Dementia is a syndrome (a group of related symptoms) that is associated with an ongoing decline of the brain and its abilities. These include:

• memory
• thinking
• language
• understanding
• judgement

People with dementia may also become apathetic, have problems controlling their emotions or behaving appropriately in social situations. Aspects of their personality may change or they may see or hear things that other people do not, or have false beliefs. Most cases of dementia are caused by damage to the structure of the brain. People with dementia usually need help from friends or relatives, including help in making decisions.

How common is dementia?

Dementia is a common condition. In England alone, there are currently 570,000 people living with dementia. That number is expected to double over the next 30 years.

Usually dementia occurs in people who are 65 or over. The older you get, the more likely you are to develop it. Dementia is slightly more common in women than in men.

Types of dementia

Listed below are the different types of dementia.

• Alzheimer's disease, where small clumps of protein, known as plaques, begin to develop around brain cells. This disrupts the normal workings of the brain.
• Vascular dementia, where problems with blood circulation result in parts of the brain not receiving enough blood and oxygen.
• Dementia with Lewy bodies, where abnormal structures, known as Lewy bodies, develop inside the brain.
• Frontotemporal dementia, where the frontal and temporal lobes (two parts of the brain) begin to shrink. Unlike other types of dementia, frontotemporal dementia usually develops in people who are under 65. It is much rarer than other types of dementia.

This section focuses on vascular dementia, dementia with Lewy bodies and frontotemporal dementia.

Outlook

There is no cure for dementia and symptoms will get worse over time. However, there are a number of effective treatments that can help people to cope better with their symptoms and improve their quality of life.

Want to know more?

• Alzheimer’s Society: What is dementia?
• The Dementia Centre: about dementia

Vascular dementia

The symptoms of vascular dementia can develop suddenly and quickly worsen, or they can develop gradually over many months.

Symptoms include:

• increasing difficulties with tasks and activities that require concentration and planning
• memory loss
• depression
• changes in personality and mood
• periods of mental confusion
• low attention span
• urinary incontinence
• stroke-like symptoms, such as muscle weakness or paralysis on one side of the body
• visual hallucinations (seeing things that are not there)
• wandering during the night
• slow and unsteady gait (the way that you walk)

Symptoms of dementia with Lewy bodies

The symptoms of dementia with Lewy bodies usually develop gradually but get more severe over the course of many years.

The symptoms of dementia with Lewy bodies include:

• memory loss
• low attention span
• visual hallucinations (seeing things that are not there) - usually people will see other people or animals that are not real
• periods of mental confusion
• delusions (believing in things that are not true)
• difficulty planning ahead
• muscle stiffness
• slower movement
• shaking and trembling of arms and legs
• shuffling while walking
• problems sleeping 
• loss of facial expression.

Symptoms of fronto-temporal dementia

Fronto-temporal dementia is caused by damage to the parts of the brain that help control emotional responses and behaviour. Therefore, many of the initial symptoms of frontotemporal dementia involve changes in emotion, personality and behaviour.

Someone with fronto-temporal dementia may become less sensitive to other people’s emotions. This can make them seem cold and unfeeling.

They may also lose some of their inhibitions. This could lead to strange behaviour, such as making sexually suggestive gestures in a public place, being rude to others or making tactless comments.

Other symptoms of fronto-temporal dementia include:

• aggression
• compulsive behaviour
• being easily distracted
• an increasing lack of interest in washing themselves
• personality changes: person who was previously withdrawn may become very outgoing or vice versa.

Some people with fronto-temporal dementia also have problems with language. This can include speaking far less than usual or not speaking at all, or having problems finding the right words to express themselves or describe something.

Want to know more?

• Dementia UK: about dementia
• Alzheimer’s Society: What is vascular dementia?
• Alzheimer’s Society: What is dementia with Lewy bodies (DLB)?
• Alzheimer’s Society: What is fronto-temporal dementia (including Pick’s disease)?

Glossary

Incontinence

Incontinence is when you pass urine (urinal incontinence), or stools or gas (faecal incontinence), because you cannot control your bladder or bowels.

Hallucinations

Hallucinations are a sensory experience in which a person sees, hears, or feels something or someone that isn't really there.

Depression

Depression is when you have feelings of extreme sadness, despair or inadequacy that last for a long time.

Vascular dementia

Vascular dementia is caused when there is an interruption in the blood supply to the brain.

Like all organs, in order to work properly, the brain needs a constant supply of oxygen and nutrients, which is provided by your blood (vascular system). If the supply of blood is restricted or stopped, brain cells begin to die, resulting in brain damage.

This interruption to blood supply can develop gradually over time if the vessels inside the brain narrow and harden. This narrowing and hardening of the blood vessels is usually caused when fatty deposits build up on the blood vessel walls, restricting the flow of blood. This is called atherosclerosis.

Known risk factors for atherosclerosis include:

• diabetes
• obesity
• smoking
• drinking too much alcohol
• lack of exercise
• eating a high-fat diet

Atherosclerosis in the smaller blood vessels in the brain will also cause them to gradually clog up, depriving the brain of blood. This is known as small vessel disease.

The blood supply to the brain is interrupted rapidly during a stroke and this can also cause damage to the brain cells.

Not everyone who has had a stroke will go on to have vascular dementia. However, if you have had a stroke or have been diagnosed with small vessel disease, you may be at higher risk of developing vascular dementia.

Dementia with Lewy bodies

Lewy bodies are small, circular lumps of protein that develop inside the brain. It is not known what causes them. It is also unclear how they damage the brain and cause dementia. One theory is that they block the effects of two neurotransmitters called dopamine and acetylcholine.

Neurotransmitters are messenger chemicals that send information from one brain cell to another.

Both dopamine and acetylcholine are thought to play an important role in helping to regulate many brain functions, such as memory, learning, mood and attention. Therefore, by blocking their effects, Lewy bodies may trigger dementia.

Fronto-temporal dementia

Fronto-temporal dementia is caused by two parts of the brain (the temporal lobe and the frontal lobe) becoming increasingly damaged and then shrinking.

In an estimated 40-50% of cases, people who develop fronto-temporal dementia have inherited a genetic mutation (an altered gene) from their parents. These genetic mutations are thought to have a negative effect on a protein called the tau protein.

All brain cells contain tau proteins that help to keep them stable. However, if tau proteins stop working properly, they can damage brain cells.

Motor neurone disease is also known to cause fronto-temporal dementia.

Less common causes of dementia

Dementia or dementia-like symptoms can have a number of less common causes, some of which are treatable. These include:

• repeated injury to the head
• infections of the brain, such as meningitis or encephalitis
• Huntington's disease, a rare genetic condition that causes progressive brain damage
• Creutzfeldt-Jakob disease (CJD), a rare and fatal condition that causes damage to the brain and nervous system
• an overactive or underactive thyroid gland
• dehydration
• lack of vitamin B in the diet
• poisoning, for example from lead or pesticides 
• having a brain tumour
• certain lung and heart conditions that interrupt the supply of blood and oxygen to the brain

Want to know more?

• Alzheimer’s UK: causes of dementia

Glossary

Brain

The brain controls thought, memory and emotion. It sends messages to the body controlling movement, speech and senses.

Blood vessels

Blood vessels are the tubes in which blood travels to and from parts of the body. The three main types of blood vessels are veins, arteries and capillaries.

Blood

Blood supplies oxygen to the body and removes carbon dioxide. It is pumped around the body by the heart.

High blood pressure

Hypertension is when the pressure of the blood in your bloodstream is regularly above 140/90 mmHg.

Heart

The heart is a muscular organ that pumps blood around the body.

Confirming a diagnosis of dementia can be difficult, particularly when the condition is in its early stages. This is because many of the symptoms of dementia can be caused by other conditions.

It can be helpful if you and a close relative are seen together, as they can help you remember what is happening.

In order for dementia to be diagnosed correctly, you will have a number of different tests and assessments including:

• a review of your personal history including education and employment
• a review of your medical history
• a full assessment of your mental abilities 
• a range of tests, including blood tests to rule out other possible causes of your symptoms, such as a vitamin B deficiency
• imaging scans, such as a CT scan or magnetic resonance imaging (MRI) scan, which can provide information about the physical state and structure of your brain
• a review of any medication you may be taking, in case these are contributing to your symptoms

Some of these tests can be carried out by your GP. Others will be carried out by other specialists, such as a neurologist (an expert in treating conditions that affect the brain and nervous system) or a psychiatrist with experience in treating dementia.

Assessing your mental abilities

There are some questionnaires that can be used to help test your mental abilities and how severe your symptoms are. One widely used questionnaire is the Mini Mental State Examination (MMSE).

The MMSE can be used to assess a number of different mental abilities including:

• short- and long-term memory
• attention span
• concentration
• language and communication skills
• ability to plan
• ability to understand instructions

The MMSE is a series of questions, each carrying a score that can give a maximum result of 30 points. Example questions include:

• memorising a short list of objects and then repeat the list back
• writing a short sentence that is grammatically correct, such as ‘the dog sat on the floor’
• correctly identifying the current day of the week, followed by the date, the month, the season and the year

The MMSE cannot diagnose dementia by itself but it is useful for assessing the level of mental impairment that a person with dementia may have.

• a score of 25 or above is considered normal
• a score of 18 to 24 indicates mild to moderate impairment
• a score of 17 or below indicates serious impairment

These scores are affected by education. Some people who cannot read or write well may always score less than 25, but they may not have dementia. Other people with a higher level of education, may have a higher score but still have dementia.

Want to know more?

• Dementia UK: How should we get an assessment/find out if this is dementia?
• Alzheimer’s Society: The Mini Mental State Examination.

Further tests

There are blood tests that can be used to rule out other conditions that may be responsible for the patient's symptoms.

A full blood count

A full blood count can be used to assess your general health and check for a range of disorders, including anaemia and infection. A blood sample will usually be taken from a vein in your arm using a needle and syringe. The test will also check for other illnesses.

Blood glucose test

A blood glucose test can be used to find out whether your blood glucose level is normal, and can also determine whether you have diabetes. A blood sample is taken to rule out whether your symptoms might be caused by undiagnosed diabetes.

Urine analysis

Urine analysis is used to diagnose diabetes or problems with your kidneys. During the test, you will be asked to pass a small sample of urine into a sterile container.

Measurement of thyroid hormones

A measurement of your thyroid hormones may be taken in order to screen for thyroid disorders, including an underactive thyroid (hypothyroidism) and an overactive thyroid (hyperthyroidism).

Measurement of vitamin B₁₂ levels

You may also have a test to check whether your symptoms are caused by a lack of vitamin B₁₂. However, if you do have a B₁₂ deficiency, it is still possible that you may also have dementia.

Imaging scans

Imaging scans can check if there are any underlying problems with your brain, such as a brain tumour, that could help explain your symptoms.

Imaging scans can also identify changes in the appearance of the brain that may indicate dementia. Several types of imaging scans can be used in the diagnosis of dementia.

Computerised tomography

A computerised tomography (CT) scan can take a series of X-ray images of your brain. The images are fed into a computer to build up a detailed 3D image of the inside of your brain.

Magnetic resonance imaging

A magnetic resonance imaging (MRI) scan may be used as an alternatve to a CT scan.

MRI scans help doctors determine whether:

• there is any shrinkage to the outer layer of the brain
• there is any evidence of changes to the blood vessels
• there are any blood clots that might have resulted in vascular dementia

The test will also show whether other conditions, such as a brain tumour, are causing your symptoms.

Single photon-emission computed tomography

A single photon-emission computed tomography (SPECT) scan may be recommended if doctors are unsure whether you have Alzheimer's disease, frontot-emporal dementia or vascular dementia.

A SPECT scan is similar to a CT scan, but the scanner used for a SPECT scan is able to take moving pictures of the blood flow in your brain. The results show if the blood flow in your brain is abnormal, which can often be used to help diagnose the type of dementia.

Glossary

Brain

The brain controls thought, memory and emotion. It sends messages to the body controlling movement, speech and senses.

Blood

Blood supplies oxygen to the body and removes carbon dioxide. It is pumped around the body by the heart.

MRI

MRI stands for magnetic resonance imaging. It is the use of magnets and radio waves to take detailed pictures of inside the body.

Your care plan

If you are diagnosed with dementia, your future health and social care needs will be assessed and a care plan will be drawn up. A care plan is a way of ensuring you receive the right treatment for your needs.

Examples of questions that could come up while drawing up your care plan are listed below.

• What support do you or your carer need for you to remain as independent as possible?
• Are there any changes that need to be made to your home to make it easier to live in?
• Do you want ot attend a memory group to help your memory?
• What information do you need about the illness and benefits?
• Is there any medicines that will help? If there are, you should be given information about them and asked if you need help in taking them. It will also be discuseed how the effects of the medicines will be monitored.

This is your care plan so ask as many questions as you want and make sure that your wishes are known.

Want to know more?

• Your health, your way: What is a care plan?

Patient consent, Power of Attorney and advanced directive

Patient consent means that you must give express permission before any medical treatment can be carried out on you. Consent is needed for all treatments, whether it's a simple blood test or an organ donation.

The only time when treatment can go ahead without your permission is if you cannot make a decision on your own and the doctors responsible for your care believe that treatment is in your best interests.

There may be a time in the future when your symptoms mean that you are no longer able to give consent. You may wish to give a relative you trust the power to make decisions about you if you cannot - this is called Lasting Power of Attorney.

You may also wish to draw up an advanced directive after first receiving a diagnosis of dementia. An advanced directive makes your treatment preferences known now, in case you are unable to do this later.

Subjects covered by an advanced directive can include:

• what treatment you would consider having and in what circumstances
• what types of treatment you would never wish to have, no matter what the circumstances
• what type of end-of-life care you would wish to have, e.g. whether you would want to be resuscitated by artificial means, such as having a breathing tube inserted into your neck if you have lung failure
• whether you would be willing to donate organs after your death

You cannot request anything illegal in your advanced directive, such as assisted suicide. Your care team can provide you with more information and advice about advanced directives.

You may wish to appoint a friend or family member to take care of your financial and legal affairs. This is known as granting power of attorney.

Want to know more?

• Alzheimer’s Society: Enduring Power of Attorney and Lasting Powers of Attorney 
• Making key decisions for families and carers (PDF, 852kb).

Psychological treatments

A number of different psychological treatments can be used to help you cope with the symptoms of dementia and slow down the symptoms.

Cognitive stimulation and reality orientation therapy

Cognitive stimulation involves taking part in activities and exercises that are designed to improve your memory, problem-solving skills and language ability.

Reality orientation therapy is a type of therapy that reduces feelings of mental disorientation, memory loss and confusion, while improving feelings of self-esteem.

The therapy may involve group work in a classroom, in which a board prominently displays information such as:

• the current day and date
• the location of the classroom
• the names of the people in the group

The group members repeat a series of tasks designed to give mental stimulation. These tasks also reinforce information regarding the time, the place and the people involved in the group.You will be involved in discussions about a variety of topics, as well as taking part in word and memory games.

Behavioural therapy

Behavioural therapy is used to help treat many of the behavioural problems that are associated with dementia, such as depression, aggression and delusional thinking.

Behavioural therapy is usually provided by a carer, who can be a trained friend, relative or an employed carer. It is supervised by a health professional.

Behavioural therapy uses a problem-solving approach where possible motivations and reasons for troublesome behaviour are identified. Different strategies are adopted to try to change that behaviour.

For example, a person with dementia may have a history of wandering out of their home or care centre because they feel restless. Therefore, a strategy that involves encouraging them to take part in regular physical exercise may lessen their restlessness.

Medicines

Acetylcholinesterase inhibitors

Acetylcholinesterase inhibitors are widely used to treat Alzheimer’s disease. They are not usually recommended for other forms of dementia because the evidence for their effectiveness is limited and, in some cases, they may make symptoms worse.

One exception is for people living with dementia with Lewy bodies who have behavioural problems, such as delusions or hallucinations that cause them significant distress or lead to challenging behaviour.

Acetylcholinesterase inhibitors work by preventing the breakdown of the neurotransmitter acetylcholine, as low levels of acetylcholine have been linked to behavioural problems.

Side effects include:

• nausea
• vomiting
• diarrhoea
• muscle cramps
• fatigue
• loss of appetite
• agitation
• aggressive behaviour
• dizziness and fainting
• insomnia
• urinary incontinence

Antipsychotics

Antipsychotics are medicines that can be used to treat challenging and disruptive behaviour in a person, such as aggression or agitation.

However, antipsychotics are not usually recommended for the treatment of dementia because:

• they can increase the risk of a person experiencing cardiovascular diseases, such as stroke and heart attack
• they can make the symptoms of dementia worse

Also, in people who have dementia with Lewy bodies, there is evidence that antipsychotics can cause a range of serious side effects, such as:

• rigidity
• immobility
• being unable to perform tasks
• being unable to communicate and possibly
• sudden death

Antipsychotics are usually only used in cases where there are severe symptoms of challenging and disruptive behaviour that is judged to place you or others at risk of harm. They are only used if there is a full discussion between yourself or your carer and your care team about the benefits and risks of treatment.

Antipsychotics will be prescribed at the lowest dose possible and for as short a time as possible. Your health will also need to be carefully monitored if you are taking antipsychotics.

Side effects of antipsychotics can include:

• drowsiness
• shaking
• trembling
• muscle twitches
• spasms
• weight gain
• blurred vision
• constipation
• lack of sex drive
• a dry mouth

Preventing vascular dementia

While it is not possible to prevent all cases of dementia, there are some measures that can help prevent vascular dementia, as well as cardiovascular diseases, such as strokes and heart attacks. As experts in treating dementia often say, ‘What is good for your heart is also good for your head.’

The best ways to prevent vascular dementia are:

• eat a healthy diet
• maintain a healthy weight
• get regular exercise 
• drink alcohol in moderation
• don't smoke
• make sure your blood pressure is checked and controlled
• if you have diabetes, make sure you keep to the diet and take and medicines

Diet

To help prevent dementia, a low-fat and high-fibre diet is recommended. This includes plenty of fresh fruit and vegetables (five portions a day) and wholegrains.

Limit the amount of salt that you eat to no more than six grams a day. Too much salt will increase your blood pressure, which puts you at risk of vascular dementia. One teaspoonful of salt is about six grams.

Avoid eating foods that are high in saturated fat because this will increase your cholesterol level, which also puts you at risk of vascular dementia.

Foods high in saturated fat include:

• meat pies
• sausages and fatty cuts of meat
• butter
• ghee (clarified butter, often used in Indian cooking)
• lard
• cream
• hard cheese
• cakes and biscuits
• foods that contain coconut or palm oil

Eating some foods that are high in unsaturated fat can decrease your cholesterol level. Foods high in unsaturated fat include:

• oily fish
• avocados
• nuts and seeds
• sunflower, rapeseed and olive oils

Want to know more?

• Live Well: healthy eating

Weight

Being overweight can increase your blood pressure, which increases the risk of vascular dementia. This risk is higher if you are obese.

The most scientific way to measure your weight is to calculate your Body Mass Index (BMI). This is your weight in kilograms divided by your height in metres, squared. In the UK, people with a BMI of between 25 and 30 are overweight, and those with an index above 30 are obese. People with a BMI of 40 or more are morbidly obese.

The best way of tackling obesity is to reduce the amount of calories that you eat and take regular exercise. Your GP can give you further information and advice about how you can do this.

Want to know more?

• Live Well: lose weight

Exercise

Regular exercise will make your heart and blood circulatory system more efficient. It will also lower your cholesterol level and keep your blood pressure at a healthy level, all of which will lower your risk of developing vascular dementia.

For most people, at least 150 minutes (2 hours and 30 minutes) of moderate-intensity aerobic activity (i.e. cycling or fast walking) every week, is recommended.

Want to know more?

• Live Well: exercise and fitness

Alcohol

Drinking excessive amounts of alcohol will cause a rise in your blood pressure and raise the cholesterol level in your blood.

Sticking to the recommended limits for alcohol consumption is the best way to ensure that you reduce the risk of high blood pressure, cardiovascular disease and vascular dementia.

The recommended daily levels of alcohol consumption are three to four units of alcohol for men, and two to three units for women. A unit of alcohol is equal to about half a pint of normal strength lager, a small glass of wine or a pub measure (25ml) of spirits.

Want to know more?

• Live Well: alcohol.

Smoking

Smoking can cause your arteries to narrow, which can lead to a rise in your blood pressure. It is also a major risk factor for developing cardiovascular diseases, cancer and vascular dementia.

The NHS Smoking Helpline offers advice and encouragement to help you stop smoking. You can call on 0800 022 4332 or visit NHS Smokefree.

Your GP or pharmacist can also help and give you advice about giving up smoking.

Want to know more?

• Live Well: stop smoking

Preventing other types of dementia

There is some evidence that rates of dementia are lower in people who remain as mentally and physically active as possible throughout their lives, and have a wide range of different activities and hobbies.

Some activities that may reduce the risk of developing dementia include:

• reading
• writing for pleasure
• learning foreign languages
• playing musical instruments
• taking part in adult education courses
• playing tennis
• playing golf
• swimming
• group sports, such as bowling
• walking

There is no evidence that playing ‘brain training’ computer games reduces the risk of dementia.

Staying independent

A diagnosis of dementia will have a big impact on your life. You and your family may worry about how long you can care for yourself, especially if you live alone. People with dementia can remain independent for some time but will need support from family and friends.

Living at home
In the early stages of dementia, many people with dementia are able to look after their homes in the same way as before their diagnosis. As the illness gets worse, people with dementia find it difficult to look after their homes and will need help with daily activities such as housework and shopping. They may also need adaptations to their home to keep themselves safe, mobile and independent. 

Keeping active
People with dementia should continue to enjoy their hobbies and interests. These activities are enjoyable and keep people alert and stimulated so they maintain an interest in life. Do not rule out an activity simply because you or your family member has dementia. Activities may change as the illness gets worse, but people with dementia can and should continue to enjoy their spare time.

Social life
It's easy to feel isolated and alone if you or someone you care for has dementia. But keeping in contact with other people is good for people with dementia because it helps to keep them active and stimulated.

Some people will find it difficult to talk about their own or a family member’s dementia, or want to help but do not know how. If a friend or family member finds it hard to talk to you, don’t lose touch. Make the first move, explain that you still need to see them and tell them how they can help you. You may also find it helpful to join a local group of people with dementia and their families.

Driving
Some people with dementia prefer to give up driving because they find it stressful but others can continue driving for some time. To continue driving, you must inform the Driver and Vehicle Licensing Agency (DVLA) that you have dementia. To protect themselves, their passengers and other road users, people with dementia must give up driving when their symptoms have become bad enough to make them unsafe drivers.

Want to know more?

• Alzheimer’s Society: remaining independent
• Alzheimer’s Society: driving and dementia

Sleeping well

Sleep is often disturbed in people with dementia, who may wake up or be restless at night. These problems may get worse as the illness progresses. People with dementia may also have painful illnesses such as arthritis that cause or contribute to sleep problems.

Some drugs can cause sleepiness during the day and interfere with sleep at night. Sleeping drugs can be used with care in people with dementia. But ‘sleep hygiene’ measures are best for people with dementia. These approaches include no naps during the day, regular bedtimes and no alcohol or caffeine at night.

Want to know more?

• Royal College of Psychiatrists: sleeping well 

Feeling down

If you or a family member has dementia, you may find it difficult to be positive all the time. Remember, you're not alone and that help and support is available. Talk to someone about your worries. This may be a family member or friend, a member of your local dementia support group, or your GP can refer you to a counsellor in your area.

Want to know more?

• Alzheimer’s Society: local information
• Carers Direct: information, advice and support for carers
• The Dementia Centre: support line

If you work

Coping at work is a worry for people with dementia. You should speak to your employer as soon as you feel ready. You can also get advice from the disability employment advisor at your local job centre, your trade union or your local Citizens Advice Bureau. If you decide to leave work, get advice on your pension and benefits.

You could continue working or get back to work by re-arranging your workload with your employer. Your local disability employment advisor can help and advise you.

Want to know more?

• Alzheimer’s Society: working
• Citizens Advice Bureau: get advice

Dementia and relationships

It's important to tell your family and friends if you have dementia so they understand what is happening. If you find this difficult, you could ask your doctor to discuss your symptoms with your family. As your symptoms worsen, your family will then understand why you may not always remember them.

Dementia does not necessarily prevent you from continuing to enjoy your relationships and previous sex life. Some couples find that they can still be close even if other abilities have declined. But dementia can increase or reduce previous sexual feelings, and you or your sexual partner may find this distressing.

If you feel able, talk to family and friends, or other people with dementia. Alternatively, your GP can help you find a counsellor or therapist who can provide professional advice.

Want to know more?

• Alzheimer’s Society: relationships
• Relate

Financial support

People with dementia need to organise their financial and legal affairs while they're able to make decisions. Get professional advice on wills, pensions, how to manage any financial assets, and how to ensure that any partner and children are protected.

Someone with dementia should consider appointing a person to manage their money in case they are no longer able to do so themselves. This ‘lasting power of attorney’ also means the person can make decisions about health and welfare matters on your behalf.

Someone with dementia could claim a range of benefits if they meet certain conditions. These conditions will vary according to you and your family’s circumstances, but people with dementia can usually claim attendance allowance or Disability Living Allowance. Carers should also check if they can claim carer’s allowance. You can get advice and help in claiming benefits from your local social security office, voluntary organisations and support groups.

Want to know more?

• Alzheimer’s Society: financial and legal affairs
• Carers Direct: benefits for carers and benefits for the person you care for 
• Money Advice Service

Care at home

A person with dementia should have a health and social care assessment from the local social services team. Following this assessment, an occupational therapist may recommend practical support, such as equipment and adaptations to your home that will help make life easier and keep you independent for as long as possible.

You may also be entitled to ‘direct payments’, which are local authority payments for someone who needs help and would like to buy services such as help with housework, washing and dressing, instead of receiving them from the local council.

As symptoms get worse, people with dementia and their carers may begin to find it difficult to manage at home even with regular respite care. The next step is long-term care in a residential home or a nursing home. A residential home offers help with personal care, while a nursing home provides more specialised care. Before you decide on the move to a care home, it is essential to get advice on paying for this care.

Want to know more?

• Carers Direct: assessments
• Directgov: benefits and financial support
• Alzheimer’s Society: long-term care
• Age UK: money matters

Support for carers

It's important for a carer’s physical health and psychological wellbeing to be able to take a break (respite) from care. Carers may also need respite care when they themselves have to go into hospital or meet other important commitments.

Friends, relatives and neighbours can provide respite care at home. You can also arrange home respite care through homecare agencies or, in some areas, your local authority. Care away from home can confuse some people with dementia, both while they are away and when they come back. If you decide on respite care away from the person's home, it's a good idea to visit the place beforehand to check that it meets the needs of the person with dementia.

Want to know more?

• Carers Direct: taking care of yourself
• Alzheimer’s Society: respite care

Palliative care

People with dementia often live for many years after their illness is diagnosed. End of life or palliative care supports anyone with an incurable illness to live as well as possible until their death. It also involves support for family members.

The National Institute for Health and Clinical Excellence (NICE) identifies end of life as a key part of a care plan for the person with dementia. This plan should enable the person with dementia to die with dignity where they wish, and to support carers during bereavement. After their diagnosis, people with dementia may also wish to think about their own preferences for end of life care, for example, by making an advance statement of their wishes.

Want to know more?

• Live Well: end of life care
• Alzheimer’s Society: palliative care/withdrawing and withholding treatment
• Carers Direct: accessing palliative care
• NICE: Dementia: supporting people with dementia and their carers (PDF, 242kb).

Stan Lintern has had Alzheimer’s disease for more than 10 years. He is cared for by his wife Denise, who helped set up the Maidstone branch of the Alzheimer’s Society and runs the helpline. Last year, she was awarded an MBE for services to her local community. They have three children.

“I was 49 when Stan was diagnosed. He’d been having problems with his memory for a bit, and was lacking in motivation after taking early retirement. We thought it was due to him missing his work.

“His behaviour began to be a bit odd at times, so when I was seeing our GP, I mentioned it. The GP suggested that Stan go for an appointment. After about six months of extensive tests, Stan was diagnosed with Alzheimer’s.

“It was a devastating shock, but also good in a way because at least we knew what we were dealing with. It had been horrible not knowing what was causing his weird behaviour.

“For the first few years, we carried on with normal life. Stan was a Premier League table-tennis player and he still enjoyed doing that. He continued to drive and we went on lots of holidays. He was a very meticulous man and liked everything to be ‘just so’.

“But, as the Alzheimer’s took over, he just decided he wasn’t going to do things any more. I think he thought that if he couldn’t do it the way he liked to do it, he wasn’t going to bother any more.

“Every time there has been a big change with Stan, I have to stop and take stock. Stan needs full-time care now. He’s in a wheelchair and needs to be fed. He doesn’t speak any more and I’m not sure that he understands what I’m saying. I have some outside help during the week, but mostly it’s down to me.

“We still go away. I have a hoist for getting him around indoors and a Transporter ‘truck’ with a hydraulic tail lift to go out in. We still like going to Holland to see my cousins and their families, and visiting various places in the UK.

“The only thing we don’t do is fly anywhere. I don’t feel a prisoner because I’ve made sure that I can be independent and that we can get away. Stan is always more awake and aware when we’re doing something different."

Life for Dawn and Dave Edmonds changed forever when he was diagnosed with Alzheimer's.

“I was 45 when Dave was diagnosed with Alzheimer's disease. Now I feel like I’m living in an emotional desert. I haven’t had sex for six years and I’ve lost my best friend: my husband.

“We were on holiday when I first realised he was having problems with his memory. If we left the hotel separately, he couldn’t find his way back. He couldn’t write his signature on travellers’ cheques.

“No one could believe Dave had Alzheimer’s because he was so young and fit. But fortunately we were soon referred to a wonderful consultant. His help and the right medication had a huge, positive effect on Dave.

“Dave is very intelligent but he needs a lot of support. His main problem is with short-term memory. He often gets lost in the house and won’t be sure which direction the kitchen is in.

"Support from carers’ groups such as Crossroads has been invaluable. I’ve worked with them to set up a support organisation for people like us.

"It’s important to get as much help as you can, and find specialists with an interest in your condition.”