a few seconds and then you feel insignificant. This is what we do not want. We don’t want a person with dementia to fade away. If you ask someone with dementia to pair socks for you, they will usually do this. This is a useful task that they can do every day. We mentioned this to someone who cares in dementia recently and they responded with ‘you’d need a lot of socks.’ Our response: ‘Not at all!’ Most people have at least seven pairs of socks, one for every day of the week. Allow the person with dementia to pair the socks. If there are seven pairs or even two pairs, it matters not. It doesn’t matter if the socks are paired wrongly. This is a task which gives back a feeling of being useful, of having purpose and of having a responsibility, even if it’s only for socks. Another way to look at it is, there are 12-16 hours in a day. (Depending on whether you sleep for 8-12 hours accordingly), so even if someone enjoys Duplo for half an hour, what will they do for the other 7.5-11.5 hours in that day?
Clocks in dementia care can ruin a person’s life. You may or may not have heard of Chinese water torture. “Victims were strapped down so that they could not move, and cold or warm water was then dripped slowly on to a small area of the body; usually the forehead…” (Wiki)
For a person with dementia a clock ticking, even ever so slightly will be heard at an amplified volume. As such, the ticking clock is then no longer heard like a ticking sound but rather a dripping tap or a water droplet resounding on a large drum. If you could hear a drumming or loud dripping sound constantly, it would eventually drive you to distraction. Sleep deprivation in dementia care is often a huge issue. Relatives may not sleep through the night and wander from their bedrooms in the small hours. It is often then that families opt to place loved ones in care homes. Almost always a person with dementia is found to have a clock in their bedroom. We urge everyone who knows someone with dementia to check if this is the case to remove it and if possible replace with a silent clock. Digital options can be better. DO check the volume by holding it close to your own ear first. When clocks are removed form bedrooms, those with dementia usually continue sleeping through the night. Often a person with dementia will tell you about a beating drum or water or a dripping tap. This is what they will be referring to. Ticking. If we can help to stop the ticking, we can stop the torture. Many sounds in dementia cannot be switched off (outside sirens, passing cars etc) however, ticking clocks can.
All hail trainers. Well, we never thought we’d find ourselves saying that! If we can’t hail the trainer, we can find a cushioned or memory foam inner sole. The reason being that a cushioned shoe can help prevent falls in dementia. Balance and movement becomes a serious issue for those with dementia. Falls are prevalent and can cause long hospital stays, could then induce secondary infections and in extreme cases lead to death. If falls can be prevented all together then all the better we will be. Studies have shown that a person with dementia wearing trainers who has previously struggled with walking, improves the posture and reduces the shuffling. Often those with dementia walk about in lose fitting slip on shoes or if they are lace up shoes, they are of a harder sole variety. If trainers are not an option, soft cushioned or memory foam inner soles can be placed into an existing shoe as an alternative.
Let’s rave on the red cup. We all know red cups mean party right? Well not any more. Red cup now means drink more and in a good way. As we spoke about with the red earlier and the seriousness of not usng red in personal care. Red we mentioned in table wear can see a person with dementia dramatically increase their intake of food and liquid. This is good news all round. A greater fluid intake means that mentally, a person will be more coherent and alert. Lack of water to the brain can cause numerous symptoms including problems with focus, memory, brain fatigue and brain fog, as well as headaches, sleep issues, anger, depression, and many more. If the brain is just 1% dehydrated you will have a 5% decrease in cognitive function. Add this to a brain with dementia which weighs about the same as an orange and is struggling with daily tasks that we take for granted and the result = not great. So drink up we say! -Water and water based drinks in red cups. It’s time for: party-hydration.
Dolls (or teddies) in dementia care are often very popular. They can ease frustration and be a comfort to someone with dementia. Last year the DC ran a #BearNoJudgement campaign, asking people to pose for selfies with their bears, for prizes to help remove the stigma. Here’s our founder Emily with her bear:
Emily’s Mum often cuddles bears or carries them around the house, rearranging them. She wasn’t introduced to them as it were because they were already in the house, since Emily had a bear collection as a child. These have now been adopted by her Mum. It is very common in dementia care to see someone with dementia have a doll or stuffed animal as comfort. Sometimes relatives are embarrassed by this. At the DC we think it’s important to remember that the person with dementia is not embarrassed and we think – need we be then in this case?
Here’s an account from the Alzheimer’s Society: Gradually I shifted the little Billy doll so it laid it’s head on her knee and she sat there stroking its head and smiling. Eventually I let her hold the baby doll and she spent 2 or 3 hours cuddling it and talking to it. It was lovely to see her so happy. I took it with me when I left because I realised having to look after it would stress her. The next time I went down with my little Billy doll I did the same again and it gave her some great comfort. Then very quickly in the afternoon Mum started to get angry so I immediately removed Billy upstairs. I find the doll gives her a lovely focus but you have to be careful that you only do things slowly and never force anyone to do anything. Let them decide they want to engage with it. And most importantly if it stresses them then immediately remove it and distract with something else. I hope this helps someone else as it as helped my Mum to feel engaged again.
We ask all to try to be understanding with those who have dementia. No person with dementia is ‘being that way’, or doing something in a way to offend anyone. Dementia is a brain disease or rather, a set of different types of brain diseases, whether it be Parkinsons Disease, Alzheimer’s Disease, Vascular Dementia or many more…
Each person with each disease will behave in a different way. Not all brains are attacked in the same way with any of the diseases. It can be frustrating to deal with. Outbursts of anger may occur from a person with dementia. Spells of sadness and depression may stem from seemingly nowhere one day and that person can be fine the next. We ask everyone to try to put themselves in that person’s shoes. What have they done today? Have they been sat in front of the TV without anyone holding their hand and talking to them? Would you be angry if you were left in this way? Would you be bored? What we all have in common is that if we want to go to the shop, we can. If we want to eat something, we can. A person with dementia no longer has this access, sometimes even these rights if they’ve been removed. Eg: wandering, perhaps their access to leave has been denied from them. As a carer we must ask ourselves, what have we done today that is engaging for that person or different from yesterday. What have we done if they are angry to distract them? We ask everyone never to blame a person with dementia and we know that the urge to walk away is challenging. Tasks must be offered to the person with dementia. Toys, mental stimulation, teddies, games, music, dance, one to one conversation, even washing a persons’s hands if they seem not to want to just hold hands. All activities will help to extend a person’s life, to keep them mentally and so physically capable for longer. Sitting in front of the TV day after day or being left in a chair is not the answer. Sadly this is so often the case in ill equipped care homes or relatives not in the know. Human beings need interaction. Please try to imagine being in their shoes. Ask yourself how long has that person been sat in their chair today?
Alarmingly many people still do not know that dementia kills. The DC recently met a handful of carers. Some of whom had been working in dementia care for twenty years. When discussing death in dementia they had questions like: “How does dementia kill then?” and statements such as “We didn’t know that dementia could kill.” Our founder Emily had the same questions for the doctor when her Mother was diagnosed and she was told the news. “Your Mother has Alzheimer’s Disease and it will kill her”. How then does it kill? Well, dementias are brain diseases.
Dementia kills by slowly shutting down the brain. In early stages one may forget keys or find the key and not remember what to do with it. This will then progress to memories of events, eg holidays being lost. As the disease takes hold of the cells in the brain and they cease to function, movement is compromised, balance will go. Hearing becomes difficult (as mentioned earlier) and confusion sets in due to that. Speech will be less instant. Finding the words will take longer. A person will become slower, reacting less quickly. They may not dress appropriately and get cold, meaning that pneumonia could kill them, onset by dementia. A person with dementia will not feel hot or cold and must be checked on temperature wise to see that they’re ok. Ultimately if a person isn’t taken ill by a secondary infection, (since the body has a weakened immune system in dementia), the brain will eventually kill them indirectly. This occurs when the brain forgets to tell the lungs to breathe or the heart to beat.
Let’s look at the numbers … dementia is one of the biggest silent killers in the world today. The global killer which has almost 44 million people worldwide in it’s clutches spares no victims. There is currently no cure or prevention for the disease. Dementia kills as many people as cancer does. Shocking statistics. The worst part about it is that if you ask someone who has dementia if they have dementia they may be likely to say “no, I’m fine”. Since those with the disease unable to advocate themselves it’s no wonder it is often overlooked. Many people see those with dementia as: ‘just old’. But are they? Can we really say that then means they don’t matter? The average age is 60 that one will develop a form of the disease. With the average age in the western world that one lives to being 85-90 that’s almost one third of your life taken from you as well as all of the memories of the things you did in your life. No one wants that!
The struggle with dementia is not an easy one. This we understand at the DC, as our founder Emily knows all too well. Her Mother has Alzheimer’s Disease and that is the reason she chose to set up the Dementia Cafe. Demenita is frustrating, for Both sides. Those living with it and those living alongside those living with it. Here at the DC we see a gap in the care market, we know that noisy echo-ey wide open spaces are not suitable for those living with dementia. We know that in many cases, with many of the things we have talked about above, a person may not need to go into care and if we can make a few adjustments they can continue living at home for longer and socialise in a safe environment. We regularly liaise with Alzheimer’s Research UK to help where we can. We know that research can tackle the issue of dementia if we can find a cure. We work with the Alzheimer’s Society UK to back social policy reform with initiatives such as Mr David Cameron making London a more dementia friendly city. What we the Dementia Cafe intend to do is be the hand holding, tea making and all round understanding for those who have dementia in your community. We’re not costly, we are free. We are non-profit. We can see the importance of ‘purporse built’. We will be wheelchair accessible and we will be fun. Together we can understand dementia and enjoy what we can do rather than be saddened by what we can’t. Come into the cafe, take off your coat and take off your worries. Whether you have dementia or not. The Dementia Cafe, Mi Casa Es Su Casa: (my/) Our House Is Your House.