Living with Dementia can be hard for anyone involved.
Whether you are living with it or caring for someone suffering from it.
There are currently an estimated 850,000 people living with Dementia in the UK.
This number is expected to continue growing over the next few decades.
Diagnosing Dementia early and helping your loved ones to live with the illness comfortably can really help to improve their morale.
This guide will help you get a better understanding on what Dementia is, how to live with it and how to care for someone coping with it.
Chapter 1: What is Dementia?
One in 14 people aged over 65 in the UK have a form of Dementia.
The actual word ‘Dementia’ describes a set of symptoms that can include memory loss and difficulty thinking, problem-solving or language.
Changes will begin to slowly develop in the early stages of Dementia but then lead on to more severe symptoms which can have a serious effect on everyday life.
What is Dementia?
Dementia refers to a group of symptoms that have an affect on the brain, including the recognition, memory, language and planning which deteriorate across time.
Dementia is an umbrella term for a range of different types, including the most commonly known type; Alzheimer’s.
The brain is made up of different nerve cells otherwise known as neurons, that communicate together to send messages.
Dementia affects the nerve cells in the brain, causing the messages to be affected from sending and therefore affects the body from functioning normally.
Unfortunately, each person is affected by Dementia differently, so it is very rare that two people will have the same effects or symptoms.
Dementia can affect a person at any age in their lifetime but it is more commonly diagnosed in people over the age of 65.
Types of Dementia
There are a number of different types of Dementia; Alzheimer’s, Vascular Dementia, Dementia with lewy bodies, Frontotemporal Dementia and other types of Dementia.
Alzheimer’s disease is the most common type of Dementia, affecting the memory first and later progresses to affect other areas of the cognitive abilities, including speech, ability to reason and movement.
It is a physical condition that can cause changes in the structure of the brain due to buildup of plaques and tangles, resulting in a shortage of important chemicals in the brain that help with the general transmission of messages.
Medication is available to slow the progression of this type of Dementia, however as with any Dementia type, there is yet to be a cure or prevention.
Vascular or Multi-Infarct Dementia is the type of Dementia that can cause problems in the supply of blood to the brain which often results in a stroke, where a small area of the brain is irreversibly damaged.
This type of Dementia is often sudden and symptoms usually depend on what area of the brain is affected.
However unlike other forms of Dementia, the memory and other cognitive functions are usually restored.
This type of Dementia is the second most common type and common symptoms can affect language, reading, writing and communication issues.
Dementia with Lewy bodies leads to a decline in cognitive ability, causes hallucinations, restrictive movements and delusions.
This is another progressive condition of Dementia that affects movement and motor control.
A person with Dementia with Lewy bodies might be more prone to falls, have tremors, have trouble swallowing, shuffle when they walk, experience disruption during sleep patterns due to intense dreams or nightmares or they could have visual or auditory hallucinations due to neuron damage.
Frontotemporal Dementias can affect personality and speech but does not affect the memory.
This form of Dementia is a progressive condition and tends to affect younger people between the ages of 45 to 65 years and can also be very difficult to identify.
Eating patterns can also be affected.
An individual may suddenly begin to binge on food, especially sweet foods.
This form of Dementia can sometimes lead to confusion, depression, stress, anxiety, psychosis or obsessive compulsive disorder.
Less common types of Dementia can include;
- Parkinson’s Disease Dementia
- Huntington’s Disease
- Creutzfeldt-Jakob Disease and other prion diseases
- Dementia in HIV/AIDS
- Traumatic Brain Injury
- Wernicke-Korsakoff syndrome (including Dementia from alcohol abuse)
Stages of Dementia
Stages of Dementia refers to how far a person’s Dementia has progressed, defining a person’s disease stage can help to determine the best treatment and approach to their care.
Health professionals often refer to Dementia in stages and there are around seven stages within each type of Dementia.
There are multiple different scales for Dementia stages, based upon the type of Dementia you have.
1.Global Deterioration Scale for Assessment of Primary Degenerative Dementia (GDS)
This is the most common Dementia scale and is often referred to as GDS for short.
This scale separates the Dementia into seven different stages based on the amount of cognitive decline in the brain and is usually associated with Alzheimer’s disease.
|Diagnosis||Stage||Signs and Symptoms|
|No Dementia||Stage 1: No Cognitive Decline||This stage, the person functions normally, has no memory loss and is generally mentally healthy. This stage is associated with someone not considered to have Dementia yet.|
|No Dementia||Stage 2: Very Mild Cognitive Decline||This stage would describe a person to have normal forgetfulness associated with ageing. For example, getting people’s names wrong or forgetting the whereabouts of familiar objects. A person in this stage of Dementia is usually unaware of these symptoms at this stage.|
|No Dementia||Stage 3: Mild Cognitive Decline||This stage is a more developed version of stage 2, where the person has increased forgetfulness, more difficulty in concentrating and they have decreased work performance. This stage can result in a person getting lost more frequently or having more difficulty in finding the correct words when speaking. At this stage it is more clear that a person has Dementia and is easier to detect cognitive problems during a patient exam, despite the fact they are usually in denial about their symptoms.
Average duration: 7 years before onset of Dementia
|Early-Stage||Stage 4: Moderate Cognitive Decline||Stage 4 Dementia includes further difficulty in concentrating, a decreased memory of recent events and difficulty with managing finances or travelling alone to new locations. This stage can also affect them completing more complex tasks efficiently. They can also be in denial about their symptoms. This stage can cause issues when associating with family or friends due to finding social scenarios more difficult. At this stage it is very clear to detect cognitive problems.
Average duration: 2 years
|Mid-Stage||Stage 5: Moderately Severe Cognitive Decline||This stage can give a person major memory deficiencies and will mean they require more assistance to complete their everyday activities like getting dressed and washing. Memory loss becomes a lot more severe in stage 5 and may also include major relevant aspects of their lives, for example forgetting their phone number or address and the time of day.
Average duration: 1.5 years
|Mid-Stage||Stage 6: Severe Cognitive Decline (Middle Dementia)||Stage 6 Dementia can require a person to require extensive assistance in carrying out their everyday activities. The person can start to forget names of close family members and have little memory of recent events, even forgetting some details of their earlier life. They will have difficulty counting down from 10 and completing tasks. Individuals can suffer from incontinence as well. Their overall personality will also change, such as having delusions, compulsions or anxiety.
Average duration: 2.5 years
|Late-Stage||Stage 7: Very Severe Cognitive Decline (Late Dementia)||Stage 7 Dementia can seriously affect a person’s ability to even speak or communicate and they will require assistance with most activities. They will also often lose psychomotor skills which can include the ability to walk.
Average duration 2.5 years.
2.Functional Assessment Staging (Fast)
This is the second scale, also broken down into seven stages but is based on the level of functioning and daily activities.
|Stage||Signs and Symptoms|
|Stage 1: Normal Adult||Stage 1 shows no functional decline|
|Stage 2: Normal Older Adult||Stage 2 shows they have personal awareness of some functional decline|
|Stage 3: Early Alzheimer’s Disease||Stage 3 shows noticeable deficits in demanding job situations|
|Stage 4: Mild Alzheimer’s||Stage 4 shows they require some assistance in completing complicated tasks such as handling finances|
|Stage 5: Moderate Alzheimer’s||Stage 5 is when a person will require assistance in choosing clothing|
|Stage 6: Moderately Severe Alzheimer’s||Stage 6 is where a person will require assistance dressing, bathing and going to the toilet. A person in stage 6 will experience urinary and fecal incontinence|
|Stage 7: Severe Alzheimer’s||Stage 7 will cause a person to have a decline in speech ability and progressive loss of abilities to walk, sit up, smile and hold their head up|
3.Clinical Dementia Rating (CDR)
The CDR scale uses five stages based on a person’s cognitive (thinking) abilities and their ability to function.
This scale is commonly used in Dementia research and can be used on a person with suspected Dementia to evaluate six key areas; memory, orientation, judgement and problem solving, community affairs, home and hobbies and personal care.
|Stage||Signs and Symptoms|
|Stage 1: CDR-0||No Dementia|
|Stage 2: CDR-0.5 – Mild||Mild memory problems are associated with someone in this stage but not consistent and they may appear to have some difficulties with time and problem solving.|
|Stage 3: CDR-1 – Mild||Memory problems can be more moderate when associated with more recent events and can affect everyday activities. There will be signs of more difficulty with problem solving, will struggle to function independently.|
|Stage 4: CDR-2 – Moderate||Memory loss will be more profound and they will be more disorientated with knowing the time and place. A person in this stage can have poor judgement and have difficulty handling problems and have little or no independence at home.|
|Stage 5: CDR-3 – Severe||This stage will affect a person’s memory loss severely, they will be completely disorientated with respect to time and place, have no judgement and no problem solving abilities. They will require assistance with all everyday activities and most personal care.|
Chapter 2: Diagnosing Dementia
How To Spot The Signs of Dementia and How To Diagnose it
Most people will begin to notice that their thinking is getting slower and their memory is becoming more forgetful than usual as they get older.
It is important to know the difference between a regular ageing memory problem, stress, depression or other physical illnesses against Dementia.
Spotting the signs of a memory problem
As we age, it is quite natural to begin to forget things.
However forgetting more frequently than usual may be a sign that you need to look into the issue further.
There are a range of typically normal age-related memory issues that should not cause real concern.
It is important to know the differences between a typical ageing attribute or a more complex issue such as Dementia. Particular everyday memory issues can include;
Typical causes of a memory problem can include:
- Forgetting appointments or names on occasion but remembering them later on
- Making an infrequent mistake when managing or paying household bills
- Being slower or unwilling to grasp new technology such as mobile phones or computers
- Getting the date incorrect but remembering later on
- Struggling to the find the right word for something when speaking
- Misplacing items from time to time but eventually finding them
- Finding it difficult managing work, family and social obligations
- Developing a strict routine and habits and becoming irritated if these are interrupted in any way
Stress, depression or anxiety:
These conditions can cause memory problems and then be made worse from poorer concentration or a lack of interest in what is going on around them.
Sleep is important to help keep your mind feeling physically healthy, without sleep the brain becomes slower and this can cause your memory to be impaired.
This can affect brain power.
A fall or a car accident which has damaged your brain may result in sudden memory loss where people may not be able able to remember things immediately before or after the incident took place.
Memory loss and the decline of your usual mental ability can be symptoms of conditions such as Alzheimers or Parkinsons, and is one of the most common reasons for memory loss in older people.
Common symptoms of Dementia
In early stages of Dementia, a person who is suffering with certain symptoms will often be in denial about having them.
This is why it is important to know the symptoms of Dementia to ensure you can get your loved one the help they need.
There are certain symptoms of Dementia which can be common in getting older and don’t always then lead on to Dementia.
But you shouldn’t need to worry if you are under the age of 65 years old, as Dementia usually only affects people over the age of 65.
If you find you or your loved one is struggling to recall certain things that happened a while ago but have no issues in remembering recent events.
This is more likely to be due to ageing as Dementia usually begins with short-term memory loss. If your loved one is experiencing memory loss but is aware of the memory lapses then this too is likely down to ageing.
As typically someone with Dementia will be unaware or in denial about memory lapses.
Symptoms that are more a cause for concern can include the following:
- Difficulty remembering things that affect daily life
- Difficulty in remembering recent events combined with no issues remembering earlier life
- Forgetting names of friends or family members or everyday objects
- Finding it hard to follow conversations or programmes on television
- Losing the thread of what you are saying
- Leaving things in unusual places, such as putting the toothbrush in the fridge or your keys in the bathroom cabinet
- Having problems thinking or reasoning
- Feeling anxious, depressed or angry
- Getting confused in a familiar environment or losing your way on a journey you often make
- Other people are commenting on the forgetfulness
If you are concerned about any of the symptoms mentioned here try your best to get them to see a doctor.
It may not be easy, so try using another reason to get them to the doctors. For instance; a prescription they regularly use. You can then discuss the issue with the doctor while you are there.
Causes of Dementia
As previously mentioned there are certain events that can cause the development of a memory problem, such as having a fall or stroke.
Dementia is more often than not a result of a biological malfunction or physical event in the body. Rather than an accident or trauma.
Neurodegenerative Causes of Dementia:
Neurodegenerative is the most common biological cause of Dementia and often leads to the most common type of Dementia, Alzheimer’s disease.
It is the process where the neurons (brain cells) break down and die through drying out and therefore causes permanent and progressive decrease in the mental and physical functionalities across time.
Common types of Dementia that can result from Neurodegenerative Dementia can include: Alzheimer’s Disease, Dementia from Lewy Bodies, Frontotemporal Dementia, Parkinson’s Disease or Huntington’s Disease.
Cerebrovascular Causes of Dementia:
This is where damage to the blood vessels in the brain occur, and is a common biological cause of Dementia.
It can include strokes and/or narrowing of the blood vessels that are supplying the brain.
Localised areas of the brain are destroyed due to not getting enough blood supply.
The type of Dementia that can occur from Cerebrovascular disease is vascular or multi-infarct Dementia.
Infections can lead to Dementia, including viruses and bacteria. Parasites can also destroy brain cells and therefore can lead to Dementia in some cases, usually in later stages of a severe infection.
Common types of Dementia caused by infection-related Dementia can include Creutzfeldt-Jakob Disease and other Prion Diseases or Dementia associated with HIV or AIDS.
Toxic and Metabolic Causes of Dementia:
Dementia can also result from a chemical imbalance within the body, caused by either a toxin, malnutrition or other biological conditions such as metabolic disorders.
This type of dementia can lead to Wernicke-Korsakoff syndrome or Leukodystrophy.
Traumatic Causes of Dementia:
Severe injuries and concussions can lead to brain damage and can therefore lead to Dementia, causing Traumatic Brain Injury.
Chapter 3: Discussing Care Options
Discussing Care Options With Your Loved One
Suspecting that your relative or loved one has dementia, means they should see their GP as soon as possible even if you are just concerned.
Dementia is not just about having memory loss, it can also affect the way a person behaves and judges things.
A person with Dementia often becomes confused, angry or can find it difficult to make their own decisions.
They may not understand what is going on or where they are or what time it is.
More severe stages of Dementia can mean that a person loses their ability to take care of themselves and their ability to even walk.
All of these are just some of the reasons as to why it is so important to identify Dementia in your loved one and discuss care options with them to ensure that you can get them the best possible help to make their life with Dementia as comfortable as possible.
Discussing care options
As someone’s Dementia progresses, they will continue to need more support and care and there will become a time when they can no longer remain living independently in their own home alone.
Having discussions as early as possible with your loved ones can help to make the decision to place them into care a lot simpler when the time comes.
Carers can feel a sense of guilt when deciding to place someone into care. Carers may feel they have let that person down.
Despite a common occurrence, carers shouldn’t feel this way.
Being a carer, as the person’s parent or child, you also have your own life to live and there will be some limits to the level of help that you can offer someone.
In later stages of Dementia, they will require 24 hour care, which is impossible to manage when battling your own family commitments as well.
It can also be beneficial to discuss the decision with a social or health care professional as they can carry out a needs assessment which can help you to decide the level of care that your loved one requires.
Although a move to a care home can be emotionally difficult at times, they can help to improve the quality of their life by providing them with the necessary care and support they need at all times of the day.
It is important to inform your loved one of the benefits of moving into a care home, such as the social benefits of living with other people who are also in a similar position to you.
This can help them to interact with other people and build new friendships and can be a great way to join in on activities that they provide.
Helping your loved one adjust to a care home
Adjusting to a care home can be one of the most difficult parts to living with the fact you have Dementia, so it is important to make sure this stage is as easy as possible for your loved one.
There are certain things you can do to help them settle into a care home.
Choose a familiar item for them to bring:
Although the space in a room may be limited, there will always be room for familiar items, this could be a childhood teddy bear or a family photo on their bedside table.
This item needs to be something they treasure and are therefore familiar with to help them settle into their new home easier.
Even a simple item that could make them feel more at home could be bringing their own bed sheets can really help someone feel at home even if they are not.
Providing information about your loved one:
The best thing you can do is impart your knowledge of your loved one on the care home staff.
This may be what they enjoy to do every day; like puzzles, read a book or it may even be informing them of what they do not like.
This can really help them to feel happy and comfortable in their new environment without them getting stressed or disorientated by so many changes.
Minimising the changes they have in their day to day activities can distract their attention from their new surroundings.
With memory loss, a person can adjust easier to changes if a reassuring or familiar face is with them frequently.
A great way to make them feel more settled is to simply create new memories with them in their new home, simply by visiting them, even if you don’t physically do anything.
Spending time in their room can really help them settle.
Wait to take them on outings:
If they are struggling to settle in, it may feel natural to want to take them on outings to calm them down, however this can really have an effect on them in the process of them settling into their new home.
Give them some more time to adjust before taking them on any outings.
Encourage them to participate in activities:
You can consider going with them to an activity, in order to make them feel more comfortable in participating.
Chapter 4: Treating Dementia
How To Treat Dementia
Unfortunately there is yet to be a cure for Dementia, however there are several different forms of medication that help to treat the symptoms of Dementia.
Some medications improve the brain’s functions and help to slow the progression of further symptoms.
Treatment for Dementia
Doctors base the decision of medication on the individual patient’s needs and they consider the factors such as side effects, ease of use and the cost.
Some medication has proven more effective in earlier or later stages of Dementia.
The most commonly prescribed medication for improving a Dementia patient’s cognition and slowing the progress down are Cholinesterase inhibitors and Memantine.
Cholinesterase inhibitors act to increase the levels of the neurotransmitter acetylcholine, that is a chemical to help the brain communicate and work better.
A patient taking this medication may find they are better able to remember names and other details with fewer issues.
Memantine works to prevent the damage and destruction of the brain cells that occurs due to the increased level of glutamate in the brain.
Treatment and care to slow the progress of Dementia
As well as certain medication that can help to treat the progress of Dementia there are some ways that you can also help yourself or your loved one to reduce the progression.
Keeping physically active can help with mental health.
Keeping fit and healthy throughout your life can often reduce the risk and overall impact on mental health issues.
Diet can also have an impact on reducing the speed of loss of brain cells over time.
It appears that those who followed a healthier diet, also had a larger brain volume and can be found to age less comparing with those who had an imbalanced diet.
Symptoms and care for the advanced stages of Dementia
As a person’s Dementia progresses, their symptoms will also worsen, often memory loss and difficulties with communicating become most severe.
As they develop into later stages of Dementia, your relative will likely depend on a carer more, which is often why a care home is then required.
Although most symptoms develop slowly in Dementia the more severe symptoms in advanced stages of Dementia include:
- Memory loss
- Communication problems
- Eating, appetite and weight loss
In later, more advanced Dementia stages, it is likely that your loved one will become more severely frail and dependant on others, where they usually require 24 hour care.
Their behaviour may not mean they want this constant care but in order to prevent injuries they need this level of attention.
If you have a family member that is able to take the time it takes to take care of your loved one at any time of the day, you will still need additional support.
There are nurses that can carry out home visits in order to support with the more medical side of their needs, and provide you with practical advice, emotional support, information and other professional skills to fully take care of your loved one in the best way possible.
It is also possible that in some more severe cases, your loved one will require a hospice when they are nearing the end of their life to be properly cared for by the palliative care team.
Or if your relative becomes ill, they may be admitted to a hospital during later stages of their condition, usually in cases where they have developed an additional illness such as pneumonia.
Other people may require going into a residential care home during the later stages of their Dementia.
Chapter 5: Caring for someone with Dementia
How to take care of someone with Dementia
Caring for someone with Dementia can be very difficult, as different people are affected by it in different ways.
However there are many positive attributes that come with taking care of someone with Dementia, including learning new skills, building on existing skills, strengthening your relationship or to support someone who is important to you when they need you most.
However caring for someone living with Dementia can be physically and mentally demanding and can take up every aspect of your own life, making you feel isolated and stressed and in some cases can lead to depression.
Caring for a person with Dementia
Caring for someone with Dementia can make you feel torn between different responsibilities.
If you are a parent, you may be trying to take care of both your loved one living with Dementia as well as taking care of your family life.
It is crucial to remember that you cannot do everything and you need to focus on what is most important at that present moment in time.
As someone’s Dementia progresses, their needs and abilities will change. This will require you adapt to these changes.
This can often feel like you are having to start over again.
Changes can be small but across the later stages of Dementia, these changes can force you to make difficult choices.
For instance you have to decide where the person lives and the care they receive.
One of the more complex aspects of caring for someone with Dementia is dealing with the range of emotions you experience.
One moment you may feel frustrated or angry and the next you may feel isolated or guilty.
There will be times when you feel such emotions but it is also important to understand how common these emotions are.
However it is important to learn to deal with your emotions without them affecting the care of your loved one as this can have a negative impact on both your life and theirs.
There are key elements that can really help when caring for someone with Dementia, these can include:
- Repetitive behaviour: This can be them carrying out the same activity or asking a question repeatedly.
- Restlessness: This can be where your loved one feels they need to pace around or fidgets often. All restlessness signs can be an indication that they are hungry, thirsty, in pain, stressed, upset or angry, or even that they could need the toilet.
- Lack of inhibition: This can be an issue in some types of Dementia and can cause them to behave in way that people find embarrassing to be around for example through swearing, or making inappropriate comments.
- Night-time waking: Some people with Dementia can become restless at night and may feel the need to get up, get dressed and go for a walk.
- Trailing and checking: This can lead to them feeling insecure or anxious so they may feel they need to follow someone around to know what they are doing.
- Hiding and losing things: It is often that someone with Dementia will unintentionally hide or lose things and then forget where they have put them.
- Paranoia: This can lead to them feeling suspicious and accuse someone of something.
Knowing your limits
It is important to know that you can’t do everything, managing your own life, your family life and caring for your loved one with Dementia at every moment in the day.
It is okay to understand you have limits to caring for someone with Dementia and to understand there are people that can help take the pressure off of you.
In earlier stages of Dementia, it can be ‘easier’ to manage between your work life, family commitments and caring if you prioritise by importance.
Talking can be one of the best ways to confront your emotions, whether it is to a healthcare professional or to a family member or friend.
Bottling your emotions up can only worsen the situation and it is important to know when to ask for help.
Although it may initially feel impossible to be positive when caring for someone with Dementia, it is important for yourself and for them, to think positively and focus on the good things.
Your loved one will have good and bad days, but keeping a tight hold on the good days can really help you get through the bad days.
Taking a break
Another important element to remember is that it is okay to take a break to try and find time to relax and enjoy your own personal life and socialise with friends.
Understanding Dementia behaviour
Understanding typical behaviours associated with Dementia can be difficult because of the way your loved one can take it out on you.
However it is important to understand these are usually all stemmed from their confusion of what is happening to their brain and they do not mean to take it out on you.
Types of unusual behaviour include:
Dealing with behavioural changes
It is difficult to know how to deal with certain behavioural changes in your loved one, due to Dementia having different effects and symptoms on a person.
Talking to a healthcare professional or GP can help you know how to deal with certain behavioural changes.
Further to this it is also important to not be afraid to ask for help when you need it.
It is important to remember that Dementia affects a person’s ability to be logical, causing them to behave in a different way to the way they did before the illness.
Blame the condition for the ways that your loved one is behaving because it is the condition that is causing them to act in this way.
Your relative will appear agitated at times or may act unusually when washing, dressing or getting ready to go out.
Here it is important to take control and ask yourself if you can postpone the stage that is causing agitation until they have relaxed.
Your loved one may be acting differently when they are trying to communicate something across to you.
An example of this could be if they are fidgeting, they may be uncomfortable or if they are trying to undress they may be too warm.
Sometimes being too involved can worsen a situation so it is important to know when your loved one is becoming agitated and to know when to take a step back.
Over time you may also identify certain calming techniques that work in reassuring them but before you have worked out your technique, try speaking in a gentler voice or putting their favourite television programme on.
Tips on making life easier for someone with Dementia
There are several ways that you can make life easier for someone with Dementia, which can help them adapt to living with their symptoms as they worsen.
- Keep them to familiar habits and routines – washing/dressing, meals, bedtime
- Keep clothes simple – replacing laced shoes with velcro fastening, keep buttons minimal
- Help them choose food that is easy to handle – not fiddly
- Be respectful whatever their behaviour and encourage others to be respectful too
- Encourage them to join on group outings or lunches for something social to do
- Keep patterns on carpets and wallpapers to a minimum as well as minimising furniture to help making walking around your houses easier
- Big labels to show your loved one what something is – from milk to toothpaste
- Sticky notes with dates and appointments on the fridge to remind them
- Scented flowers or other enjoyable smells can make them feel better
- Acknowledge any upsetting noises and fix the noise
- Do not react negatively to any accusations or strange demands or frustrating conversations as this is normal and a way they are coping with their own frustration in their brain
To help you;
- Do not take things personally if they get angry with you or criticise you
- Laugh rather than shout or cry; or phone someone else if you need to vent
- Look through old photo albums to remember the good times together
- Write down happy memories and refer them back to them on good days
- Breathe deeply and learn to relax
- Go for a walk or run to relieve any personal stress
- Talk to family about the stresses you are having rather than taking it out on them
All of the above things to help you, will in turn help them to have an easier life if you aren’t battling against them.
Sometimes they do not understand their own actions.
Chapter 6: Living with Dementia
How to live with Dementia
Living with Dementia has a serious impact on a person, their family and their friends, so it is important to understand what to expect and how to deal with the changes caused by Dementia.
Living with Dementia
It is vital that when you receive any diagnosis, to stay as active for as long as possible, in order to enjoy your life without letting the illness take over you.
This involves getting a sufficient amount of hours sleep, eating healthy, exercising regularly and socialising with friends and family.
Although having Dementia, can interrupt these activities, but it is important to avoid any articles which could affect your general health and wellbeing.
Having Dementia can lead to disruptions in sleep patterns and a way of avoiding such issues can be through creating a routine for bedtimes by having regular times each day as this can help to regulate sleep patterns.
Avoid napping and drinking alcohol or caffeine in the evenings to aid sleeping quality.
If you or your relative is diagnosed with Dementia, it is important to share concerns about dealing with the changes that could occur in the future.
Sometimes the only way to deal with such a change is to simply be there for your loved one, whether it is you dealing with the Dementia or your loved one coping with their loved ones symptoms.
There are several ways in which to help to remain independent for as long as possible.
Keeping regular contact with loved ones can support both you and your loved ones to feel as though everything is normal.
Doing regular things that you enjoy together can also help things to feel like they were before diagnosis.
Through encouraging yourself or your loved one to continue hobbies and social groups that they participated in beforehand can help take your mind off the diagnosis.
Sharing fears and anxieties or simply listening to your relative can help you to quickly overcome any concerns you may be having without bottling them inside so you can continue to carry on as normal.
There are practical things you can do to help make day to day life easier which can also help with independence:
- By creating a weekly timetable containing appointments and activities to help prevent forgetting important things.
- Keeping a diary or simply writing things down like emotions and concerns can help you to address this issue and to deal with it yourself.
- Having a daily newspaper delivered to help prompt to remember the day and date
- Sticking labels on fronts cupboards or drawers is a great way to be reminded of what is in there.
- Placing a list of contact numbers by a phone or on speed dial or through saving important numbers in their phone directly can also help to not forget important contact information. And further to this, getting a phone with large buttons on them so they can read everything clearly.
- Writing down reminders for important tasks on sticky notes to remind them to either pick their keys up as they are leaving the house or to turn the oven off after cooking.
- Checking the home has safety devices installed and are working correctly, such as the fire and smoke alarms.
- Setting up direct debits for bills to avoid having to worry about paying for bills on time.
Adjusting to your diagnosis
Finding out you have Dementia can cause mixed emotions and adjusting to your diagnosis is crucial for a healthy wellbeing.
There is no right way to feel, and it is also okay to have down times when you feel overwhelmed, however support from your loved ones can really help you come to terms with the diagnosis.
There are a range of different attributes to take into account after you have your diagnosis, including emotions and relationships, treatments and ways to stay active and healthy, financial matters and planning ahead, your job, driving and practical and emotional support from healthcare professionals.
Although this can be overwhelming to think about at first when you are trying to deal with the fact you have Dementia, it can help to take your mind off of it by putting your mind on something else.
Managing your emotions can be difficult since you normally have several different feelings all at once, however there are ways in which you can try to cope with them.
Many people will feel this range of emotions, whether it is all at once or over a period of time, but it is important to understand that it is normal to feel this way.
Some people may feel sad or as if they have lost something, a part of them or the feeling that they will no longer be able to do the things that they once enjoyed.
Having Dementia does mean that certain attributes to your life will need to change, but it doesn’t mean they have to be completely cut out of your life, they can be tailored to suit your symptoms as they develop.
With the right support and information, you can carry on with regular activities and hobbies.
A sense of shock or denial are also common reactions to finding out you have Dementia and is completely normal to feel this way.
Sometimes this emotion can be a way of your body giving you time to deal with your diagnosis and may not necessarily be a bad thing in the short term.
Fearing the diagnosis of Dementia is a very common reaction and may include fear of the future as well as the present.
It may be that the fear is actually fearing talking to people about the diagnosis, however it is important to talk about your feelings with others to get help and support.
It is quite common to feel as though your diagnosis is a result from doing something wrong.
It is not always clear what causes Dementia so it is important to not dwell on this and to focus on a more positive outlook.
Whilst others may feel relieved to hear there is a reason for their symptoms. This can help some people deal with it and move on with their life.
Although this may feel like a strange reaction to have when diagnosed with an illness, it can be easier to deal and adjust to your symptoms when there is an explanation for them.
Activities for someone with Dementia
It is important to continue as normal for as long as possible when living with Dementia.
Being diagnosed with Dementia should not mean that you have to stop doing what you enjoy.
Keeping as active for as long as possible can help to maintain a healthy quality of life for as long as possible.
However as symptoms begin to progress, it may not be simple to continue with activities you once did.
The following exercise options are more low impact exercises that will better suit someone in a further stage of Dementia:
- Tai chi
- Low impact aerobics
- Seated exercises
There are also activities which are suitable for both individual participation, as well as within a group environment:
- Music and dancing
- Crafts, painting or drawing
- Gardening, housework or cookery
- Simple board games
- Jigsaw puzzles
Chapter 7: Communicating with someone with Dementia
How to communicate with someone with Dementia
Knowing how to communicate with your loved one who suffers from Dementia, can really help to make life easier; both for them and everyone else involved.
Learning techniques on what to say to someone can help to maintain relationships with your loved ones.
How to communicate with someone with Dementia
Due to the increase in the amount of people developing a form of Dementia in their older years, it is a good idea to understand how to communicate with someone who has it.
There are particular ways to act around someone with Dementia, that will help conversing with loved ones easier:
- Avoiding distraction is a way to create a comfortable setting to enable your loved one to focus their attention fully on the conversation they’re having with you.
- Showing you’re actively listening to them through simple gestures like nodding can also indicate to them that you are still listening. As well as using gestures to encourage them to continue speaking, using other non-verbal cues like maintaining eye contact and smiling can also invite them to feel more comfortable in conversation.
- It is also important to not correct or criticise your loved one when they say something incorrect, try to go along with their misstatements to avoid them feeling confused.
- Using a calm or warmer tone when speaking can also be a great way to communicate with someone with Dementia without being condescending.
Avoiding distraction is a way to create a comfortable setting to enable your loved one to focus their attention fully on the conversation they’re having with you.
Showing you’re actively listening to them through simple gestures like nodding can also indicate to them that you are still listening.
As well as using gestures to encourage them to continue speaking, using other non-verbal cues like maintaining eye contact and smiling can also invite them to feel more comfortable in conversation.
It is also important to not correct or criticise your loved one when they say something incorrect, try to go along with their misstatements to avoid them feeling confused.
Using a calm or warmer tone when speaking can also be a great way to communicate with someone with Dementia without being condescending.
Remember to be patient throughout as that is the key to communicating with someone with Dementia.
Things not to say to someone living with Dementia
Further to what is acceptable to say to someone living with Dementia, there are also things which are definitely not recommended to say.
Conversing with someone with Dementia can be difficult as they may find it difficult to form sentences and retell elements of a story.
Alternatively they be telling you something that you know isn’t true, so it may be hard to not tell them they are incorrect.
Here are a few pointers on what is acceptable to say to someone with Dementia:
- Accepting blame for something you are being accused of, even if it is a false accusation. They will not understand that you are telling the truth and this will only lead to confusion and frustration from both sides.
- Agreeing when they have said something which you may not agree with usually and then going on to distract them to a different subject or activity to deter the conversation.
- Be cheerful, patient and reassuring when in conversation, this can help them to feel comfortable with you.
- It is important to not let a conversation lead to an argument. If necessary leave the room to avoid confrontations.
- Repeat instructions exactly the same way if not understood as modifying will only frustrate them.
- Don’t question them on recent memory if you feel a fact is incorrect.
- It is important to not let them know that they have forgotten something or already told you something. Just let them work this out on their own and avoid further confusion.
- Interrupting them or finishing their sentences can also make them feel frustrated.
There are certain ways (without possibly knowing), that your body language can also have an effect on a conversation with someone living with Dementia.
- Sudden movements or tense facial expressions can cause upset. So refrain from this to help them remain calm and collected throughout a conversation.
- Ensure that your facial expressions match your body language to avoid causing confusion
- Try to avoid standing too closely as this can be intimidating.
Chapter 8: Support for Dementia carers
What support is available to Dementia carers
It is important to be aware that even at a time when you feel the most alone, dealing with the care of a loved one, there is support available to you.
Whether this is through family, friends or local authorities. Knowing how you can get this support is crucial to looking after yourself when supporting your loved one.
Support for carers
If you are caring for someone with Dementia, there will come a time that you need support. Carers who have less support often become stressed and this can lead to depression.
It is fairly common for a carer to approach a family member or close friend to support them with the care of their loved one.
However if you do not have someone that could take on this role with you, there are plenty of voluntary organisations or health and social care professionals who have jobs to help people like you out.
There are a wide range of different support organisations that will be willing to help you if you are in need of alternative support before placing your loved one into a care home.
Healthcare professionals, local support groups or online discussion forums.
Looking after yourself
It can have a big impact on your own life and you may find that you end up taking on the role of a carer. Sometimes when you are caring for someone with Dementia, both of you will need support.
Although it can feel very rewarding at times to look after your loved one, it can be very stressful and upsetting.
Even if it feels like you don’t have time for yourself, it is important to allow time to look after your own health and wellbeing and turn to others to support you when you need it.
One of the most difficult factors of caring for someone with Dementia is the range of the emotions that you will encounter from them.
Trying to stay positive throughout the difficult times of supporting your loved one can be hard.
Focusing on the positive aspects of your life can help you to feel better in the more difficult points.
Having a positive attitude can not only make you feel better but can also have a positive effect on the person you are caring for.
If your loved one is who you are supporting, things will change between you due to their symptoms progressing.
However there are still many things you can do together to try and reduce the changes between you.
Listen to music, going for a walk or looking through old photos are just some things you can do together.
It can be hard to not let caring for someone with Dementia take over your own life, as it can be very easy to put their needs before your own.
However the key to caring for someone else, is to look after yourself along the way.
Caring for someone with Dementia can be very demanding so it is important to take care of yourself to be able to provide better care for them.
Just with the advice for someone living with Dementia, eating a well balanced diet, regularly exercising and speaking to someone can really help to maintain a healthy lifestyle.
If you do not take time to eat well or exercise regularly, you may find you begin to have issues sleeping and over time can become anxious and depressed.
Practical support for you
Getting the right support can make it easier to cope and support the person you are caring for.
This can be through a healthcare professional, benefits and your employer, support workers, Dementia specialist nurses, support groups, online discussion forum or a friend or family member.
10 Tips for supporting someone with Dementia
The key to supporting someone with Dementia, is understanding how a person is experiencing their Dementia.
The following tips can help you to support a person with Dementia, both emotionally and physically.
- It is easy to see things from your own perspective without taking into account someone else’s point of view. Putting yourself in their shoes can help you understand how the person might be feeling.
- Being patient with them when they are trying to remember something, as opposed to finishing off their sentences can help them to not feel further frustration.
- Try to make them feel valued and included and don’t do everything for them.
- Include the person in conversations and activities.
- Focus on what they can do rather than what they can’t.
- Think about what is important to the person such as maintaining relationships, social activities, routines, hobbies or interests and ensure they keep doing this.
- Enjoy the moments and try not to focus on the bad times or what has been lost or yet to come with the Dementia progression.
- Accept the way that they cope with living with Dementia and don’t try to change this – this is their way of dealing with the illness.
- Help them keep their identity. They are unique and not someone who is defined by having Dementia.
- Relationships can become affected when someone has Dementia. Try and focus on the positive parts of the relationship through reminiscing.
Dementia should not define a person and nor should it take over their own personal identity.
Being diagnosed with Dementia or any long-term illness that has such a demanding effect on both your own life and your loved ones, can be difficult to come to terms with.
With the right support and the right people around you, it can really help to maintain a person’s health and wellbeing.
Taking the right steps to caring for someone living with Dementia can not only have a positive effect on their life, but yours as a carer as well.