Everyone’s journey when navigating dementia is unique, and being a member of the RAF community can add additional complexities.
This may be because you are caring for someone with dementia while away on deployment, or you are looking after family members who have served. No matter what your circumstances, below you will find the information you need to help you understand dementia, and be there to support your loved one.
1. Early signs/symptoms
It can be difficult to identify the initial signs that indicate a person may be struggling with the condition.
We believe every generation owes a debt of gratitude to the RAF and their families. They continue to protect the peace and safety we all enjoy every day. It’s our job to make sure everyone who has served in the RAF, and their loved ones, gets help and support when they need it most.
Dementia is a result of critical damage being caused to the brain over an extended period of time.
In most cases, this damage is caused by different diseases and have different symptoms that accompany them. These symptoms vary according to the part of the brain that is damaged and each person will experience the condition in a different way.
Because of this, it can be difficult to identify the initial signs that indicate a person may be struggling with the condition.
Therefore, to diagnose as early as possible, it is important to be aware of the signs and symptoms of dementia, some of which are listed below. Click the headers for more detailed information on each sign and symptom of dementia.
Trouble with memory loss can be an early symptom of dementia and often tends to involve difficulty with short-term recall.
It is common that a person with dementia is able to remember an event that occurred years ago but will struggle to confirm what they had for breakfast that morning.
The changes in memory are often subtle and can be hard to notice in the beginning, before becoming more frequent as time passes. Although they may only misremember trivial things such as where they left a particular item or why they entered a room, leaving a door unlocked or the oven on can cause more serious issues. This is an important aspect to consider as the symptoms of dementia progress over time.
Somebody who suffers from dementia may begin to struggle to keep up to pace in a conversation and forget what is being discussed.
This is related to the slowly decreasing short-term recall associated with memory loss. Although the person may be coherent in what they are saying, as the conversation goes on, they may lose their line of reasoning or forget what their original point was.
A result of this is the person becoming prone to repetition in what they are saying, as they may not remember that they have already made a particular point.
As a carer, it is important to try to facilitate the communication skills of somebody with dementia as much as possible. Occasional hints or recaps of what they are talking about during a conversation can help them to keep their thoughts on track and boost their self-esteem when communicating.
A common symptom of dementia is the person becoming confused when dealing with everyday tasks or their normal routine. This is because their memory, thinking and judgement may begin to falter, causing confusion over events that would usually be commonplace in their everyday life.
These include occurrences such as struggling to remember faces, finding the right words and interacting with people normally. As well as confusion, these shortcomings can often lead to fear and frustration within the individual as they may not be able to understand why this is happening.
To help a person with dementia as much as possible, it is important to offer any significant aid that may help them to remain stable or regain their bearings. For example, if they are struggling to recognise somebody, it may be useful to recall an event that involves them both together. In doing so, their long-term memory will be triggered, and they may be able to remember who the person is without recognising them physically.
A change in mood is common within people who suffer from dementia. This can occur in a range of different ways and can differ as time goes on.
Although a friend or carer of somebody with dementia may notice this change in mood, it isn’t always easy for the person themselves to recognise it. It is important, at this stage, to gauge the person’s mood and ensure that they are receiving the support required.
As well as a change in mood, it is also typical for somebody suffering from dementia to have a shift in personality. This is due to the person’s judgement changing due to the dementia. One typical example of this personality change seen in dementia is a shift from being shy to outgoing.
Again, it is important to gauge these shifts and be aware of the mental state of the person with dementia.
A shift in a person’s ability to carry out everyday tasks can be an early indication that they may have dementia.
Although they will most likely still be able to complete straightforward tasks such as taking the bins out or washing clothes, more complicated tasks such as paying household bills, or completing a puzzle may cause them problems.
In addition to this, they may also struggle to learn new skills or adapt to any changes in routine. As previously mentioned, this decline in ability can often be scary and frustrating for somebody struggling from dementia. Therefore, it is important for a carer to remain patient and offer any support that they feel will make the person comfortable and safe as these changes occur.
Apathy is another condition that is common in people suffering from dementia. This usually occurs in the early stages of dementia and may result in the person losing interest in the hobbies or activities that they usually enjoy.
This is due the damage inflicted on the part of the brain that controls motivation, planning and sequencing of tasks.
If this occurs, it is important to remember that the person with dementia is not consciously deciding to turn away from their interests and that this should not be inferred as them giving up. As a carer, it is helpful to prevent the person from becoming withdrawn by building up their confidence in themselves, which has been found to hinder rates of apathy.
If you think someone you know might be experiencing the symptoms of dementia, it could be worth starting the diagnosis process.
Having the dementia discussion
When you think that someone has dementia, broaching a conversation with them to voice your concerns is not easy. you may be worried about hurting your relationship with them, or upsetting them.
However, it is important to broach the subject early, rather than later, as it is more helpful for everyone involved and the cause of the symptoms can be identified.
Becoming forgetful does not necessarily mean that someone has dementia. It can also be an indication of several other things, such as stress.
There is not one approach to having a conversation as everyone reacts in different ways. It is natural for the other person to become defensive, angry or be in denial. You should always try to see the situation from their point of view and recognise how difficult it can be for them to admit that there is anything wrong.
How to initiate the discussion
It is best to plan when you have the conversation with your loved one, ensuring that you are both comfortable and the environment should be familiar and unthreatening alongside having no distractions or interruptions.
It can be beneficial to plan what you are going to say in advance to help you get your point across in a clear and succinct way. You should always reassure them first that you are only having the conversation because you love and care for them, and you have their best interests at heart.
It is also important to have a calm and caring tone of voice throughout and you should not appear confrontational.
It can be a good idea to state what you are worried about and ask whether they agree with you. Do not argue with anything that they say but you can provide specific examples of when you have felt concerned to illustrate where you are coming from.
You should be prepared for them to have a range of reactions to the conversation as moods can vary massively in individuals with dementia and it may be best to leave the discussion to a later date if they become particularly angry or distressed.
It can be helpful to note down any symptoms or experiences that they discuss with you that you had not noticed so that they can be highlighted in future discussions with a medical professional.
At the end of the conversation, a plan of action should be created between both parties. You should reassure them that they are not alone and that you will be there for them every step of the way.
If their memory is poor you may need to provide gentle reminders of the conversation and any medical appointments made.
Sometimes a loved one may refuse to have the conversation or get help themselves. If this is the case, it may be beneficial for you to seek medical help for them yourself. One way to do this could be to highlight your concerns when accompanying them to routine GP appointments, such as flu jabs. It may also be the case that the person does not actually have dementia and so you should avoid self-prescribing them for the wellbeing of everyone involved.
The Diagnosis Process
If you are worried that somebody you know may have dementia, it is a good idea to consult a General Practitioner (GP).
It is important to seek the help of a professional as the symptoms of dementia can be similar to other health conditions. Without consulting a GP, the condition could be incorrectly diagnosed.
For example, somebody who is experiencing memory problems may assume that they have dementia without seeking a professional opinion. However, memory problems can also be caused by other conditions such as depression, anxiety, delirium, thyroid problems etc. Therefore, it is best to consult a GP in order to avoid lost time and negative future circumstances.
Not wanting to contact a GP
It is a common occurrence that the person who may have dementia does not want to contact the GP at all. There are a variety of reasons why the person may feel this way, which will depend on the personality of the individual and their underlying motivations.
Typically, the person will be feeling frightened of getting a diagnosis and may think that they will lose their independence. In some cases, the person may not even understand the concerns about their condition due to failing memory and changes in their behaviour.
Therefore, it is important to reassure the person and highlight that their symptoms may be due to another potentially treatable condition. This could help them become more willing to visit their GP.
If the person still refuses consult a GP, it may be useful to contact the appropriate surgery directly and explain the situation. The GP may be able to conduct a home visit to speak to the person in question, which can be considered a more comfortable and safe location for diagnosis.
It is important to consider the possibility that the GP may not be able to discuss confidential information with you, depending on the preference of the person in question.
What to expect
After the person has agreed to consult a GP regarding their condition, there are various steps that need to be undertaken to arrive at the diagnosis.
Initially, the GP will gather as much information regarding the person’s condition as possible. In order to do so, the person may be asked to complete some blood tests, receive a physical examination and answer a range of questions. These questions are designed to give an overview of the person’s wellbeing and may consist of the following:
When did the symptoms start?
How are you feeling physically?
How are you feeling mentally?
Day-to-day, have you noticed any differences in your health/wellbeing?
It may be helpful to have a family member or a close friend present during this process, as they will be able to give an account of the changes that they have noticed and how this affects the person in question.
If deemed necessary, the GP may also ask the person to complete a brain scan or MRI to obtain a more in-depth understanding of their neurological state. The GP may also wish to test the person’s memory and cognitive ability. They will do so by asking the person to answer straightforward questions and to complete simple tasks, such as the following:
What day is it today? Which month are we in? What is the year?
Name some common items that you might find in a kitchen?
Tests of repetition to analyse concentration and short term memory.
Asking the person to complete a drawing.
Given the nature of these questions and tasks, the person in question may become stressed or upset if they are struggling. Therefore, it is important to remain supportive throughout the examinations and continue to offer reassurance to the person throughout.
Once diagnosed, if the GP feels it necessary to do so, the person in question will be referred to a memory specialist.
This process will be like consulting a GP, in that you will be asked to visit the specialist and they will need to conduct tests and retrieve specific information.
Again, it may be possible to arrange a home visit from the specialist if this would make the person in question feel more comfortable.
Once acquainted, the specialist will take a detailed account of the person’s medical history as well as the medical history of their family members. As previously mentioned, to ensure that the person feels safe and relaxed, it is helpful to have a family member or close friend with them at this appointment.
As well as giving social support, they will also be able to offer any relevant information to the specialist that the person may struggle communicating themselves.
The specialist will also conduct assessments involving the person’s cognitive abilities. It is important to note that these tests may be more difficult than the ones completed with the GP, which may cause the person to become frustrated or upset. It is important to offer support if the person shows signs of distress.
These assessments usually consist of tests of attention, memory, verbal fluency and language, as well as testing their visuospatial abilities by asking the person to copy diagrams or draw a clock.
In addition, they will ask questions about the person’s abilities with everyday tasks such as shopping, housework, driving, and self-care, such as washing and dressing.
This process may take an extended amount of time to complete, as the specialist will want to gather as much information as possible for their evaluation. Once they feel satisfied with the analysis, they will be able to explain the person’s condition in more detail and discuss various possible treatments and future arrangements.
For more information on the diagnosis process please visit:
Support for Dementia
Although, presently, there is not a cure for dementia, there are a variety of treatments that can be used to help with the symptoms of the disease. Depending on the type of treatment, they can be administered or recommended at specific points in the dementia journey when the treatment is able to have the most positive impact on the person.
As with most diseases, there is a variety of medication available that can temporarily reduce the symptoms of dementia.
Although medication is primarily administered to help to prevent further neurological damage taking place, there are also medicines available that can help with changes in behaviour.
For example, medication may be recommended if the person with dementia is showing persistent aggression or extreme distress.
It can be helpful to talk to your GP to gain a further understanding of the medication available.
In addition to medicine, there are a variety of cognition-based remedies that can engage the community and help the person with dementia to live more comfortably.
One example of this is ‘cognitive stimulation therapy’, which involves group activities and exercises which have been designed to improve the person’s memory, problem-solving skills and language ability.
These improvements can help to make the person feel more confident in their ability and will encourage them to continue to engage.
There is also a practice known as ‘cognitive rehabilitation’, which is completed with a trained professional (i.e. an occupational therapist) and a close friend or family member.
The aim of the sessions is to achieve modest personal goals, such as doing the washing or learning to use a mobile phone. Completing these tasks enables the more functional parts of the person’s brain to help the less functional parts. It has been reported that cognitive rehabilitation can help a person to cope better in the early stages of dementia.
Dementia is often seen as a disease that impacts the memory, but the word ‘Dementia’ is an umbrella term for a range of progressive conditions that affect the brain.
Symptoms vary according to the part of the brain that is affected and each person will experience the condition differently so whilst common symptoms are memory loss and confusion, dementia can also impact comprehension, mobility, speech and our senses.
Communicating with a loved one with dementia can sometimes be distressing. Their speech is often negatively impacted, worsening over time, and their receptive communication may be affected. Their ability to reason can also decline and their rational ideas might become distorted, resulting in irritation.
Being aware of the unique changes someone with dementia experiences can guide you in altering the way you communicate with them to meet their needs.
Dementia and the senses
Our senses shape how we see, interact with, and understand the world around us. When our senses are affected by dementia it can change how we relate to the world and other people.
Those around the person with dementia will see the signs that they are having issues with memory or mobility, but they may not be aware of the impact that dementia is having on the persons senses.
This can result in the person with dementia appearing confused, reacting in unusual ways or displaying behaviours that may be difficult for other people to understand.
Sight can be affected in many ways by dementia. This includes loss of peripheral vision, motion blindness, depth perception, shape recognition, colour, contrast and tone.
Our brain tries to make sense of the things it sees – like seeing pictures in clouds. Dementia can impact perception and a person’s ability to recognise what is in front of them.
The brain will try to understand what the eyes are seeing and may for instance see a black mat as a hole.
The person will then try to step across or go around the mat or, if it is too big to step over, they may refuse to cross it. To others, who are just seeing a mat, this may appear to be strange behaviour, but if we understand it from the point of view of the person with dementia it becomes very logical behaviour. Who would deliberately step into a hole?
Vision issues with colour, contrast and peripheral vision can also impact mobility and how people walk and behave. As they will find it harder to see where they are going, they are more likely to start shuffling rather than walking normally. They may start looking at the floor more when walking and not be as aware of things around them. They may also be more likely to bump into things or have a fall.
If depth perception is impacted the person may be appear to become clumsier. They may also struggle with stairs. The person may also find it more difficult to identity, for instance, where the actual seat is on a chair or have difficulties getting in and out of a vehicle.
Many of these signs and symptoms of dementia may appear to be mobility issues rather than difficulties with vision.
It is important to have good lighting in all areas of the house. Warm lights and soft shadows may add to the ambience of a space, but they also make it harder to see and identify shape, contrast, colour and tone.
Having colourful cushions on furniture and a bright coloured on the toilet seat can also help to ensure that they stand out and are easier to identify.
Mirrors can be confusing as they make it look like there are additional rooms and reflections can make it appear that there are others in the room.
Making a home dementia friendly doesn’t have to be difficult – good lighting, cushions, using colour to highlight light switches, and coloured crockery and cutlery can all help.
Smell is one of our very first senses to develop.
Sometimes with dementia one of the early things that people can lose is their ability to recognise: chemical smells, body odours, food that is off or the smell of burning.
This can result in the person not being able to tell that they, or their clothes, need washing, and they may start wearing the same clothes for many days.
Consider laying out clean clothes the night before for the person to wear.
It is also important to check smoke alarms regularly and be aware of chemicals in the house and where they are stored.
Taste can often change with dementia. For many people food starts to taste increasingly bitter. To counteract this, the person may prefer foods that are spicy or sweet.
Consider cooking vegetables in honey or just adding a little sugar to stews. If the person will only eat puddings try encouraging them to have desserts with fruit.
Many people receive physical comfort through contact on the palm of their hands. Holding hands and maximising the amount of palm to palm contact you give to a person living with dementia can enable that person to connect with you and feel safe therefore opening channels of communication.
Unexpected touch will make us all react. Touch and movement are closely connected, for example if we feel something brush against us or a fly lands on our arm we will instinctively move or brush it away.
Touching someone to get their attention, when they don’t know you are there, may mean the person will react suddenly and unexpectedly. Ensure the person is aware of you approaching them; try to approach from the front and use their name to get their attention before touching them.
Sometime dementia can cause hypersensitivity to touch so even the lightest touch can feel painful and clothes may feel itchy or uncomfortable.
Hearing is not just about our physical ability to hear sounds; it is also a vital part of our comprehension and understanding. If hearing is impacted by dementia this can result in:
The person requiring longer to process what is being said
There being a difference between the words being said and the words the person hears
Trouble finding the right word
Repeat words and phrases
Behave in ways others find odd, because they are trying to communicate what they can no longer say with words
Use substitutes for words
Fluent speech that has jumbled words and grammar
Listening and communication can take a lot of concentration and focus and therefore as these become more challenging, the person may start to withdraw from conversations and interactions. This can especially be the case in group situations, where several people are speaking, or where there is background noise.
The person with dementia may prefer 1 to 1 conversation. They may also be happier with shorter conversations. Many find family gatherings challenging.
Remember: the person with dementia may not be able to explain that something is wrong or even recognise there is. It is also important make sure people are wearing their glasses and using any hearing aids, and to ensure regular checks on hearing and sight to ensure there is no physical deterioration in vision or hearing.
Communicating with a loved one with dementia
It can be beneficial to put yourself in the shoes of the person with dementia, thinking about how they may be feeling. Remember, they may treat every conversation you have with them as the first and often cannot follow on from previous conversations.
It is recommended that an element of trial and error is used to discover which are best for the individual. ‘This is Me’ is a useful tool filled out by the diagnosed individual to reveal their preferences in communication and other areas of everyday life. It can help with tailoring communication techniques to suit them.
Below you can find some communication tips which are both verbal and non-verbal as well as advice for having a conversation on the phone. Remember, some tips may apply over multiple scenarios, and you should note which work best for the individual.
Other difficulties with communicating you might experience
A lack of understanding both from both parties
Losing the thread of the conversation
Conversations which lack sense
Struggling to find the words
Sensory impairments (e.g., sight or hearing)
Using substitutes for words
These can all cause frustration and confusion for both parties; however, there are techniques that can help.
Before beginning a conversation with your loved one, it is important you find a well-lit and quiet environment.
You should always approach them from the front to avoid shocking them and this allows them to process who you are. Use their name to ensure their attention and get down on their level but respect their personal space.
It is also beneficial to gauge whether there is a time of day where they are more able to communicate (for example, in the morning) and you should make the most of this.
Lastly, ensure that their other needs are met, such as making sure they are not hungry or uncomfortable.
In the later stages of dementia your loved one may find it increasingly difficult to verbally communicate or may stop altogether.
Therefore, it may be necessary to rely on non-verbal communication to ensure they are not socially isolated. Below are some suggestions for how to enhance your non-verbal communication with your loved one:
Gentle physical contact (e.g., touching their hand) to provide reassurance and make sure they feel comfortable and safe.
Body language indicates how someone is feeling. Use open or gentle gestures as well as kind and recognisable facial expressions. Do not use hostile movements which may cause distress or confusion. Also, be aware of their body language as it often provides a subconscious insight into what they are feeling (for example, hunching their shoulders to show they are anxious).
Visual prompts are beneficial, for example, pointing at cue cards with pictures of meals on to show what they would like to eat or indicate whether they are hungry.
Music is increasingly used to allow someone to express their mood or wants as well as enabling them to tell their personal history or engage in group activities.
Some may suffer from sight loss in addition to dementia which eliminates the beneficial use of visual cues and may leave them feeling more disoriented as well as experiencing more mobility issues or falls.
When helping them it is important to articulate exactly what you are going to do. For example, informing them you are going to begin brushing their hair.
Reference points are also key, for example, ‘a large glass of water on the table to your right’.
Furthermore, music and audio are especially useful. Click here to find music and audio resources provided by the Alzheimer’s Society that can help you communicate with a loved one experiencing both dementia and sight loss.
When it is not possible for you to communicate with your loved one in person, you may wish to do so on the phone.
This can create additional challenges as they are not able to see your body language or facial expressions to infer meaning and you cannot see theirs.
You should be conscious of background noise as this can distract the individual and ensure that the conversation is still relaxed and steady.
You will need to communicate that you care through your tone of voice, keeping it gentle and calm, and by continuing to talk to them.
You should let them lead the conversation to start and not try to switch topics too soon.
Also be aware, just like communicating face-to-face that they will find wording more difficult and may have limited speech. You should keep your sentences and words short to allow them to follow, and you must be a good listener, giving them time to think and then respond.
It is a good idea to tell them happy and funny stories that might insight interest or spark their memories.
You can also ask them to share their stories from the past, for example a previous holiday, as people with dementia often find these easier to recall.
Asking about the weather is also a good tip for keeping the conversation going, however, you must pay attention to their tone of voice and responses to look for signs of fatigue. Communicating at length can be tiring for them, so calling them little and often is better.
Always finish your conversation on a positive note and reassure them that you look forward to speaking with them again.
Care at home
When an illness can’t be cured, palliative care aims to make a person as comfortable as possible by managing their pain and other distressing symptoms.
Good palliative care focuses on the person, not the disease. It is not just about supporting someone in the last months, days, and hours of life, but about enhancing the quality of life at every stage of the disease process from diagnosis onwards.
Dementia is a progressive disease, so it is important to talk about the future.
Initiating the conversation can be difficult but understanding the person’s wishes will make it easier if decisions have to be made on the person’s behalf.
Additionally, it is important to be aware that there may be legal issues later if certain measures have not been put in place.
Lasting power of attorney gives a named individual or individuals the power to make decisions on behalf of an incapacitated person regarding their health, welfare, or finance. LPA’s can only be appointed when the person has capacity to consent and can only be used when the person loses the ability to consent.
Advance decision to refuse treatment is a legal document which allows the person who has made it refuse advance specific medical treatments or procedures in advance.
Advance statement gives the person the option to make general statements about their priorities and preferences for the future, rather than refusing certain treatments. It is not legally binding but should be considered when making decisions.
Independent living in the home
There are many devices available to help a person live in their home and as independently as possible for as long as possible.
Some people can be resistant to using aids or having adaptations around the home but not doing so will make it more likely the person will start to find daily tasks more challenging, and more likely that they will be unable to live independently earlier.
There are many devices to help with everyday living. For example, memory aids, assistive tools like calendar clocks, high tech solutions to monitor medication, or satellite navigation systems to find someone that has gone missing.
Much assisted technology can really help carers and can often be linked to computers or smart phones through apps to enable the carers to check the person is okay from a distance.
This includes: trackers, heat sensors, gas and flood sensors, mats to tell if someone is getting up at night or leaving the house, and doorbell cameras.
Increased care in the home
There are a wide range of social care services available that can help someone stay in their own home and assist the carer.
A cared for and carers assessment will help understand needs and payment options.
Some of the services available include:
Domiciliary or home care and personal assistants
Meals delivered to your home
Day care attendance and respite care
Live-in care services
Direct payment support
Information, brokerage, and advice services
Home adaptations and specialist disability equipment
Community alarms and other types of assistive technology.
Sheltered housing (supported living)
Respite care can also be a useful way to support someone living at home and can provide a break for the carer. These services can be regular, temporary, or one off, and include:
In the home support to allow time for the carer to do other activities, or have a break
Day care centres
Respite Care can also be provided in a Residential care setting. This may be temporary to provide a break for the carer, or whilst the carer is on holiday, or may be used an opportunity for the cared for person to experience the care provider. It could also possible be a stepping stone to long-term care, or to allow space and time for an assessment of needs.
A care and carers assessment will help to understand the needs and payment options.
The decision to place a person in long-term care often comes after a long period of time caring for them.
It maybe that the level of care the person needs to keep them safe can no longer be provided in their own home
Many people may feel guilty when a person they care has to move out of their own home but residential care can be the best option to ensure the person with dementia gets the support they need.
Choosing a residential or nursing home to provide long-term care can be daunting and fraught with emotion. This checklist covers some of the things you might find it helpful to consider:
Look at Care Quality Commission Reports (CQC)
Visit the home and talk to the staff, residents, and other families
Visit more than once at different times of day
Ask to see certificates of staff dementia training and check the level of training provided
Ask staff questions to gauge their knowledge and understanding of dementia
Find out how the home ensures choice for residents and that personal preferences are met
Check Care plans are in place
Observe how the staff interact with residents
Find out how the home and staff support residents to be as independent as possible
Does the home allow residents to ‘help’ the staff e.g. by setting out activities etc.
Consider is there a programme of activities and are they designed to pass the time or also help with a feeling of belonging and value
Check any visiting restrictions