What is dementia and what are the types? The Dementia Home Care Guide for Live in Care
The term ‘dementia’ doesn’t refer to a particular disorder, but instead is a broad phrase used to describe the symptoms associated with a decline in memory or cognitive skills. This decline, which is often caused by brain diseases such as Alzheimer’s, or even a series of strokes, is severe enough to prevent the individual from carrying out everyday tasks on their own. They may struggle to respond to their environment and, as the disease progresses, are likely to need around-the-clock care.
Symptoms can vary greatly depending on the cause of dementia, but the key indicators are:
• Memory loss
• Difficulty with organisation and planning
• Difficulty with speech or finding the right words
• Confusion and disorientation
• Poor judgement
• Depression and other major changes in personality
Naturally, many of these symptoms can be associated with the ageing process, which is why it can be difficult to diagnose the condition in its early stages. It’s important that the individual is assessed by a healthcare professional to determine the reason behind any noticeable changes in behaviour.
Supporting those who are caring for a loved one with dementia
Dealing with the onset of dementia is of course very distressing for the person who has been diagnosed with these symptoms, but friends and family are also greatly affected by the disease.
Live in care is often the best option for everybody involved. This dementia care guide is designed to provide expert advice and information for those who are caring for their loved one in their own home.
Dementia: the 7 stages
It’s important to understand how dementia can affect an individual. Here, we’ve listed the recognised 7 stages of the disease.
1 – The person will appear to behave normally, and will be able to recover from the common symptoms of ageing, such as temporary memory loss.
2 – The person may experience increased, but otherwise ‘normal’ forgetfulness. He or she will perhaps misplace items on a regular basis, or will have trouble recalling someone’s name.
3 – The person will have difficulty concentrating, will forget things more frequently, and may struggle in the workplace. Their family and friends may notice that they are beginning to deteriorate.
4 – At this point, the person will struggle to manage their own affairs. Problems concentrating and recalling recent events are common, and socialising or travelling may become difficult; the individual will often avoid social situations altogether.
5 – The person will need assistance with everyday tasks such as cleaning, dressing and preparing meals. They will also begin to forget aspects of their current lives, such as their address, phone number or the date.
6 – The person will display much more severe cognitive decline and will need help eating, using the toilet and controlling their bowels and bladder. Compulsions, delusions and general agitation may also be present.
7 – At this stage, the person will not be able to speak or communicate. They will lose their motor skills and will struggle to walk or stand. They will need assistance with virtually all everyday tasks.
Living in the past
Dementia damages the brain in such a way that often many of the individual’s recent memories are lost. This can mean that they are effectively “living in the past” – they may feel as though they are the person they were years (or even decades) ago.
For this reason, they may not recognise younger members of their family, and they may struggle to understand newer concepts, such as modern technology, or phrases, including slang words. They may even begin to refer to a friend or family member who has passed away.
The best way to deal with this is to help the individual live as well as possible in the time that they believe they are in. Don’t try to bring them back into the present day, as this will only cause further distress and confusion. Instead, ask them about the life they are perceiving – what are they doing? Where are they living? What are they feeling? Talking to your loved one will help you build a picture of how they perceive their environment, which in turn will help you understand where they are coming from and how to best cope with their demands.
Dealing with memory loss
Dementia disrupts the memory retrieval process. The individual may find it difficult to remember an event that happened a few hours previously, but may have a crystal-clear recollection of something that happened 20 years ago.
He or she may also struggle to identify common objects. This is because our understanding of the things we come across in life are stored as ‘ideas’ in our minds; our brains create simple images of everyday items so that we can ‘match’ these images to the things we encounter in our environment. When a person is suffering from dementia, retrieving these images becomes much harder, and the things that they used to know well can become very unfamiliar to them.
For those with dementia, image-based memories are easier to retrieve than spoken memories. One of the most effective ways to trigger memories from your loved one’s previous life is to put together a ‘life book’. This is an image-based journal which should contain lots of photos of people, and even certain occasions, such as weddings or birthdays, that are important to them. You can draw upon these pictures if the individual is struggling to recall friends, family or past events.
Interaction and communication
The key thing to remember when interacting with your friend or family member is that they are still the same person – they just have different needs because of their condition. If they have always been sociable and outgoing, they will still appreciate being engaged in conversation, even if they may appear more withdrawn or uncomfortable than usual.
One of the most common challenges for those who care for people with dementia is communicating with their loved one. Dementia can cause slow or stuttered speech, and can make it difficult for the person to talk clearly, or find the right words to express what they want to say. Understandably, this can be frustrating for all parties.
It will help to bear the following tips in mind in these situations:
• Be sure to speak slowly and clearly, using simple language
• Don’t overload the person with information • Give them time to think about what you’ve said
• Ask ‘yes’ or ‘no’ questions where possible
• Try not to get angry or confrontational
Hearing is not always affected by dementia – the person may still be able to hear what you are saying, even if they are not responding as they normally would.
Sometimes, the individual may express behaviours that are improper or offensive (for example, they may begin to spit or pass wind in public). This is because dementia affects the part of the brain that identifies the difference between what’s socially acceptable or unacceptable. If this happens, remember that the person is unaware of their behaviour – they’re certainly not doing these things on purpose to try to cause any hurt or embarrassment.
Occasionally, the person may experience what’s called a ‘lucid moment’ – they may realise that something is ‘not right’ and become distressed at their situation. If a lucid moment occurs, the best thing to do is provide reassurance and support until it passes.
Caring for your loved one
Caring for a person with dementia on an everyday basis can throw up a number of challenges.
Your loved one may be refusing meals, for example. This could be for any number of reasons – he or she could be feeling ill; they could no longer recognise the food that you’ve prepared for them; or they could just simply not be hungry, but they don’t know how to communicate this to you. Be patient and talk to the person to try to determine the problem. If they refuse to eat for a longer period, speak with a healthcare professional to devise a plan that will ensure they are still getting the nourishment they need from a limited diet.
Assisting your loved one with bathing and other aspects of personal care can be challenging for the both of you. The main thing to remember in these situations is that the individual’s privacy and dignity need to be maintained. He or she may well feel embarrassed or helpless, but by remaining calm and maintaining good eye contact, you can make them feel more at ease. If modern technologies such as lavatories and showers become unfamiliar, take the time to explain how they work and how to use them.
The importance of routine
One of the best ways to ensure the individual is comfortable and free from distress is to stick to a regular daily routine.
Those with dementia will often experience sleep disturbances. They may be particularly sensitive to noise, or they may suffer delusions, hallucinations or nightmares. Night-time incontinence is also a common issue. To minimise disruption to sleeping patterns, it’s important to make sure that the person wakes up and goes to sleep at the same time every day.
It’s also best to avoid napping where possible (but if your loved one does need a rest, again, make sure it’s at the same time every day). Try to avoid letting the person drink too much fluid as the day comes to an end, too, as this will go some way to preventing them from needing the bathroom at night time.
Finally, talk to the person to find out why they are walking around at night. There’s often a simple reason behind their sleeplessness that can be eliminated altogether.
The Contented Dementia Guide and the Three Golden Rules
There is no one way to manage dementia; everyone who suffers from the condition will have different needs. If they remain patient, compassionate and are willing to identify patterns and preferences, the individual’s carer will develop the best understanding of how to deal with most situations as time passes.
Generally, we would advise sticking to the Three Golden Rules, as outlined by Contented Dementia Trust:
1. Don’t ask direct questions
2. Listen to the person with dementia, and learn from them
3. Don’t contradict or argue
These Three Golden Rules are counter-intuitive to most of us, but when followed correctly, they can greatly improve the lives of the dementia sufferer and those who are caring for them.
If you would like more information on how to provide live in care for those with dementia, we’ve provided some useful links below.