Information about dementia for carers

This Factsheet sets out information about dementia which might help you understand the person with dementia better while carrying out your caring role.

What is dementia?

Dementia occurs as a result of a disease process. It is a term used to describe different brain disorders that have in common loss of brain function, which is usually progressive and eventually severe. Dementia affects memory, thinking, behaviour and emotion.

Dementia affects all groups in society and is not linked with social class, gender, ethnic group or geographical location. Although dementia is more common among older people, younger people can also be affected.

What causes dementia?

Dementia is a physical (not mental) disease that produces changes in the brain resulting in the ultimate loss of nerve cells (neurons). These diseases include:-

Alzheimer's disease

This is the most common cause of dementia and accounts for 50% - 60% of all cases of dementia. It destroys brain cells and nerves disrupting the transmitters that carry messages in the brain, particularly those responsible for storing memories.

Vascular dementia

The brain relies on a network of vessels to bring it oxygen-bearing blood. If the oxygen supply to the brain fails, brain cells are likely to die and this can cause the symptoms of vascular dementia. These symptoms can occur either suddenly, following a stroke, or over time through a series of small strokes (trans ischemic attacks - known as TIAs).

Dementia with Lewy bodies

This form of dementia gets its name from tiny spherical structures that develop inside nerve cells. Their presence in the brain leads to the degeneration of brain tissue. Memory, concentration and language skills are affected.

Fronto-temporal dementia (including Pick's disease)

In fronto-temporal dementia, damage is usually focused in the front part of the brain. Personality and behaviour are initially more affected than memory.

Rarer causes of dementia

There are many other rarer causes of dementia, including progressive supranuclear palsy, Korsakoff's syndrome, Binswanger's disease, HIV and Creutzfeldt-Jakob disease (CJD). People with Multiple Sclerosis, Motor Neurone Disease, Parkinson's Disease and Huntington's Disease can also be at an increased risk of developing dementia as are people with Down's Syndrome.

What are the symptoms of dementia?

Dementia is a progressive condition. This means that the structure and chemistry of the brain become increasingly damaged over time. The person's ability to remember, understand, communicate and reason gradually declines. How quickly dementia progresses depends on the individual. Each person is unique and experiences dementia in their own way.

The way people experience dementia depends on many factors, including physical make-up, emotional resilience and the support available to them. Viewing dementia as a series of stages can be a useful way to understand the illness, but it is important to realise that this only provides a rough guide to the progress of the condition and not all people will display all of these symptoms.

Some of these symptoms may appear in any of the stages, for example a behaviour listed in the late stage may occur in the middle stage. Also, carers should be aware that in all stages, short, lucid periods can occur.

The following outlines the characteristics of early, middle and late stage Alzheimer's disease, and briefly looks at other dementias. For more detailed information on each type of dementia read the Types of Dementia section of the website.

Alzheimer's disease

Early stage
The early stage is often overlooked and incorrectly labelled by professionals, relatives and friends as 'old age' or a normal part of the process of ageing. Because the onset of the disease is gradual, it is difficult to identify the exact time it begins.

The person may:-

• Show difficulties with language
• Experience significant memory loss - especially short-term
• Be disoriented in time
• Become lost in familiar places
• Display difficulty in making decisions
• Lack initiative and motivation
• Show signs of depression and aggression
• Show a loss of interest in hobbies and activities

Middle stage
As the disease progresses, problems become more evident and restricting. The person with dementia has difficulty with day-to-day living, and:-

• May become very forgetful - especially of recent events and peoples' names
• Can no longer manage to live alone without problems
• Is less able to cook, clean or shop
• May become extremely dependent
• Needs assistance with personal hygiene, ie. toilet, washing and dressing
• Has increased difficulty with speech
• Becomes lost at home and in the community
• May experience hallucinations

Late stage
This stage is one of total dependence and inactivity. Memory disturbances are very serious and the physical side of the disease becomes more obvious. The person may:-

• Have difficulty eating
• Not recognise relatives, friends, and familiar objects
• Have difficulty understanding and interpreting events
• Be unable to find their way around in the home
• Have difficulty walking
• Have bladder and bowel incontinence
• Display inappropriate behaviour in public
• Be confined to a wheelchair or bed

Vascular dementia
Some people with vascular dementia find that symptoms remain steady for a time and then suddenly decline as the result of another stroke (or TIA). This contrasts with the gradual decline many people with Alzheimer's disease experience. It is sometimes difficult to determine whether people have Alzheimer's or vascular dementia. It is also possible to be affected by both.

Fronto-temporal lobe dementia (including Pick's disease)
During the early stages the memory may be unaffected. However, there may be other changes. For example, the person may seem more selfish and unfeeling. They may behave rudely, or may seem more easily distracted - in other words, they may lose their social skills. Other symptoms may include loss of inhibition, ritualised behaviour and a liking for sweet foods. In later stages the symptoms are more similar to those experienced in Alzheimer's disease.

Dementia with Lewy bodies
Half or more of those affected also develop signs and symptoms of Parkinson's disease such as slowness of movement, stiffness and tremor. They may also have difficulty in judging distances and are more prone to falls. People with this dementia also commonly experience visual hallucinations. One feature of this dementia that often puzzles carers is that the abilities of the affected person often fluctuate.

Why is diagnosis important?
It is important to get a proper timely diagnosis of dementia. A diagnosis is essential to:-

• Rule out other conditions that may have symptoms similar to dementia and that may be treatable. These include depression, chest and urinary infections, severe constipation, vitamin and thyroid deficiencies and brain tumours.

• Get access to advice, information and support.

• Allow the person with dementia and carer to prepare and plan for the future.

Identifying the cause of dementia is becoming increasingly important as more drugs for treating different dementias become available.

There is no simple test to make a diagnosis. Making a diagnosis of dementia is often difficult, particularly in the early stages. A diagnosis is made by taking a careful history of the person's problems from a close relative or friend, together with an examination of the person's physical and mental status.

Are there treatments for dementia?
At the moment there is no cure, although many of the problems associated with dementia such as restlessness and depression can be treated. However, there is a great deal that can be done for the person with dementia as well as things to ease the burden on you, the carer. Consult your GP, social worker or other health professional for more information.

There are some drugs available for people with dementia. These drugs are not a cure but may temporarily slow down the progression of symptoms, however, they are not suitable for everybody. Contact the Memory Clinic or your GP for more information.

Living with and caring for a person with dementia
Caring can be very difficult at times. However, there are ways to deal with the situation. Here are some tips that have worked for other carers:-

Establish routines but keep things normal
A routine can decrease the decisions you will need to make and bring order and structure into an otherwise confused daily life. A routine may come to represent security for the person with dementia. Although a routine can be helpful, it is important to keep things as normal as possible. Treat the person as you did before the disease as much as their changing condition will allow.

Support the person's independence
It is essential that the person remains independent as long as possible. It helps to maintain their self respect and decreases the burden on you.

Help the person maintain dignity
Remember that the person you care for is still an individual with feelings. What you and others say and do can be disturbing. Avoid talking about the person's condition in their presence without involving them in the conversation.

Avoid confrontation
Any type of conflict causes unnecessary stress on you and the person with dementia. Avoid drawing attention to failure and maintain a calm composure. Becoming upset can only make the situation worse. Remember it is the disease, not the person's, fault.

Simplify tasks
Try to make things simple for the person with dementia. Don't offer too many choices. For example, in the early stages of the disease, the person may be able to dress themselves but as the disease progresses you will need to guide them and, eventually, clothe the person yourself.

Maintain a sense of humour
Laugh with the person with dementia. Humour can be a great stress reliever.

Make safety important
Loss of physical co-ordination and memory increase the chance of injury, so you should make your home as safe as possible. Jersey Alzheimer's Association has a selection of Factsheets on how to make the home 'dementia friendly' in the Safety in the Home section of this website.

Encourage fitness and health
In many cases, this can help maintain the person's existing physical and mental abilities for a time. Appropriate exercise depends on the person's condition. Consult your GP or Occupational Therapist for advice.

Help make the best of a person's existing abilities
Planned activities can enhance a person's sense of dignity and self-worth by giving purpose and meaning to life. A person who was once a homemaker, gardener, doctor or business executive may gain satisfaction from maintaining abilities related to their previous profession. Remember, however, that because dementia is progressive, the person's likes, dislikes and abilities may change over time. This will require you to be observant and flexible in planning activities.

Jersey Alzheimer's Association has Factsheets on ideas for activities.

Maintain communication
As the disease progresses, communication between you and the person can become more difficult. It may be helpful if you:-

• Make sure the person's senses are not impaired, such as eyesight and hearing (eg spectacles may no longer be of the right prescription, or a hearing aid may not be functioning properly)

• Speak clearly, slowly, face to face and at eye level

• Show love and warmth by showing affection if this is comfortable for the person

• Pay attention to the person's body language - people whose verbal language is impaired communicate through non-verbal means

• Be aware of your own body language

• Find out what combination of word reminders, or prompting words, guidance and demonstration is needed to communicate effectively with the person

• Make sure you have the person's attention before speaking

Also see our Communication and How to Communicate by Different Means  Factsheets on helping with communication.

Use memory aids
In the early stages of dementia, memory aids can help the person to remember, and they can help prevent confusion. The following are successful examples:-

• Display large clearly-labelled pictures of relatives so the person can keep track of who is who

• Label doors of rooms with words and bright distinctive colours

Memory aids will not be so useful in the later stages of dementia

Practical tips on managing dementia
The following suggestions are taken from the experiences of carers. You may find some difficult to carry out. Remember, nobody is perfect. You can only do your best and what works one day may not work the next day, or vice-versa.

Bathing and personal hygiene
The person with dementia may forget to bathe, or no longer recognise the need, or may have forgotten what to do. In this situation it is important to respect the person's dignity when offering to help.

Suggestions:-

• Maintain the person's former routine for washing as much as possible

• Try to make bathing a pleasant and relaxing occasion

• A shower may be easier than a bath but if the person has not been used to a shower it may seem alarming

• Simplify the task as much as possible

• If the person refuses to bathe, try again a little later, when the mood may have changed

• Check if teeth are being cleaned regularly

• Allow the person to do as much as possible unaided

• If the person appears embarrassed, keeping portions of the body covered while bathing may be helpful

• Think about safety. Something firm to hold on to, such as support rails, a non-slip mat or an extra chair all help

• If bathing leads to conflict, a stand-up wash might be better

• If you constantly have problems helping with this, get someone else to do it

Also see our Hygiene factsheet.

Dressing
The person with dementia may forget how to dress and may not recognise the need to change clothes. People with dementia sometimes appear in public with inappropriate clothing.

Suggestions:-

• Lay out clothes in the order they are to be put on

• Avoid clothes with complicated fastenings

• Encourage independence in dressing as long as possible

• Use repetition if necessary

• Use non-skid rubber-soled shoes

Read our Dressing factsheet for more information

Using the toilet
The person with dementia may lose the ability to recognise when to go to the toilet, where the toilet is or what to do when in the toilet.

Suggestions:-

• Create a schedule for going to the toilet

• Make the toilet door more obvious by using bright colours and large letters

• Leave the toilet door open so it is easy to find

• Make sure clothing can be easily removed

• Limit drinks within reason before bed time

• Providing a chamber pot or commode by the bedside may be helpful

• Get professional advice from the Continence and Urotherapy Service at Overdale; incontinence is not an inevitable result of dementia and should occur relatively late in the prognosis.

For more information read our Incontinence factsheet.

Cooking
For the person with dementia, the ability to cook may be lost in the middle stages. This poses problems with an increased risk of injury if the person lives alone. Poor physical co-ordination can lead to burns and cuts.

Suggestions:-

• Assess how well the person can do their own cooking

• Enjoy cooking as a shared activity

• Install safety devices, for example change from gas to electricity, but remember that a person with dementia has difficulty learning new skills so try to replace an old model with a new one of the same style. Contact Jersey Gas for free advice and safety checks on 01534 755500

• Remove sharp utensils

• Provide meals, or meal service, and try to see that enough nutritious food is eaten. See our Factsheet on Meal Delivery Services for more information.

Eating
People with dementia often forget if they have eaten, or how to use utensils. In the later stages of dementia the person may need to be fed. Some physical problems will arise such as not being able to chew properly or swallow.

Suggestions:-

• You may have to remind the person how to eat. Sitting with them so they can 'mirror' your movements will encourage them.

• Use finger food - it can be easier to manage and not as messy.

• Use contrasting coloured crockery so that food is clearly visible; for example, do not put mashed potato, white fish and cauliflower cheese on a white plate.

• Cut up food in small pieces to prevent choking. In the late stages of the disease, it may be necessary to mash or liquidise all food

• Remind the person to eat slowly

• Be aware that the person may not be able to sense hot or cold, and may burn their mouth on hot foods or liquids

• When the person has difficulty swallowing, consult your GP or speech therapist to learn techniques to stimulate swallowing

Read our Eating factsheet for more information

Driving
It could be dangerous for the person with dementia to drive, since judgment is impaired and reactions are slowed.

Suggestions:-

• Discuss the subject with the person gently

• Suggest using public transport, as appropriate

• If you cannot dissuade the person from driving, it may be necessary to consult the GP, Memory Clinic or the Parish Hall.

Alcohol and cigarettes
There is no problem with the person with dementia drinking alcohol in moderation, if it does not cause complications with medication. Cigarettes introduce a greater danger because of the risk of fire.

Suggestions:-

• Supervise the person when smoking

• Check alcohol and medication with your doctor

Difficulty sleeping
The person with dementia may be restless at night and disturb the family. This can be the most exhausting problem for carers.

Suggestions:-

• Try to discourage sleeping during the day

• Try daily long walks, and add more physical activity during the day

• Try to make the person as comfortable as possible at bedtime

• If a person does get up in the night make sure they are not at risk; for example, switch off cookers at the mains; make sure dangerous substances are locked away.

For more information read our Sleeplessness factsheet.

Repetitive behaviour
A person with dementia may forget what they have said from one moment to the next, leading to repetitive questioning and actions.

Suggestions:-

• Try to distract the person and suggest something else to see, hear or do

• Write down the answer to commonly asked questions

• Give hugs and reassure with affection, if appropriate for the person

For more information read our Repetition factsheet.

Clinging
The person with dementia may become extremely dependent on you and follow you everywhere. This can be frustrating, difficult to handle, and rob you of your privacy. The person may act this way as a result of feeling insecure and fear that when you leave, you will not return.

Suggestions:-

• Provide something to occupy his/her attention while you step away

• You may want to call on a family member, friend or sitting service to give you some privacy

Losing things and accusations of theft
The person with dementia may often forget where objects were placed. In some cases they will accuse you and others of taking missing objects. This behaviour is caused by insecurity combined with a sense of loss of control and of memory.

Suggestions:-

• Discover if the person has a favourite hiding place

• Keep replacements of important items, eg keys

• Check waste baskets before emptying them

• Respond to the person's accusations gently - not defensively

• Agree with the person that the item is lost and help find it

For more information read our Mistrust and Suspicion factsheet.

Delusions and hallucinations
It is not uncommon for the person with dementia to experience delusions and hallucinations. A delusion is a fixed false belief. For example, the person may hold the false belief of being under threat of harm from the carer, a family member or visitor. To the person with dementia the delusion is very real and causes fear, and may result in distressing self-protective behaviour.

If the person is experiencing an hallucination, he/she might see or hear things that are not there; for instance, figures at the foot of the bed, or people talking in the room.

Suggestions:-

• Do not argue with the person about the validity of what is seen or heard

• When the person is frightened try to give comfort. Your calm voice and gently holding a hand can be comforting

• Distract the person by drawing attention to something real in the room

• Check with your doctor about medications that are being used, these may contribute to the problem

Read more in our Hallucinations factsheet.

Sexual relationships
Dementia does not usually affect sexual relationships, but the person's attitude may alter. Gentle cuddling and holding may be mutually satisfying, and will let you know if the person is able or inclined to engage in further intimacy. It is wise to be patient. The person may not respond in the same way as before, or may seem to lose interest. For some couples, sexual intimacy continues to be a satisfying part of their relationship.

The opposite may occur, too. The person may make excessive demands for sex, or behave in a manner that makes you feel uncomfortable. You may feel guilty about needing or wanting to sleep separately.

Suggestions:-

• Seek help from other carers or professionals you trust

• There are people with special skills in this area, such as psychologists, social workers or counsellors who can provide advice and guidance

• Don't be afraid to discuss these and related issues with a professional who is trained to understand and help you manage them.

Inappropriate sexual behaviour
The person with dementia may display inappropriate sexual behaviour, but it is rare. Behaviour may include undressing in public, fondling the genitals, or touching someone in an inappropriate way. It may be something simple such as the person needing the toilet or wishing to go to bed.

Suggestions:-

• Try not to over-react to the behaviour - remember it is the disease taking effect

• Try to distract the person to another activity

• If the person removes clothing, gently discourage the behaviour, and try to distract the person

• If it persists and is troubling, seek help from a professional

Leaving the house
This can be a worrying problem that you may need to manage. People with dementia may walk around the home or leave the house and walk around the neighbourhood. They may get lost. Safety is a primary concern when the person with dementia is out in public alone. This is sometimes referred to as 'wandering', but people with dementia do not wander, they always believe they have a valid reason for leaving the house.

Suggestions:-

• Make sure the person carries some form of identification. Jersey Alzheimer's Association has Helpcards for the person with dementia and the carer

• Make sure your home is secure and that the person is safe in your home and cannot leave without you knowing

• When the person is found, avoid showing anger - speak calmly, with acceptance and love

• It is helpful to keep an up-to-date photograph in case the person gets lost and you must ask for help from others

For more information read the Moving About, Leaving Home factsheet.

Violence and aggression
From time to time, the person may become angry, aggressive or violent. This can happen for a variety of reasons such as sense of loss of social control and judgment, being told to do something they do not want to do, loss of the ability to express negative feelings safely, and loss of the ability to understand the actions of others. This is one of the most difficult things to cope with as a carer.

Suggestions:-

• Keep calm, try not to show fear or alarm

• Try to draw the person's attention to a calming activity

• Give the person more space and leave them for a while

• Find out what caused the reaction - and try to avoid it in the future

• If violence occurs often, you will need to seek help. Talk to someone for support, and speak to your GP or the Memory Clinic about help in managing the person

For more information read our Aggressive Behaviour factsheet.

Depression and anxiety
The person with dementia may experience depression and be withdrawn and unhappy, and will speak, act and think slowly. This can affect the daily routine and interest in food.

Suggestions:-

• Speak to your GP, who may be able to help by way of medication or offer a referral to a counsellor, psychologist or psychiatrist

• Give more love and support to the person

• Don't expect the person to snap out of the depression

Did you know?

If we could delay the onset of Alzheimer's by 5 years we could halve the number of people who die with the disease.