Frequently Asked Questions
How does the Dementia Dictionary work?
The Dementia Dictionary is the worlds first dementia specific communication service to start to translate the 'Language of Dementia'. The content of the dementia dictionary is driven through the Dementia Interpreters forum and is discussed to translate actions, behaviours, emotions, noises and situations.
Dependant on the type of dementia that the person has been diagnosed with, they may start to lose the capacity to communicate.
Imagine what it would be like to live in a care home where staff and visitors do not speak your language and you do not speak theirs. For many people with dementia, this is their reality and why learning the language of dementia is so important for everyone who comes into direct or indirect contact with people who have dementia.
The Dementia Dictionary is a service that translates this new communication into an understandable language to reconnect to people with dementia.
Once the translations have been agreed and modulated by a panel of level 5 Dementia Interpreters, then they are published into the Dictionary. The Dictionary works the same as google, you type a description of the issue you are trying to understand and it will search for the answers.
You can also find useful information, latest news and sign up for our monthly newsletter.
Is the Dementia Dictionary free and how is it funded?
Yes the Dementia Dictionary is 100% free of charge for you to search for answers to communication issues that you may be experiencing whilst supporting a person who has dementia. It is also 100% free to request something to be translated by the Dementia Interpreters.
The Dementia Dictionary is funded through the work of Training 2 CARE Group, a major UK based training provider that delivers specialist and unique dementia training courses. Unlike any other privately owned training provider, they are passionate about improving the lives of people who have dementia and they continually re-invest profits back into unique services, training and donations to charities.
How do I search the Dictionary?
The Dementia Dictionary works the same as google, you type a description of the issue you are trying to understand and it will search for the answers. The only difference is that it will only search the content of the dictionary.
Once the translations have been agreed and modulated by a panel of level 5 Dementia Interpreters, then they are published into the Dictionary and are available to all.
Is there ever more then one answer or translation?
We recognise that dementia is an individual journey and with over 100 recognised forms of dementia there will be differences between types of dementia and each individual person. The Dementia Dictionary will therefore look at multiple translations for each question so you can choose the translation that best suits your situation.
I can't find a translation for what I have asked, what do I do?
The Dementia Dictionary is a live and continually evolving website and the content that is published is delivered by the global Dementia Interpreters network. This means that only translations that have been discussed and voted to be correct will be published within the Dementia Dictionary.
Once this happens the interpretations are then put to a panel for final modulation and then defined. Once they are defined they are published onto the Dementia Dictionary.
Even once a translation has been defined and published, it may change dependant on new research and continued discussions creating an on-going evolution of the Dementia Dictionary.
This Dementia Dictionary evolves every time that someone adds a situation, behaviour, noise, action or body language to be translated and therefore the more questions you ask, the more translations can be published.
This is your Dementia Dictionary, we welcome your questions, and your involvement as we we want to build a unique service that will change lives.
To ask a question of the Dementia Interpreters Forum, please click on any tab within the Dementia Dictionary that says 'ask a question for interpretation'.
Does the Dementia Dictionary give me advice about how to improve environments etc?
The Dementia Dictionary does give advice within the translations on methods to improve particular issues within the defined translation. However, to learn how to resolve many issues related to dementia you would take either the community edition or the professional version of the Dementia Interpreters course and become a registered Dementia Interpreter.
For more details on these, please go to the 'tab' named Dementia Interpreter.
I would like more information about dementia, can I do this through the Dementia Dictionary?
We have a 'tab' called Dementia Information on the FAQ page and we also have a 'tab' called 'Latest news' on the home page which gives you information about dementia from many different sources.
Please note that we do not discuss medication within the Dementia Dictionary and would direct you back to your Doctor or pharmacist.
How is the information published on the dictionary assessed and modulated to ensure it is correct?
The care of people with dementia is still in its infancy. Indeed, it has only been less than 30 years since people with dementia have been supported in the amazing ways we do today.
We are still learning; we are still only scratching the surface of understanding the changes that need to be made to allow us to best support people with dementia. We are making vast strides towards this understanding, but we are many years away from making the needed adjustments for all.
As we stand, today, there is not one person or organisation that has all the answers. There are amazing individuals that are trying new things and there is progress in areas such as music therapy and food but one person is never going to unlock the mysteries of the diseases that make up the dementia umbrella. This is where the Dementia Dictionary has been born and for the first time, we are going to connect everyone who has a passion for dementia (at any level) and learn from each other's practices, systems and experiences that have worked and also from all around the world.
Once a question has been asked of the Dementia Interpreters, they will discuss via the Interpreters forum and put ideas across on why they think a behaviour, action, situation, noise or body language has happened. There will be many opinions and these will be further discussed and then voted on by each Dementia Interpreter. Once we have enough information and votes, these suggestions will be put to a board of trusted (level 5) Interpreters to agree which ones should be defined and published within the Dementia Dictionary.
Even when a translation is made, new research, discussions and ideas can be put forward and changes will be made to the Dementia Dictionary so that it continually develops over time to be even more effective in learning the 'Language of Dementia'.
The board of level 5 dementia interpreters, will change every 4 months to ensure that it is constantly refreshed and that the Dementia Dictionary never becomes one persons or one groups idea on what should be given back to the world.
All translations will be politically correct to the current climate of dementia protocols and we will have the highest standards when publishing translations.
What is the Interpreter Forum?
The Interpreter Forum is a unique collaboration of dementia professions (of all levels and qualifications) and families that are committed to understand, learning and translating the language of dementia. Through the forum they discuss different actions, behaviours, body language, noises and situations to translate them into an understandable language.
Dementia Interpreters will have taken the Dementia Interpreters course and go through levels of achievement to eventually be recognised at level 5 and be recognised at the highest level.
You too can become a Dementia Interpreter and just go to the Interpreter 'tab' to find out more.
Is the Dementia Interpreters forum just in the UK?
This is a global site and we are proud that one of the largest non-profit (charity) organisations have decided to partner us in both the Dementia Interpreters courses and the Dementia Dictionary. We expect to be rolling out in Australia and Canada in 2021 also.
Second Wind Dreams® in America is proud to join our UK partner, Dementia Interpreters Limited, as we launch the exclusive Dementia Interpreters course created by CEO Glenn Knight.
The Dementia Interpreter course is designed to enable participants to better understand people living with dementia and recognize that their behaviours are often a way of communicating.
Becoming a Dementia Interpreter is a 5-stage qualification process beginning with experiential training. You will be recognized for each achievement level after completion. Once you have become a fully qualified, level 5 Interpreter, you will have met and developed your skills to the highest standards, however, this is a lifelong commitment, and you will have to continually increase knowledge to support everyone.
Second Wind Dreams® is an internationally known, non-profit organization dedicated to changing the perception of aging through the fulfilment of dreams and the offering of educational programs including its flagship, sensitivity training, the Virtual Dementia Tour®.
Second Wind Dreams® was founded in 1997. Its name derived from a novel of the same name by P.K. Beville, a geriatric specialist who wrote, colourful and sometimes hysterical people who live and work in nursing homes.
Since 1997, Second Wind Dreams has become involved in more than 1000 eldercare communities in 20 countries. Weaving thousands of dreams from the simple to the sublime, the mission of Second Wind Dreams is to change the perception of aging through the fulfilment of dreams and the offering of innovative education opportunities to caregivers and communities.
Second Wind Dreams is a 501(c)(3) non-profit corporation governed by a board of directors that provides the guidance and support necessary to continue its mission and expand its impact. Financial support for Second Wind Dreams comes from individual contributions, memberships, corporations and eldercare industry associations. Additio9nal revenue is generated as a result of Second Wind Dreams’ educational program, the Virtual Dementia Tour®. The Virtual Dementia Tour is a scientifically proven method designed sensitively toward those with dementia.
Is the Interpreter forum on an app?
We are launching with the web site as phase 1. The Dementia Dictionary and Dementia Interpreters forum will be constantly updating with new information, research and changes as we start to understand how people are using them.
Unlike any other website for dementia, this site will constantly evolve and change and we would like you to tell us how you would like to change it.
Phase 2, will be an App and we expect this during 2021.
Can anyone access the Dementia Forum?
You have to be a qualified and registered Dementia Interpreter to be involved in the Interpreter Forum.
You can be a Professional Dementia Interpreter if you work with people who have dementia or you can be a Community Dementia Interpreter if you are general public or people outside of the care profession.
Please go to the following tab to find out more: Dementia Interpreter
Can I ask the Interpreter forum questions?
The simple answer is yes and we want everyone to ask the forum questions that can be discussed and translated.
If you have a loved one or any person who has dementia doing something that you do not understand or think is just part of their dementia, then we want to hear from you. You are 100% the reason for the Dementia Dictionary and by being able to reach out to Dementia Interpreters for the answers, will benefit you, the person and millions of others with a diagnosis of dementia.
You just need to go to: http://www.dementiadictionary.2dservers.net/forum/new-emotion.php or press any button on this web site that says 'ask a question for interpretation'.
Here you will be able to do the following:
- Place a title to your question.
- If needed or wanting to, you can put a you-tube video of your question just in case it is hard to explain.
- Describe the behaviour, action, noise, body language or situation that you would like translated.
Please note that this is 100% confidential and free and we will not directly contact you. Translations need to be discussed by the global Dementia Interpreters and this could take some time, so please keep coming back to the dictionary and checking for the translation. We will only publish answers once they have been modulated by our board.
What is a Dementia Interpreter?
To understand what a Dementia Interpreter is, we need to first understand what the words mean.
Dementia: An Umbrella term for over 100 diseases associated with the decline of brain function.
Interpreter: A person that interprets and translates, speech and communication into another language.
Dementia is now a word that everyone knows, even if they don’t know exactly what it is because they may never come into contact with someone who has dementia. For most of the general public, this word dementia is feared because of inappropriate media stories and the life experiences that people tell others. The experiences they discuss about dementia, always seem to be about the negatives rather than the positive experiences they had. In the world, we are still in the infancy of really understanding dementia even though research is helping us to find the key that unlocks the mysteries of these diseases. We have the opportunity to change what happens to people with Dementia in the future by the amazing work that is happening today.
The major challenge that we have with dementia is that no one is prepared for this disease and a massive majority of families have no knowledge of it when they eventually have a diagnosis for a family member. It is thought that around 75% of people who are diagnosed are starting their personal journey of dementia being supported by loved ones that have never come into contact with the disease. These distraught family members are then left to their own devices to find out about what is going to happen and often turn to ‘Dr Google’ for advice. Lack of knowledge can lead to speeding up the development of dementia and this needs to change for everyone in this situation.
As the journey of dementia develops, these families then turn to the care industry for support and meet some amazing people that have dedicated their lives to supporting people with dementia to live the final part of their lives in the best way they can. Sadly, these two groups of people are only connected when the disease has developed to a stage where professional care is the only option. It is the sad truth that by the time people with dementia are connected to the care professionals, often their family relationships are disjointed and sometimes broken.
The ‘worldwide’ Dementia Interpreter network is committed to reconnecting families by teaching them the language of dementia and ensuring that the persons voice is always heard. Sometimes the most obvious change is so simple that we just can’t see it and this is where the art of dementia conversations is needed.
As the brain loses the ability to speak as it would normally, it will find will find new ways to compensate and begins to invent a new language. These new and unnatural ways to speak will seem strange to the people around them and often labelled as a ‘dementia trait or strange behaviour’ and therefore a wall is being built in between the relationship and the family dynamic becomes disjointed. This self-taught language however seems to be universal across the dementia landscape and together we can start to learn how to translate this into our language.
Just imagine you lived with people that couldn’t understand the language that you are speaking, how would this feel?
The Dementia Interpreter network has a mission to give people the power to reconnect with each other and by doing this, we will smash down the barriers keeping them apart. Dementia Interpreters are people that are committed to learning the language of dementia and sharing it with the world. They start their ‘career of speech’ by being placed in the same situation as people with dementia. We take away their ability to speak, see, hear and even use body language and they are forced to find new ways to communicate. They feel first hand, the isolation, frustration and anxiety experienced by so many that have dementia and start to mirror the way they communicate without even realising. Having the opportunity to spend some time in their world, Dementia Interpreters find the empathy needed to want to change their understanding, they have the realisation that communication is at the heart of dementia care and they will help everyone to build the pathway that connects us again to the person.
The Dementia Interpreters network is built to serve these families in need and is committed to building the world's first ‘Dementia Dictionary’ that will be freely given to the people we serve via a digital platform. The Dementia Dictionary is the ‘dementia language guide book’ where people can reference behaviours, actions, noises and body language that have been translated into our language. This will be built only by the whole Dementia Interpreter network and isn’t be one person’s opinion or viewpoint and therefore will be thorough and continually developing. The Dementia Interpreters will network and discuss descriptions of behaviours within the Interpreter forum to accurately translate these into the new language and then the answers will be given freely to the world.
Why should I become a Dementia Interpreter?
The care profession for people with dementia is still in its infancy and advances in dementia understanding has come a long way over a relatively short period of time. It is recognised that communication is at the heart of everything that we do within our industry and we need to make a commitment that everyone must have a greater understanding of communication to continually improve outcomes for people who have a diagnosis of the dementia.
Communication is not just about speech and how we talk, it is also about how things around the person communicates with them. Examples could be:
- How the environment speaks to the person.
- proper and effective signage.
- How food talks to a person and what it tells them.
- How advanced care planning can help communicate even if the person has lost the ability to speak.
- What the body communicates to help us diagnose sickness.
- How the clothes we wear impact on people who have dementia.
This is not an exhaustive list, but starts to help you realise that everything communicates with people who have dementia and we have to make adjustments to improve their everyday lives.
If you live with or work with people who have dementia, this course can help you to reconnect and understand. So many families tell us that the reason they have had to place a loved one into care is because they no longer understand the person and therefore, they need professional help for their best interest. Being a Dementia Interpreter and understanding the language of dementia, you will be able to make small changes and hopefully learn skills to help you and them stay together longer.
What are the benefits of being a Dementia Interpreter and for whom?
Person with dementia Families Community Dementia Interpreter Care Provider Improve communication Improve communication Improve communication Improve communication Improve communication Improve Understanding Improve Understanding Improve Understanding Improve Understanding Improve Understanding Improve Care Improve Care Improve Care Improve Care Improve Care Improve environments Improve environments Improve environments Improve environments Improve environments Improve interaction Improve interaction Improve interaction Improve interaction Improve interaction
Reduce Negative behaviours
Reduce Negative behaviours Reduce Negative behaviours Reduce Negative behaviours Reduce Negative behaviours Improve continence issues Improve continence issues Community recognition Improve continence issues Improve continence issues Improve health outcomes Improve sleep Improve health outcomes Improve health outcomes Improve health outcomes Reduce Anxiety Improve interaction Community involvement Improve interaction Improve interaction Slow the disease progression Improve health outcomes Community Understanding Improve health outcomes
Make visiting easier
Reduce feelings of Guilt Slow the disease progression Reduction of using emergency services Slow the disease progression Use of Dem Int Logo Stay at home longer Reduce anxiety for all Slow the disease progression Reduce Anxiety Press opportunities Reduce fatigue Reduce feelings of Guilt Improve Empathy Reduce feelings of Guilt Improved CQC Rating Use beneficial technology Improve Empathy Keep people at home longer Improve Empathy Staff attraction Find local services Understand emotions Find beneficial technology Improve practice Staff retention Reduce Fear of Dementia Stay at home longer Prevent legal action Improve understanding Reduce empty beds Reduce Wastage Reduce fatigue Signpost information Improve food and drink intake Competitor advantage Save Money Reduce confusion Press opportunities improve sleep Improve staff/family relationships. Communicate with others Find beneficial technology Reduce fear of dementia improve time management Improve staff/resident relationships Ensure Voice always heard Grow a support group Higher employment Reduce fatigue Improve profitability Re connect to family Improve understanding Improve safety Find beneficial technology Reduce unnecessary hospitalisations Easily transition to care Find local services Improve economy Find local services Slow progression of disease Reduce confusion Talk to interpreters Improve Lives Use advance care planning Improve environment Improve sleep Make visiting easier Make Visiting Easier Improve food and drink intake Improve food and drink intake Reduce unnecessary hospitalisations Learn from other Interpreters Reduce wastage Improve safety Reduce Fear of Dementia Press opportunities Improve time management Improve community understanding Reduce Wastage Career progression Improve community standing Reduce UTI's Improve Loved ones lives Badge recognition Improve entertainment Improve my life Improved Knowledge Reduce UTI's Improve safety Improve safety Improve lives
What is a 'Community' Dementia Interpreter? includes explanation video.
Whether you work in the care industry or are a family member supporting a loved one with dementia, we believe that there must not be a barrier to being a Dementia Interpreter. People who support family members can also teach the care system so much with your lived experiences and this is why you are a vital part of the Dementia Interpreters forum and the Dementia Dictionary.
The community edition is a video e-learning platform that you can watch, learn and once completed you will be able to have access to the additional learning to eventually achieve the status of 'Level 5' Dementia Interpreter.
The only difference between a community and the professional versions is that unfortunately you watch rather than participate in the experiential side of the course. However, the content is the same and the continual learning development after the course works in exactly the same way.
The cost for the e-learning course is £24.95 +VAT (£29.94) and is available to buy by visiting www.dementiainterpreter.uk
What is a 'Professional' Dementia Interpreter? Includes explanation video.
The professional Dementia Interpreters course is the UK's first in depth experiential training for communication within a dementia setting. Delivered at your workplace or via webinar (Covid-19 times) this course places the delegates in the shoes of people who have dementia and at all stages of the disease. We take away your ability to speak, hear, see and finally move your body so that your healthy brain has to develop new ways of speaking. You will experience:
- Fear, anxiety, lack of trust, short term memory loss, anger and many emotions such as frustration.
- You will understand the challenges faced by people as they lose the capacity to speak as they normally would.
- You will understand and find empathy for everyone who has dementia as you mirror their ways to communitcate.
This experience gives you the status of Level 1 registered Dementia Interpreter and you will have continual leaning after the course to eventually be recognised as a level 5.
Interesting, scary and not to be missed, this course is a must for every person that works with people who have dementia.
The video below is the community promo film, however explains about the professional version as well.
What is the difference between a level 1 and level 5 Dementia Interpreter?
To be a level 1 Dementia Interpreter, you must have either been a delegate on the professional experiential training course or taken the community edition e-learning course. We realise that some may stop there and not want to take continual learning, some may want to move forward to level 2,3 and 4 and again end their journey there.
A level 5 Dementia Interpreter will have a passion to achieve and want to improve the lives of those they support. They have gone through each level of achievement and been actively involved in the translating the language of dementia. They will have recognition for their art and they will continually help others to achieve the highest levels.
Level 5 is a commitment above and beyond their normal careers, it is a commitment to wanting to make the care of people with dementia suitable for when we eventually need this support.
Am I qualified enough to be a Dementia Interpreter?
Whether you are a family member who is or has supported a person with dementia, a carer, support staff, nurse, professor, doctor, consultant, GP, are in the Police, Fire Service, Ambulance or work in a gym where people with dementia visit, we want you as a registered Dementia interpreter.
The whole point about being a Dementia Interpreter is that we do not focus enough on dementia communication or understand the language of dementia. We will teach you the skills required to truly understand how to improve conversations, environments, situations and practice to re-connect people to those that have lost the ability to speak or understand.
All levels, any qualifications, this is a journey to improving skills and knowledge. You do not have to be great at writing, you do not have to understand everything about dementia, but you do have to care. You have to care enough to want to change understanding for all and committed enough to share your existing knowledge while learning new skills.
Is there continual learning once you have completed level 1?
Yes, After completion of either level 1 community edition or Professional edition, the delegates will then go on a journey of continual learning to develop their skills as a Dementia Interpreter. These include 12 modules as below:
- The importance of advance planning tools.
- What not to do when communicating.
- How to communicate using food.
- When is the right and wrong time to talk?
- The impact of the environment on communication.
- Understand sounds and hearing issues and how to overcome them.
- What emotions will be exhibited by people who have dementia.
- Eyesight and why it is a barrier to a successful conversation.
- What is Aphasia and why is this such a major issue for people who have dementia.
- How can we use pictures to aid communication?
- What communication products are available and why we need to use them.
- Why is communication so important when providing personal care?
These are free modules that will be placed within their Dementia Interpreters profile 'in-box' and are delivered by both written documents and films.
What is dementia?
Dementia is known as an “umbrella term”. This is because it is not a single disease but a term that covers a wide range of specific diseases and conditions, including Alzheimer’s disease, Vascular Dementia, Frontotemporal Dementia, and more.
There are an estimated 400 different types of dementia. Due to the sheer number of different dementias and diseases covered by the term dementia the number of symptoms can be vast. Many people associated “dementia” with memory loss but it is the loss of cognitive functions. This means it covers thinking, remembering, reasoning, and behavioural abilities. Which means it affects memory but also language skills, visual perception, problem solving, self-care and management, and the ability to focus.
Symptoms of dementia
Dementia is not a disease itself. It's a collection of symptoms that result from damage to the brain caused by different diseases, such as Alzheimer's. These symptoms vary according to the part of the brain that is damaged.
Common early symptoms of dementia
Different types of dementia can affect people differently, and everyone will experience symptoms in their own way.
However, there are some common early symptoms that may appear some time before a diagnosis of dementia. These include:
- memory loss
- difficulty concentrating
- finding it hard to carry out familiar daily tasks, such as getting confused over the correct change when shopping
- struggling to follow a conversation or find the right word
- being confused about time and place
- mood changes
These symptoms are often mild and may get worse only very gradually. It's often termed "mild cognitive impairment" (MCI) as the symptoms are not severe enough to be diagnosed as dementia.
You might not notice these symptoms if you have them, and family and friends may not notice or take them seriously for some time. In some people, these symptoms will remain the same and not worsen. But some people with MCI will go on to develop dementia.
Dementia is not a natural part of ageing. This is why it's important to talk to a GP sooner rather than later if you're worried about memory problems or other symptoms.
Symptoms specific to Alzheimer's disease
The most common cause of dementia is Alzheimer's disease. Common symptoms of Alzheimer's disease include:
- memory problems, such as regularly forgetting recent events, names and faces
- asking questions repetitively
- increasing difficulties with tasks and activities that require organisation and planning
- becoming confused in unfamiliar environments
- difficulty finding the right words
- difficulty with numbers and/or handling money in shops
- becoming more withdrawn or anxious
Read more about Alzheimer's disease.
Symptoms specific to vascular dementia
Vascular dementia is the second most common cause of dementia, after Alzheimer's. Some people have both vascular dementia and Alzheimer's disease, often called "mixed dementia".
Symptoms of vascular dementia are similar to Alzheimer's disease, although memory loss may not be as obvious in the early stages.
Symptoms can sometimes develop suddenly and quickly get worse, but they can also develop gradually over many months or years.
Specific symptoms can include:
- stroke-like symptoms: including muscle weakness or temporary paralysis on one side of the body (these symptoms require urgent medical attention)
- movement problems – difficulty walking or a change in the way a person walks
- thinking problems – having difficulty with attention, planning and reasoning
- mood changes – depression and a tendency to become more emotional
Read more about vascular dementia.
Symptoms specific to dementia with Lewy bodies
Dementia with Lewy bodies has many of the symptoms of Alzheimer's disease, and people with the condition typically also experience:
- periods of being alert or drowsy, or fluctuating levels of confusion
- visual hallucinations (seeing things that are not there)
- becoming slower in their physical movements
- repeated falls and fainting
- sleep disturbances
Read more about dementia with Lewy bodies.
Symptoms specific to frontotemporal dementia
Although Alzheimer's disease is still the most common type of dementia in people under 65, a higher percentage of people in this age group may develop frontotemporal dementia than older people. Most cases are diagnosed in people aged 45-65.
Early symptoms of frontotemporal dementia may include:
- personality changes – reduced sensitivity to others' feelings, making people seem cold and unfeeling
- lack of social awareness – making inappropriate jokes or showing a lack of tact, though some people may become very withdrawn and apathetic
- language problems – difficulty finding the right words or understanding them
- becoming obsessive – such as developing fads for unusual foods, overeating and drinking
Read more about frontotemporal dementia.
Symptoms in the later stages of dementia
As dementia progresses, memory loss and difficulties with communication often become severe. In the later stages, the person is likely to neglect their own health, and require constant care and attention.
The most common symptoms of advanced dementia include:
- memory problems – people may not recognise close family and friends, or remember where they live or where they are
- communication problems – some people may eventually lose the ability to speak altogether. Using non-verbal means of communication, such as facial expressions, touch and gestures, can help
- mobility problems – many people become less able to move about unaided. Some may eventually become unable to walk and require a wheelchair or be confined to bed
- behavioural problems – a significant number of people will develop what are known as "behavioural and psychological symptoms of dementia". These may include increased agitation, depressive symptoms, anxiety, wandering, aggression, or sometimes hallucinations
- bladder incontinence is common in the later stages of dementia, and some people will also experience bowel incontinence
- appetite and weight loss problems are both common in advanced dementia. Many people have trouble eating or swallowing, and this can lead to choking, chest infections and other problems.
Recognition NHS Website: https://www.nhs.uk/conditions/dementia/symptoms/
What are the stages of dementia?
There are 3 stages of dementia:
1) Early Stage.
2) Mid Stage.
3) End Stage.
There are many different views regarding this subject dependant on where you live, individual opinion and type of dementia. An example of this are the 7 stages of dementia which as listed below:
1) No impairment.
2) Very mild decline.
3) Mild decline.
4) Moderate decline.
5) Moderately severe decline.
6) Severe decline.
7) Very severe decline.
You will see from this that different opinions will count when quoting the '7 stages' as many will argue that 'no impairment' should not be included as an answer. The dementia Dictionary has therefore decided to recognise the 3 stages of dementia as above.
If you are worried about which stage of dementia you or another person may be experiencing, please contact your personal doctor or GP.
The four most common forms of dementia
Alzheimer's disease is the most common type of dementia in the UK.
Alzheimer's disease is most common in people over the age of 65.
The risk of Alzheimer's disease and other types of dementia increases with age, affecting an estimated 1 in 3 people over the age of 65 and 1 in every 6 people over the age of 80.
But around 1 in every 20 cases of Alzheimer's disease affects people aged 40 to 65. This is called early- or young-onset Alzheimer's disease.
Causes of Alzheimer’s disease
Alzheimer's disease is thought to be caused by the abnormal build-up of proteins in and around brain cells.
One of the proteins involved is called amyloid, deposits of which form plaques around brain cells.
The other protein is called tau, deposits of which form tangles within brain cells.
Although it's not known exactly what causes this process to begin, scientists now know that it begins many years before symptoms appear.
As brain cells become affected, there's also a decrease in chemical messengers (called neurotransmitters) involved in sending messages, or signals, between brain cells.
Levels of one neurotransmitter, acetylcholine, are particularly low in the brains of people with Alzheimer's disease.
Over time, different areas of the brain shrink. The first areas usually affected are responsible for memories.
In more unusual forms of Alzheimer's disease, different areas of the brain are affected.
The first symptoms may be problems with vision or language rather than memory.
Treatments for Alzheimer’s
There's currently no cure for Alzheimer's disease, but medicines are available that can help relieve some of the symptoms.
Various other types of support are also available to help people with Alzheimer's live as independently as possible, such as making changes to your home environment so it's easier to move around and remember daily tasks.
Psychological treatments such as cognitive stimulation therapy may also be offered to help support your memory, problem solving skills and language ability.
People with Alzheimer's disease can live for several years after they start to develop symptoms. But this can vary considerably from person to person.
Alzheimer's disease is a life-limiting illness, although many people diagnosed with the condition will die from another cause.
As Alzheimer's disease is a progressive neurological condition, it can cause problems with swallowing.
This can lead to aspiration (food being inhaled into the lungs), which can cause frequent chest infections.
It's also common for people with Alzheimer's disease to eventually have difficulty eating and have a reduced appetite.
There's increasing awareness that people with Alzheimer's disease need palliative care.
This includes support for families, as well as the person with Alzheimer's.
Vascular dementia is a common type of dementia caused by reduced blood flow to the brain. It's estimated to affect around 150,000 people in the UK.
Dementia is the name for problems with mental abilities caused by gradual changes and damage in the brain. It's rare in people under 65.
Vascular dementia tends to get worse over time, although it's sometimes possible to slow it down.
Causes of vascular dementia
Vascular dementia is caused by reduced blood flow to the brain, which damages and eventually kills brain cells.
This can happen as a result of:
- narrowing and blockage of the small blood vessels inside the brain
- a single stroke, where the blood supply to part of the brain is suddenly cut off
- lots of “mini strokes” (also called transient ischaemic attacks, or TIA’s) that cause tiny but widespread damage to the brain
In many cases, these problems are linked to underlying conditions, such as high blood pressure and diabetes, and lifestyle factors, such as smoking and being overweight.
Tackling these might reduce your risk of vascular dementia in later life, although it's not yet clear exactly how much your risk of dementia can be reduced.
Treatments for vascular dementia
There's currently no cure for vascular dementia and there's no way to reverse any loss of brain cells that happened before the condition was diagnosed.
But treatment can sometimes help slow down vascular dementia.
Treatment aims to tackle the underlying cause, which may reduce the speed at which brain cells are lost.
Outlook for vascular dementia
Vascular dementia will usually get worse over time. This can happen in sudden steps, with periods in between where the symptoms do not change much, but it's difficult to predict when this will happen.
Home based help will usually be needed, and some people will eventually need care in a nursing home.
Although treatment can help, vascular dementia can significantly shorten life expectancy.
But this is highly variable, and many people live for several years with the condition, or die from some other cause.
Dementia with Lewy bodies (DLB), also known as Lewy body dementia, is one of the most common types of dementia.
Dementia is the name for problems with mental abilities caused by gradual changes and damage in the brain. It's rare in people under 65.
It tends to develop slowly and get gradually worse over several years.
Causes of dementia with Lewy bodies
Dementia with Lewy bodies is caused by clumps of protein forming inside brain cells. These abnormal deposits are called Lewy bodies.
These deposits are also found in people with Parkinson’s disease, and they build up in areas of the brain responsible for functions such as thinking, visual perception and muscle movement.
It's not clear why the deposits develop and how exactly they damage the brain. It's thought that part of the problem is the proteins affecting the brain's normal functions by interfering with signals sent between brain cells.
Dementia with Lewy bodies usually occurs in people with no family history of the condition, although there have been very rare cases that seem to run in families.
Treatments for dementia with Lewy bodies
There's currently no cure for dementia with Lewy bodies or any treatment that will slow it down.
But there are treatments that can help control some of the symptoms, possibly for several years.
Outlook for dementia with Lewy bodies
How quickly dementia with Lewy bodies gets worse varies from person to person.
Home-based help will usually be needed, and some people will eventually need care in a nursing home.
The average survival time after diagnosis is similar to that of Alzheimer's disease – around 6 to 12 years. But this is highly variable and some people live much longer than this.
Frontotemporal dementia is an uncommon type of dementia that causes problems with behaviour and language.
Dementia is the name for problems with mental abilities caused by gradual changes and damage in the brain.
Frontotemporal dementia affects the front and sides of the brain (the frontal and temporal lobes).
Dementia mostly affects people over 65, but frontotemporal dementia tends to start at a younger age. Most cases are diagnosed in people aged 45-65, although it can also affect younger or older people.
Like other types of dementia, frontotemporal dementia tends to develop slowly and get gradually worse over several years.
Causes of frontotemporal dementia
Frontotemporal dementia is caused by clumps of abnormal protein forming inside brain cells. These are thought to damage the cells and stop them working properly.
The proteins mainly build up in the frontal and temporal lobes of the brain at the front and sides. These are important for controlling language, behaviour, and the ability to plan and organise.
It's not fully understood why this happens, but there's often a genetic link. Around 1 in 8 people who get frontotemporal dementia will have relatives who were also affected by the condition.
Treatments for frontotemporal dementia
There's currently no cure for frontotemporal dementia or any treatment that will slow it down.
But there are treatments that can help control some of the symptoms, possibly for several years.
Outlook for frontotemporal dementia
How quickly frontotemporal dementia gets worse varies from person to person and is very difficult to predict.
People with the condition can become socially isolated as the illness progresses. They may not want to spend time in the company of others, or may behave in rude or insulting ways.
Home based help will usually be needed at some stage, and some people will eventually need care in a nursing home.
The average survival time after symptoms start is around 8 to 10 years. But this is highly variable and some people live much longer than this.
Risk factors and risk reduction
There are many factors which have been linked to the development of dementia. Some are risk factors, while others appear to be protective.
Risk factors are characteristics that appear to have some relationship to the development of a disease. If these risk factors are present, there is an increased chance, but not a certainty, that the disease will develop. For example, not everyone who smokes develops heart disease and not everyone with heart disease has been a smoker. However, smoking is a strong risk factor for heart disease.
Some risk factors can be modified, for example lowering blood pressure reduces the risk of a stroke. Other risk factors cannot be modified, such as age or family history.
Risk factors for dementia
The greatest risk factor for Alzheimer’s disease and other dementias is increasing age. Although age increases risk, dementia is not a normal part of ageing.
We know there are more than 20 genes which affect a person’s risk of developing dementia. The gene APOE was the first known to increases a person’s risk of developing Alzheimer’s disease, and it is still the strongest risk gene known. There are also genes which directly cause dementia, but these deterministic genes are rare – they are estimated to account for less than 1% of dementia cases, and cause young-onset forms in which symptoms usually develop before the age of 60.
Women are more likely to develop Alzheimer’s disease than men, even accounting for the fact that women live longer on average. The reasons for this are unclear.
Modifiable risk factors
Although we can’t change our genes or stop ageing, there are changes that we can make to reduce our risk of dementia, either lifestyle changes as individuals or wider changes across society. A growing body of research evidence exists for 12 potentially modifiable risk factors. We might prevent or delay up to 40% of cases of dementia, if we were able to modify all of the risk factors.
Although behaviour change is difficult and some associations might not be causal, individuals have a huge potential to reduce their dementia risk. Many of the risk factors are also shared with other non-communicable diseases such as heart disease, cancer, diabetes and chronic respiratory diseases.
Keeping active, eating well and engaging in social activities all promote good brain health, and may reduce your risk of developing dementia. Keeping your heart healthy, including by avoiding smoking and excessive alcohol consumption, can lower your risk of dementia and other diseases too.
The following is a list of risk factors for dementia along with suggestions of how to counteract them and reduce risk.
Regular physical activity is one of the best ways to reduce your risk of dementia. It’s good for your heart, circulation, weight and mental wellbeing. It is recommended that adults aim for either 150 minutes of moderate aerobic activity or 75 minutes of vigorous aerobic activity each week.
Smoking greatly increases your risk of developing dementia. You’re also increasing your risk of other conditions, including type 2 diabetes, stroke, and lung and other cancers. It’s never too late – stopping smoking later in life also reduces the risk of dementia.
Excessive alcohol consumption
Alcohol misuse and drinking more than 21 units weekly increase the risk of dementia. The harmful use of alcohol is a causal factor in more than 200 disease and injury conditions. There is a causal relationship between harmful use of alcohol and a range of mental and behavioural disorders, other noncommunicable diseases as well as injuries.
A growing amount of research evidence shows that air pollution increases the risk of dementia. Policymakers should expedite improvements in air quality, particularly in areas with high air pollution.
Head injuries are most commonly caused by car, motorcycle, and bicycle accidents; military exposures; boxing, football, hockey and other sports; firearms and violent assaults; and falls. Policymakers should use public health and other policy measures to reduce head injuries.
Infrequent social contact
It is well established that social connectedness reduces the risk of dementia. Social contact enhances cognitive reserve or encourages beneficial behaviours. There is not much evidence for any specific activity protecting against dementia. Joining a club or community group are good ways to stay socially active.
A low level of education in early life affects cognitive reserve and is one of the most significant risk factors for dementia. Policy should prioritise childhood education for all.
Particularly in mid-life, obesity is associated with an increased risk of dementia. Obesity is also associated with other NCDs and can generally be addressed through lifestyle changes such as diet and exercise.
Hypertension (high blood pressure) in mid-life increases a person’s risk of dementia, as well as causing other health problems. Medication for hypertension is the only known effective preventive medication for dementia.
Type 2 diabetes is a clear risk factor for development of future dementia. Whether any particular medication helps with this is unclear, but treatment of diabetes is important for other health reasons.
Depression is associated with dementia incidence. Depression is part of the prodrome of dementia (a symptom that occurs before the symptoms that are used for diagnosis). It is not clear to what extent dementia may be caused by depression or the reverse, and both may be the case. In any case, it is important to manage and treat depression because is associated with increased disability, physical illnesses and worse outcomes for people with dementia.
People with hearing loss have a significantly increased risk of dementia. Using hearing aids seems to reduce the risk. As hearing loss is one of the risk factors which affects the most people, addressing it could result in a large impact on the number of people developing dementia.
Numbers of people with dementia and the economic impact
Numbers of people with dementia
Someone in the world develops dementia every 3 seconds. There are over 50 million people worldwide living with dementia in 2020. This number will almost double every 20 years, reaching 82 million in 2030 and 152 million in 2050.
Demographic ageing is a worldwide process that shows the successes of improved health care over the last century. Many are now living longer and healthier lives and so the world population has a greater proportion of older people. Dementia mainly affects older people, although there is a growing awareness of cases that start before the age of 65.
There are over 9.9 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds.
Economic impact of dementia
The total estimated worldwide cost of dementia was £605 billion in 2015, which represents 1.09% of global GDP. The annual global cost of dementia is now above £740.7 billion.
This figure includes costs attributed to informal care (unpaid care provided by family and others), direct costs of social care (provided by community care professionals, and in residential home settings) and the direct costs of medical care (the costs of treating dementia and other conditions in primary and secondary care).
Direct medical care costs account for roughly 20% of global dementia costs, while direct social sector costs and informal care costs each account for roughly 40%. The relative contribution of informal care is greatest in the African regions and lowest in North America, Western Europe and some South American regions, while the reverse is true for social sector costs.
What is delerium?
Credit: Alzheimers Society UK
What is delirium?
Delirium is a worsening or change in a person’s mental state that happens suddenly, over one to two days. The person may become confused, or be more confused than usual. Or they may become sleepy and drowsy. Delirium can be distressing to the person and those around them, especially when they don’t know what’s causing these changes.
Delirium may be the first sign that someone is becoming unwell, and is one of the most common early symptoms of coronavirus infection in people with dementia.
What are the symptoms of delirium?
If someone suddenly develops any of the symptoms below or is ‘not themselves’, speak to a nurse or doctor immediately. Family, friends and carers – including professional carers – are often best placed to recognise and describe changes because they know the person best. A person with delirium may be unaware of the changes and will often be unable to describe them.
A person with delirium may:
- be easily distracted
- be less aware of where they are or what time it is (disorientation)
- suddenly not be able to do something as well as normal (for example, walking or eating)
- be unable to speak clearly or follow a conversation
- have sudden swings in mood
- have hallucinations – seeing or hearing things, often frightening, that aren’t really there
- have delusions or become paranoid – strongly believing things that are not true, for example that others are trying to physically harm them or have poisoned their food or drinks.
Symptoms of delirium often fluctuate (come and go) over the course of the day. Healthcare professionals divide delirium into three types based on the other symptoms that someone has. These three types are hyperactive, hypoactive and mixed delirium. Among older people, including those with dementia, hypoactive and mixed delirium are more common.
A person with hyperactive delirium may:
- seem restless
- be agitated (for example, with more walking about or pacing)
- resist personal care or respond aggressively to it
- seem unusually vigilant.
Someone with hyperactive delirium can easily get very distressed due to not understanding where they are or losing track of time. They may have delusions or hallucinations that carers are trying to harm them.
A person with hypoactive delirium may be:
- withdrawn, feeling lethargic and tired
- unusually sleepy
- unable to stay focused when they’re awake.
It can be easy not to notice that someone has hypoactive delirium, because they may be very quiet. The person may stop eating as much or become less mobile than usual. They may spend more time in bed.
A person with mixed delirium has symptoms of hyperactive delirium at times and symptoms of hypoactive delirium at other times. They will switch between these symptoms over the day or from one day to the next. For example, they could be very agitated at one time and then later become very drowsy.
How is delirium different from dementia?
Delirium is different from dementia. But they have similar symptoms, such as confusion, agitation and delusions. If a person has these symptoms, it can be hard for healthcare professionals who don’t know them to tell whether delirium or dementia is the cause. When a person with dementia also gets delirium they will have symptoms from both conditions at once.
There are important differences between delirium and dementia. Delirium starts suddenly (over a period of one to two days) and symptoms often also vary a lot over the day. In contrast, the symptoms of dementia come on slowly, over months or even years. So if changes or symptoms start suddenly, this suggests that the person has delirium.
Dementia with Lewy bodies is an exception. This type of dementia has many of the same symptoms as delirium (including visual hallucinations) and they can vary a lot over the day.
How is delirium diagnosed?
It’s really important that a person’s delirium is diagnosed quickly. Delirium is a serious condition and is linked to severe problems if it isn’t treated.
A healthcare professional such as a doctor or nurse will make the diagnosis. To decide if someone has delirium or not, they will consider the person’s clinical history (how their symptoms developed) and examine them. They will use a quick test known as a 4AT.
his test measures someone’s:
- alertness – whether the person is drowsy or agitated
- awareness – for example, of the current year and where they are
- attention – for example, how well the person is able to name the months of the year backwards from December
- acute change or fluctuating course – whether symptoms started suddenly or are now coming and going.
A doctor or nurse may assess someone’s mental state each day in hospital. Or they may do so when the person moves from one place to another, for example from a hospital to a care home. If they find that the person has delirium, they should tell the person’s close family.
Health or social care staff involved in their care might suspect that the person has undiagnosed dementia, but will not assess them for this until their delirium is over. If they are in doubt, they will treat the delirium first as this needs treating more urgently.
Even in hospital it can be difficult for delirium to be spotted and diagnosed. This is another reason to tell staff if you notice a change in the person you care about.
As well as diagnosing the person’s delirium, healthcare professionals will do other tests to work out what has caused the delirium. For example, they may take blood samples or possibly a chest x-ray. This is important because treating the cause of the delirium will usually help the person’s symptoms improve or go away.
Who gets delirium and why?
Delirium is common, particularly among older people in hospital. It’s usually the reaction of the brain to a separate medical problem (or several medical problems at once). Problems that can cause delirium include:
- poor nutrition
- constipation (not pooing) or urinary retention (not peeing)
- low levels of blood oxygen
- a change in medication
- abnormal metabolism (for example, low salt or blood sugar levels)
- an unfamiliar or disorientating environment.
Anyone can get delirium, but the following factors put people at higher risk:
- dementia – this is the biggest single risk factor for delirium
- aged over 65
- multiple medical conditions
- poor hearing or vision
- taking multiple medications (for example, antipsychotics, benzodiazepines and certain antidepressants)
- having already had delirium in the past.
Delirium is common in older people in hospital, because they are unwell or may have had an operation (for example, hip or heart surgery). Hospital staff should speak to the patient and family beforehand about the risk of delirium after the operation. Intensive care is another very common cause of delirium in hospital.
Delirium is also quite common in residents of care homes, or in older people with dementia at home. They are more likely to be frail, have several health conditions and be taking several medicines.
When someone goes into hospital or a care home, it’s helpful if they have a completed or updated copy of a form such as This is me with them. Care staff can refer to this for information about the person, which will be particularly helpful if they get delirium during their stay.
With the right care, some cases of delirium can be prevented. Soon after a person comes into hospital or long-term care, staff should check whether they are at risk of delirium. If they are, there are non-drug approaches to help prevent delirium that should be put in place, including those described below.
What is treatment and support for delirium?
Delirium is treated first by addressing the medical problem(s) that have caused it. For example, if the person has low blood oxygen or low blood sugar levels these will be corrected quickly. If the person has an infection they may be given antibiotics. If they are in pain, constipated or not passing urine then these will be treated.
Doctors will also review the person’s medication and stop any non-essential drugs that may be linked to delirium. Staff will make sure the person is supported to eat and drink regularly.
Delirium will usually improve if its cause is found and treated.
A supportive and calm environment can also help someone recover from delirium. Nursing staff, and visiting family and friends, can all help by:
- talking calmly to the person in short clear sentences, reassuring them as to where they are and who you are
- supporting the person with familiar objects from home, such as photographs
- making sure that any hearing aids and glasses are clean and working and that the person is wearing them
- setting up a 24-hour clock and calendar that the person can see clearly
- helping the person develop a good sleep routine, including reducing noise and dimming lights at night
- reassuring the person if they have delusions
- supporting the person to be active – to sit up or to get out of bed – as soon as they safely can
- helping the person to eat and drink regularly
- not moving the person unnecessarily – either within and between hospital wards, or into hospital if delirium is being managed at home.
Doctors won’t normally give someone medication to treat delirium, because there is very little evidence that drugs help. Drugs should be considered only if the person’s behaviour (for example, severe agitation in hyperactive delirium) poses a risk of harm to themselves or others, or if hallucinations or delusions are causing the person severe distress.
In either case a doctor may try a low dose of a sedative or an antipsychotic for a few days. (Doctors won’t give an antipsychotic to a patient with Lewy body dementia, because of the risk of side effects.)
The symptoms of delirium get better in most people over a few days to weeks, once the underlying cause is treated. However, delirium usually means a person will have to stay longer in hospital. When they do leave, their medical notes and their care and support plan should record their delirium and include what further support they will need.
Although some people recover fully, delirium can also have lasting consequences after it has been treated. These are more common in older people.
- A person may have distressing memories of delirium, sometimes linked to feelings of fear or anxiety, for months afterwards. Those close to the person should support them to talk openly about their experience and feelings. If they’ve kept a diary of the person’s time with delirium, they can use this to help the person make sense of their experience once they’re getting better.
- Delirium is linked to a faster worsening of a person’s mental abilities and function. A person with dementia may have been able do something (for example, dress themselves) before delirium but are no longer able to afterwards. This change can be permanent. Some people who have had delirium will now have additional needs which are best met by them going into a care home.
- In some cases a person will not have a diagnosis of dementia when they go into hospital, but after having delirium their symptoms will get worse and they will later be diagnosed with dementia. In these cases the delirium seems to have ‘uncovered’ the person’s dementia.
These complications are more likely after delirium but they’re not inevitable. However, they do mean it’s important to be aware of delirium and try to prevent it where possible.
What is REM (Rapid Eye movement) sleep pattern?
Sleep patterns in younger age. *REM stands for Rapid Eye Movement*
Stage 1 of non-REM sleep
When you first fall asleep, you will begin stage 1 of non-REM sleep. This is characterised by the slowing of muscle movement and the slower movement of the eyes behind the eyelid. This is the very light stage of sleep where you are may still be aware of some of the things that are happening around you. This 'light stage' of sleep means that you can usually be woken by noises, talking and other environmental issues.
Stage 2 of non-REM sleep
This is the stage where you become fully asleep and you will not be aware of the environment around you. During stage 2, the heart rate and breathing regulate, your body temperature decreases and your the eye movements may either slow or stop completely.
Stage 3 of non-REM sleep
Your brain waves will now slow down and may only have a few bursts of activity. This is a deep sleep, in stage 3 your muscles will relax and your breathing will slow. This stage of sleep is the most difficult to awaken from and if you do you may feel disoriented especially with a loud disturbance such as an alarm.
Stage 4 of non-REM sleep
Stage 4 is an even deeper sleep where the brain waves further slow and sleepers are very difficult to wake. It’s believed that tissue repair occurs during the stage of sleep and that hormones are also released to help with growth.
Stage 5: REM sleep
The final stage of sleep is REM (Rapid Eye Movement) and this is the cycle where you will dream. The eyes move rapidly behind the eyelids and breathing becomes shallow and rapid. Your blood pressure and heart rate will increase during REM sleep and the arms and legs are paralysed. Research shows that REM stage will stimulate the sections of the brain that are needed for memory and learning. REM sleep occurs approximately 90 minutes into the sleep cycle.
This information is here to help understand translations that are sleep related.
Registering for the Dementia Interpreter Forum
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Verification e mail and first log in.
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How to update your Level 1 profile.
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How to find your inbox and access further learning
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What is the difference between open and defined translations?
This video shows you the difference between open and defined translations and that open translations are not published onto the Dementia Dictionary until they are defined.
Home page and how it works.
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Interpreters need time to discuss and translate, please keep checking back with the Dementia Dictionary for updated translations.