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Dementia care guide

All our carers are dementia specialists. Let’s keep your loved one at home.

Take a look at the guide we have prepared for at-home dementia care

As one of the leading experts of at-home dementia care in the country, we’ve compiled some important facts about dementia that you can use to meet the needs of your loved one.

At Cedars Home Care, we have been providing support to people living with dementia for decades. Our belief is that people don’t need residential care to receive the support and care they deserve. And with this belief, we have managed to successfully provide dementia care to numerous families around the country.

Dementia comes with a lot of adjustments that you and your family members need to be prepared for, and this guide can help you cope and manage the condition. On top of providing the best tips to deal with dementia, it also contains plenty of information on how the body and brain are affected by it.

Your relative’s world has changed because of dementia and this guide aims to assist you in understanding how.

Cedars Home Care dementia guide

About 800,000 of the people in the UK have been diagnosed with dementia. Many of them are being taken care of by friends, family and other carers that don’t get paid. 50 percent of these people living with dementia aren’t getting the help they need when it comes to things such as personal care.

There is plenty of useful information in this guide, including the following”

  • An explanation of dementia and the effects it has on the brain.
  • Memory loss associated with dementia.
  • Meeting the requirements of the person with dementia.
  • How to go about interacting with the individual living with dementia.

Understanding dementia: what is dementia?

When the brain becomes damaged, dementia usually comes about. Its main target area in the brain is the cortex (the part that thinks). As damage around this area worsens, the symptoms of dementia increase – however, the rate of progression is different with each individual.

The common symptoms include having a hard time doing day-to-day activities, problems with communication and memory loss.

As of right now, dementia has no known cure, but there are numerous organizations researching on how to cure it. There are even drugs that can slow down the emergence of some types of dementia.

The different kinds of dementia Dementia has over 100 variants. The most common one is Alzheimer’s disease. Alzheimer’s is present in over 60 percent of individuals who have been diagnosed with dementia.

Each type of dementia affects a specific area in the brain. And because every area of the brain serves a unique function, such as memory and mobility, every person exhibits different symptoms.

One of the problems individuals with Alzheimer’s face is that they have a tough time orienting themselves to their surroundings, especially when they are unfamiliar ones. People with Lewy body dementia easily become disoriented and confused, needing constant reassurance or they become agitated.

Key points to keep in mind:

  • The nervous system is also susceptible to dementia, meaning the affected individual may face problems sensing things in their environment.
  • They can face difficulties differentiating hot from cold, which can make them do unusual things, such as eat frozen food straight from the freezer.
  • Their sense of touch may weaken, meaning they might face problems holding on to things and find it even more problematic to tie a button, press a button on the remote or perform other fiddly tasks.

Dementia has 7 stages

Stage 1: Person acts normally and is able to hide lapses.

Stage 2: Still acts normally but may be forgetful at times.

Stage 3: Signs of deterioration begin to show as the person faces problems at home and at work and becomes anxious.

Stage 4: As deterioration continues, the individual finds it difficult to handle their affairs or travel. They even begin to lose their ability to count.

Stage 5: Dressing requires assistance since they can no longer do it by themselves

Stage 6: Assistance is required if the need to go to the toilet or eat. They may suffer from disorientation, incontinence or even forget who they are.

Stage 7: They become completely disoriented and incontinent, need feeding, their motor functions become stiff and there is a significant loss of speech.

At some point, some individuals may start living in the past as the dementia advances. This happens because they have lost their newest memory due to brain damage. This makes them live in the past. They could become the person they were 10-20 years ago.

They may even face problems comprehending the present-day world as it is. Even though certain concepts may seem obvious to us, to these individuals, they will be completely new. Certain behaviour, slang and technology used today may confuse them.

The individual might feel embarrassed, scared and confused. As time goes by, even family members may become unrecognisable to them. However, this is not a sign that their love is gone. They might also start revealing secrets they have never told anyone or use offensive language.

Keep these points in mind

  • On a daily basis, people living with dementia come across things they fail to understand.
  • They find it difficult to retrieve and store information because the condition has destroyed pathways between brain cells.

Key tips

  • Don’t try to remind them when they are living in the past. This can only worsen their frustration, confusion and distress.
  • Assist them in living well, even if they think they are in the past.
  • Don't force them to recollect anything by asking them to remember things, especially if it concerns recent events.
  • You need to help them live in whatever time they are in so they can cope with their dementia, and the best way to do this is to distract them with meaningful activities.

The brain is like a bookshelf – always remember that You need to look at memories as if they are books. These books have been stacked, starting from the bottom, on a bookshelf. Your brain stores recent memories on the top shelf so it can reach them with ease. All bad memories and childhood memories are stored at the bottom.

The bookshelf’s legs get wobbly when a person develops dementia, making all books on the top shelf – where short-term memories are stored – fall off. All the new books (most recent memories) have a high probability of falling off, making it harder to store them.

However, the bottom shelves remain accessible. But with the continued advancement of the condition, these books start to fall off as well. The books fall from top to bottom. In the end, the dementia will only leave the bottom-shelf memories, which are the childhood and bad memories.

Understanding which memories are available to them is vital to assisting your relative live well with the condition. The best and simplest way to find out this information is by asking them some questions to see what they can remember.

How memory works

Since the process can be disrupted by the condition at any time, it is difficult for individuals with dementia to register, store and retrieve memories.

But sometimes, the process goes off without a hitch. Although it can be frustrating when you see your relative struggling to remember something one minute and then easily remember it the next, bear in mind dementia can’t be predicted.

Memory loss and its 3 stages Register: realizing that an event has occurred.

Store: placing the memory (book) of that event on the “bookshelf”.

Retrieve: Fetching the memory.

The notion of ideas As we live our lives, ‘ideas’ of things like events, people, places and objects are stored in the brain. For instance, the ‘idea’ of an apple is stored as a fruit that is green in colour. Storing it in this manner is what make it easy to process and fetch the information in our brain about apples.

Even with the ‘idea’ of the green apple in our brains, many of us would be able to easily recognise an apple of any colour, even if it is red.

However, individuals with dementia find this extremely difficult to do. For example, if the ‘idea’ of an apple is associated with the colour green, they will not eat a red apple. A red apple would look unrecognisable to them.

Lifebooks Memories based on language (‘written’ or ‘spoken’ memories) are much harder to retrieve than those based on vision. Usually, if you show an individual with dementia a relevant image they can easily recognize, they find it easier to recall memories and speak about them.

For instance, they might not remember the person you are speaking about in conversation if you mention them by name, even if it is someone near and dear to them. But they have a high chance of remembering them more clearly if you show them a picture of the person at a very important event, such as a graduation or wedding.

Individuals with dementia have Lifebooks, which are like scrapbooks for the brain. They are filled with photographs of events, people and other things that the individual with dementia deems meaningful.

If you want to have an engaging conversation with a person that has dementia where you can help them recall memories they hold dear, using their Lifebook is an effective method. Keep in mind that home, family and work are the three key themes to focus on.

Key tips The photographs of events, people and things need to have a direct connection to your relative’s life. For instance, you can easily jog their memory by showing a photograph of a sewing machine if they worked as a seamstress at one point in their lives.

There are numerous resources on how to assist them in creating a Lifebook at the Dementia UK website.

The ‘bookshelf’ and memory The questions you should be asking yourself when supporting a loved one with dementia is when (time) they are in their life, what questions you can use to figure this out and how you can best support them in living a fulfilling life.

Always remember these three things:

  1. Work
  2. Family
  3. Home

Everyone needs a routine, and individuals who have dementia are no different. They can easily get confused when they expect to see a loved one who no longer lives with them or is no longer alive. They can also get confused when they expect to go to a job in the morning that they retired from years ago. They can even get lost at home because they think they are living somewhere they moved out of 20 years ago. Find out what your relative’s thoughts about family, home and work are, and you will know how to best help them since these things are crucial in our day-to-day lives.

Needs

Respect, dignity and privacy; those are the things everyone needs in order to live a fulfilling life. This is not different for individuals living with dementia.

Everyone’s needs and personalities are different, and even after developing dementia, an individual’s needs still remain. For instance, you still need to engage and chat with them if they were talkative and sociable in their younger days, even though dementia has made them unresponsive and withdrawn socially.

Getting to know the individual It is likely that you know quite a bit about your relative already. However, remember that they are things they may be keeping that they have never told anyone – those things might have been too distressful to tell anyone or they could have just wanted to keep their secrets.

Discovering that the individual you care about has a side you've never seen can be hard. However, to assist them in living a fulfilling life, you need to know these things.

Attachment and affection Emotions are not usually affected by dementia. These people still feel the need for security, reassurance and affection. They still require comfort, companionship and love from their fellow humans.

However, expressing their needs plainly is something the individual with dementia might be incapable of doing. But they might find other ways to communicate what they need emotionally. Keep in mind they may also ask for one thing when they mean a completely different thing.

Individuals living with dementia usually ask for the following four things:

  • Home: Could mean the require some form of familiarity.>
  • Dad: Could mean they require protection or safety.
  • Mum: Could mean they require comfort and love.
  • Work: Could mean they require security and routines.

Remember: No two people are the same. The things people need will be different depending on their relationship with their parents, whether they enjoyed their job, and how they felt about their home.

Interactions

Speaking Whether dementia causes one’s speech to change is determined on what area of the brain it has affected. The may talk slower or start to stutter. If they know more than one language, they might not be able to speak in the second language and revert to always speaking in their native language.

That is because their brain has regressed to a time when they didn’t know the second language. For this reason, you should watch the language you use when speaking to them, especially if it is technology-related or modern day slang.

Key tips for speaking with a person that has dementia

  • Use simple words and pronounce them clearly.
  • Limit the amount of information you tell them at one given time.
  • When you speak, allow the person with dementia to process your statement.
  • Your questions should require a ‘yes’ or ‘no’ response
  • Never confront them about anything – your anger will only confuse them because they might know why you’re angry
  • Their hearing is usually still intact even as the dementia advances – if they don’t appear to be responsive, they can still hear you.

Eyesight The vision of a person with dementia can be affected by the condition. Because of this, their field of view can be extremely limited. They can have other physical afflictions that also limit how much their eyes can see.

They might even forget you are in the room with them if you’re not within view because the condition affects short-term memory.

Key tips for eyesight

  • Whenever you can, sit in front of them so they can see you clearly.
  • When speaking with them, look them in the eyes at all times – make sure you’re at eye level.
  • They find visual instructions much easier to follow than verbal ones – try as much as possible to show and not tell.

Behavioural changes

The personality of your relative will not remain the same as the condition advances. The reason for this might be that the brain has suffered damage in the area responsible for personality. Another reason their attitude might change around you could be because they have forgotten who you are. Dementia affects every individual differently, but you must remember that the way they are acting is not their fault.

Social interaction

Your loved one may act in morally and socially unacceptable ways because of dementia. And it won’t be because they are uncaring or want to hurt the feelings of people around them. Usually, it is because the brain has suffered damage in the area responsible for social interaction, meaning they don’t know what is socially acceptable in most situations. They say exactly what's on their mind without filtering it or caring about the repercussions, or they may do things people regard as socially unacceptable in public. No matter how they act, support them in living a fulfilling life and don’t take these things personally (you should tell others to do the same).

Moments of lucidity

When the individual living with dementia notices that something’s amiss, these are lucid moments. When this happens, it can cause them great distress. And these moments can happen at any time. However, as the condition advances, they become more and more infrequent. All you can do when they occur is reassure them that everything is fine.

Keep these points in mind Delusions (hearing and seeing things that aren’t there) are common in individuals with dementia.

Be honest with your relative when they are hallucinating, especially if the hallucinations are making them upset. Be careful not to act in any way that will confirm their fears – you could make the situation worse.

Top tips for dementia care

Eating A person with dementia may refuse eating or have no appetite at all, and they’re many reasons why this could happen.

It could be because the food they like has changed due to the brain regressing to past times. Now they can’t ‘remember’ why they prefer certain types of food.

The age in which your relative thinks they’re living in is what will determine what food they like. This makes sense, considering that not a lot of us can say our food preferences have remained the same throughout the years.

Whether this is a serious problem or not can be ascertained by speaking to your relative and finding out why they refuse to eat.

Other reasons they’re not eating include the following:

  • Illness or pain.
  • Food is no longer recognisable.
  • Food doesn’t look the way they like or is ‘touching’
  • Not hungry – their body won’t use much energy if they live a sedentary lifestyle.
  • Age – appetites diminish naturally as we age.

Personal care

You need to respect the dignity and privacy of someone with dementia all the time. Just because they have the condition, doesn’t mean they don’t get upset or feel embarrassed.

When providing personal care to these individuals, it is extremely important to look them in the eye when speaking to them.

Keep in mind that a loved one with dementia might not understand the workings of modern technology (they might not even know what it is). This is not only limited to smartphones and computers, but lavatories, showers and other things usually found in the bathroom as well. You might need to teach them how to use them every day as well.

Disturbances in sleep

Sleep pattern disturbances are the norm when someone has dementia. Not only does this also disturb other people’s sleep in the house, the individual risks tripping and falling.

There are plenty of other things that can cause the sleep disturbances, such as nightmares, hallucinations, sickness and noises.

If the person with dementia is walking around during the night, you need to figure out the reason for this. Leave them to think first before asking them why they aren’t sleeping. Once they give you an answer, take the necessary steps to help them.

Top tips

  • Create a bedtime routine for them and stick to it. Make sure they wake up at the same time every day.
  • Create a peaceful and familiar environment in the bedroom.
  • Ensure they can always be able to see what time it is. During the daytime, leave curtains and blinds open. Also, leave clocks where they can clearly see them.
  • Sleep disturbances usually happen because of nighttime incontinence and the need to go to the bathroom. That is why it is important to watch the quantity of fluids the person with dementia drinks during the evening.
  • Discourage napping. Also, limit their intake of junk food and high-caffeine, as well as sugary drinks.