Overview
If you're becoming increasingly forgetful, particularly if you're over the age of 65, it may be a good idea to talk to your GP about the early signs of dementia.
As you get older, you may find that memory loss becomes a problem. It's normal for your memory to be affected by age, stress, tiredness, or certain illnesses and medications. This can be annoying if it happens occasionally, but if it's affecting your daily life or is worrying you or someone you know, you should seek help from your GP.
What is dementia?
Dementia is a common condition. Your risk of developing dementia increases as you get older, and the condition usually occurs in people over the age of 65.
Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of the brain and its abilities. This includes problems with:
- memory loss
- thinking speed
- mental agility
- language
- understanding
- judgement
People with dementia can become apathetic or uninterested in their usual activities, and have problems controlling their emotions. They may also find social situations challenging, lose interest in socialising, and aspects of their personality may change.
A person with dementia may lose empathy (understanding and compassion), they may see or hear things that other people do not (hallucinations), or they may make false claims or statements.
As dementia affects a person's mental abilities, they may find planning and organising difficult. Maintaining their independence may also become a problem. A person with dementia will therefore usually need help from friends or relatives, including help with decision making.
Your GP will discuss the possible causes of memory loss with you, including dementia. Other symptoms can include:
- increasing difficulties with tasks and activities that require concentration and planning
- depression
- changes in personality and mood
- periods of mental confusion
- difficulty saying the right words
Most types of dementia can't be cured, but if it's detected early there are ways you can slow it down and maintain mental function.
How common is dementia?
According to the Alzheimer's Society there are around 800,000 people in the UK with dementia. One in three people over 65 will develop dementia, and two-thirds of people with dementia are women.
The number of people with dementia is increasing because people are living longer. It is estimated that by 2021, the number of people with dementia in the UK will have increased to around 1 million.
Why is it important to get a diagnosis?
An early diagnosis can help people with dementia get the right treatment and support, and help those close to them to prepare and plan for the future. With treatment and support, many people are able to lead active, fulfilled lives.
Symptoms
Dementia is not a disease but a collection of symptoms that result from damage to the brain. These symptoms can be caused by a number of conditions.
The most common cause of dementia is Alzheimer's disease.Common symptoms of Alzheimer's disease and other forms of dementia include:
- memory loss – especially problems with memory for recent events, such as forgetting messages, remembering routes or names, and asking questions repetitively
- increasing difficulties with tasks and activities that require organisation and planning
- becoming confused in unfamiliar environments
- difficulty finding the right words
- difficulty with numbers and/or handling money in shops
- changes in personality and mood
- depression
Early symptoms of dementia (sometimes called cognitive impairment) are often mild and may get worse only very gradually. This means you might not notice if you have them, and family and friends may not notice them or take them seriously for some time.In dementia, the brain becomes more damaged and works less well over time. The symptoms of dementia tend to change and become more severe.
For this reason, it's important to talk to your GP sooner rather than later if you are worried about memory problems.
The speed at which symptoms get worse, and the way that symptoms develop, depends on what's causing the dementia, as well as overall health. This means that the symptoms and experience of dementia can vary greatly from person to person.
Some people may also have more than one condition – for example, they may have Alzheimer's disease and vascular dementia at the same time.
While dementia has many symptoms that are similar whatever the cause, the different forms of dementia do have some particular symptoms.
Symptoms of vascular dementia
The symptoms of vascular dementia can sometimes develop suddenly and quickly get worse, although they can also develop gradually over many months or years.
People with vascular dementia may also experience stroke-like symptoms, including muscle weakness or paralysis on one side of their body.
Read more about vascular dementia.
Symptoms specific to dementia with Lewy bodies
Dementia with Lewy bodies shares many of the symptoms of Alzheimer's disease and people with the condition typically also experience the following:
- periods of being alert or drowsy, or fluctuating levels of confusion
- visual hallucinations
- becoming slower in their physical movements
Symptoms specific to frontotemporal dementia
Early symptoms of frontotemporal dementia typically include changes in emotion, personality and behaviour. For example, someone with this type of dementia may become less sensitive to other people’s emotions, perhaps making them seem cold and unfeeling.
They may also lose some of their inhibitions, leading to behaviour that is out of character, such as making tactless or inappropriate comments.
Some people with frontotemporal dementia also have language problems. This may include not speaking, speaking less than usual or having problems finding the right words.
Read more about frontotemporal dementia.
Symptoms in the later stages of dementia
As dementia progresses, memory loss and difficulties with communication often become very severe. In the later stages, the person is likely to neglect their own health and require constant care and attention.
Memory symptoms in later dementia
People with advanced dementia may not recognise close family and friends, they may not remember where they live or know where they are. They may find it impossible to understand simple pieces of information, carry out basic tasks or follow instructions.
Communication problems in later dementia
It is common for people with dementia to have increasing difficulty speaking and they may eventually lose the ability to speak altogether. It is important to keep trying to communicate with them and to recognise and use other, non-verbal means of communication, such as expression, touch and gestures.
Problems with mobility in later dementia
Many people with dementia gradually become less able to move about unaided and may appear increasingly clumsy when carrying out everyday tasks. Some people may eventually be unable to walk and may become bedbound.
Incontinence
Bladder incontinence is common in the later stages of dementia and some people will also experience bowel incontinence.
Eating, appetite and weight loss
Loss of appetite and weight loss are also common in the later stages of dementia. It's important that people with dementia get enough help at mealtimes to ensure they get enough to eat. Many people have problems with eating or swallowing and this can lead to choking, chest infections and other problems.
Who can get it
Dementia is caused by gradual changes and damage in the brain. The most common causes of dementia include diseases in which the brain cells degenerate and die more quickly than they would as part of the normal ageing process. The changes usually happen because of a build-up of abnormal proteins in the brain.
This damage leads to a decline in a person's mental and, sometimes, physical abilities.
The abnormal proteins are different in each type of these kinds of dementia. In most cases, dementia is not inherited directly from family members. However, frontotemporal dementia can sometimes run in families.
Causes of vascular dementia
Vascular dementia is caused when the brain's blood supply is interrupted.
Like all organs, the brain needs a constant supply of oxygen and nutrients from the blood to work properly. If the supply of blood is restricted or stopped, the brain cells will begin to die, leading to brain damage.
If the blood vessels inside the brain narrow and harden, the brain's blood supply can gradually become interrupted. The blood vessels usually narrow and become hard when fatty deposits build up on the blood vessel walls, restricting bloodflow. This is called atherosclerosis, and is more common in people who have high blood pressure, type 1 diabetes and those who smoke.
Atherosclerosis in the smaller blood vessels in the brain will also cause them to clog up gradually, depriving the brain of blood. This is known as small vessel disease.
If the brain's blood supply is interrupted rapidly during a stroke, this can also damage brain cells.
Not everyone who has had a stroke will go on to develop vascular dementia. However, if you have had a stroke or you have been diagnosed with small vessel disease, you may have an increased risk of developing vascular dementia.
Read more about the causes of vascular dementia.
Causes of Alzheimer's disease
Alzheimer's disease is the most common form of dementia. In Alzheimer's, the loss of brain cells leads to the brain shrinking.
Part of the brain known as the cerebral cortex is particularly affected by this shrinkage. The cerebral cortex is the layer of grey matter covering the brain. Grey matter is responsible for processing thoughts and many of the complex functions of our brains, such as storing and retrieving memories, calculation, spelling, planning and organising.
Clumps of protein, known as "plaques" and "tangles", gradually form in the brain. The plaques and tangles are thought to be responsible for the increasing loss of brain cells. Connections between brain cells are lost and less neurotransmitter chemicals are available to carry messages from one brain cell to another. The plaques and tangles also affect the chemicals that carry messages between brain cells.
Causes of dementia with Lewy bodies
Lewy bodies are small, circular lumps of protein that develop inside brain cells. It is not known what causes them. It is also unclear how they damage the brain and cause dementia.
It's possible that Lewy bodies interfere with the effects of two of the messenger chemicals in the brain called dopamine and acetylcholine. These messenger chemicals, which send information from one brain cell to another, are called neurotransmitters.
Dopamine and acetylcholine are thought to play an important role in regulating brain functions, such as memory, learning, mood and attention.
Dementia with Lewy bodies is closely related to Parkinson's disease. This is a condition, where part of the brain becomes more and more damaged over a number of years, leading to physical symptoms, such as involuntary shaking (tremor), muscle stiffness and slow movement. A person with dementia with Lewy bodies may also develop these symptoms.
Read more about dementia with Lewy bodies.
Causes of frontotemporal dementia
Frontotemporal dementia is caused by damage and shrinking in two areas of the brain. The areas of the brain affected are called the temporal lobe and the frontal lobe. This type of dementia is one of the more common types seen in people who are under 65 years of age.
In an estimated 20% of cases, people who develop frontotemporal dementia have inherited a genetic mutation from their parents.
Motor neurone disease is sometimes associated with frontotemporal dementia. It is a rare condition that damages the nervous system over time, causing the muscles to waste away.
Read more about frontotemporal dementia.
Less common causes of dementia
Other causes of dementia or dementia-like conditions may be treatable or non-progressive (meaning they do not continue to get worse with time). These can include:
There are also rarer causes of neurodegenerative dementia, including:
Diagnosis
If you are worried about your memory or think you may have dementia, it's a good idea to see your GP. If you're worried about someone else, you should encourage them to make an appointment and perhaps suggest that you go along with them.
If you are forgetful, it doesn't mean you have dementia. Memory problems can also be caused by depression, stress, drug side effects, or other health problems. It can be just as important to rule out these other problems or find ways to treat them. Your GP will be able to run through some simple checks and either reassure you, give you a diagnosis, or refer you to a specialist for further tests.
An early diagnosis gives you both the best chance to prepare and plan for the future, and receive any treatment. With treatment and support from healthcare professionals, family and friends, many people are able to lead active, fulfilling lives.
What to expect when you see your GP about dementia
Your GP will ask about your symptoms and other aspects of your health, and will give you a physical examination. The doctor will organise some blood tests and ask about any medication you are taking, as these can sometimes cause symptoms similar to dementia.
You will also be asked some questions or given some mental exercises to measure any problems with your memory or your ability to think clearly.
Find out more about the tests used to diagnose dementia.
Referral to a dementia specialist
Dementia can be difficult to diagnose, especially if your symptoms are only mild. If your GP is unsure about your diagnosis, they will refer you to a specialist such as a neurologist (an expert in treating conditions that affect the brain and nervous system), an elderly care physician, or a psychiatrist with experience of treating dementia.
The specialist may be based in a memory clinic alongside other professionals who are experts in diagnosing, caring for and advising people with dementia and their families.
It's important to make good use of your consultation with the specialist. Write down questions you want to ask, make a note of any medical terms the doctor might use, and ask if you can come back if you think of any more questions you want to ask. Taking the opportunity to go back can be very helpful.
The specialist will organise further tests, which may include brain scans such as a computerised tomography (CT) scan, or preferably a magnetic resonance imaging (MRI) scan.
If they are still not certain about the diagnosis, you may need further, more complex, tests.
Getting your dementia diagnosis
Once you have had the necessary tests, your doctor should ask you if you wish to know your diagnosis.
They should explain what having dementia might mean for you, and should give you time to talk more about the condition and ask any questions you may have.
Unless you decide otherwise, your doctor or a member of their team should explain to you and your family:
- the type of dementia you have, or if it is not clear, what the plan to investigate further will entail; sometimes, despite investigations, a diagnosis may not be clear, in which case the doctors will review you again after a period of time to reassess you
- details about symptoms and how the illness might develop
- appropriate treatments that you might be offered
- care and support services in your area
- support groups and voluntary organisations for people with dementia and their families and carers
- advocacy services
- where you can find financial and legal advice
You should also be given written information about dementia.
Questions to ask about your dementia diagnosis
In case you can't think of any questions to ask you're doctor, it may be worth asking:
- which type of dementia you have
- details about the tests or investigations you should have
- how long you will have to wait until you have the tests
- how long it will take to get the results of these tests
- what will happen after you get the results
Ongoing dementia assessment
Once you have been given a diagnosis, your GP should arrange to see you from time to time to see how you're getting on. Because dementia is a progressive condition, the doctor may arrange another appointment with the specialist, perhaps after six months or a year.
The GP and the specialist may also jointly prescribe medications that may be helpful in treating some of the symptoms of dementia. However, not everybody will benefit from these drugs.
An ongoing assessment of your dementia may be a good time to consider your plans for the future, perhaps including a Lasting Power of Attorney to take care of your future welfare or financial needs, or an advance statement about your future care.
Tests for diagnosing dementia
A range of tests and diagnostic procedures is needed to diagnose dementia, but there are several that are fairly commonly used to diagnose dementia.
These tests for dementia are mainly tests of mental abilities, blood tests and brain scans.
Tests of mental abilities to diagnose dementia
People with symptoms of dementia are often given questionnaires to help test their mental abilities, to see how severe any memory problems may be. One widely used test is the mini mental state examination (MMSE).
The MMSE assesses 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 exercises, each carrying a score with a maximum of 30 points. These exercises include:
- memorising a short list of objects and then repeating the list
- writing a short sentence that is grammatically correct, such as "the dog sat on the floor"
- correctly answering time-orientation questions, such as identifying the day of the week, the date or the year
The MMSE is not a test to diagnose dementia. However, it is useful for assessing the level of mental impairment that a person with dementia may have.
Test scores may be influenced by a person's level of education. For example, someone who cannot read or write very well may have a lower score, but they may not have dementia. Similarly, someone with a higher level of education may achieve a higher score, but still have dementia.
Blood tests for dementia
A person with suspected dementia may have blood tests to check their overall level of health. These blood tests can also rule out other conditions that may be responsible for their symptoms, such as thyroid hormones and vitamin B12 levels.
Read more about blood tests.
Dementia brain scans
Brain scans are often used for diagnosing dementia once other simpler tests have ruled out other problems. They are needed to check for evidence of other possible problems that could explain a person's symptoms, such as a major stroke or a brain tumour.
A computerised tomography (CT) scan can be used to check for signs of stroke or a brain tumour. However, unlike an MRI scan, a CT scan cannot provide detailed information about the structure of the brain.
The National Institute for Health and Care Excellence (NICE) recommends using a magnetic resonance imaging (MRI) scan to help confirm a diagnosis of dementia.
An MRI scan can provide detailed information about the blood vessel damage that occurs in vascular dementia, plus any shrinking of the brain. In frontotemporal dementia, the frontal and temporal lobes are mainly affected by shrinking.
Other scans and procedures to diagnose dementia
Other types of scan, such as a single photon-emission computed tomography (SPECT) scan or a positron emission tomography (PET) scan, may be recommended if the result of your CT or MRI scan is uncertain. These scans look at how the brain functions and can pick up abnormalities with the blood flow in the brain.
In some cases, an electroencephalogram (EEG) may be taken to record the brain's electrical signals (brain activity).
Benefits of an early diagnosis
Dementia is one of the health conditions that people are most frightened of. You may find it hard to accept that memory problems are affecting your life. If you're concerned about memory or other problems associated with dementia, it's normal to be reluctant to seek help and face such a diagnosis. However, there are potential benefits to getting medical advice.
Being diagnosed early can help you get the right treatments and find the best sources of support, as well as making decisions about the future.
A dementia diagnosis can help uncertainty
It may not be clear why you have problems with your memory or why your behaviour has changed. These problems may be because of dementia, or down to other reasons such as poor sleep, low mood, medications or other medical conditions. This uncertainty can be distressing for both you and your family and friends.
While a diagnosis of dementia can be devastating news, an explanation of what the problem is and what can be done about it may help you feel empowered and reduce some of the worry caused by uncertainty.
Some people find it helpful to discuss with doctors and nurses how the dementia may affect them or their loved one in the future, and there is advice available on how to stay independent with dementia and live well with dementia.
Getting treatments for dementia
Dementia is not a single condition – it refers to difficulties with thinking and memory that may be caused by several different underlying diseases. This is one reason why not everyone with dementia experiences the same problems.
Recognising that there is a problem, and discovering the underlying cause of the dementia, is important. This is because it will help guide your choice of treatments and services.
An early diagnosis of dementia may also be beneficial because some causes of dementia are treatable and fully or partially reversible, depending on the nature of the problem. Conditions such as some vitamin deficiencies, side effects of medications and certain brain tumours may fall into this category.
Alzheimer’s disease and dementia with Lewy bodies gradually damage the brain. Acetylcholinesterase inhibitor medicines have been shown to benefit in Alzheimer’s disease and dementia with Lewy bodies. These treatments, such as donepezil (Aricept), rivastigmine (Exelon) and galantamine (various brand names), improve symptoms by making the remaining brain cells work a bit harder. Memantine is another medication that can help in Alzheimer’s disease.
Although they will not cure your dementia, these medications can make a significant difference to your day-to-day living and functioning.
Treating high blood pressure, high cholesterol and poorly controlled diabetes is also important, as is stopping smoking and keeping to a healthy weight. These factors (known as risk factors) all contribute strongly to vascular dementia, and may make Alzheimer’s disease worse. Your GP can assess your risk factors, advise if treatment is needed and monitor you.
Medications for other conditions can be reviewed, in case they are having a negative effect on how well your mind is working.
Other support if you have dementia
Whether or not there are specific treatments for the cause of the dementia affecting you, having the right diagnosis is important for getting the right advice and support. There is a wide variety of help and information available both for people with dementia and their friends, relatives and carers.
This dementia support includes:
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Information on help available at home or in the community, such as from social services, day centres and respite care, community mental health teams, speech and language therapists, dietitians and occupational therapists.
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Advice regarding financial affairs and planning for the future.
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Advance care planning and help with setting up a Lasting Power of Attorney if the dementia is progressive. This allows a person to be involved in discussions about their future while they are still able to do so effectively.
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Information and support groups. There are numerous sources of information and advice that are easier to find if you have a diagnosis (for example, the Alzheimer’s Society and
FTD support group). Access to a support group is easier if a diagnosis is clear, because support groups can provide specialist information and links to others in similar situations.
Advice and support for other medical conditions
If doctors and nurses are aware that a person has a condition causing dementia, this is also helpful when treating other medical problems. This includes taking extra time to explain things to patients in a way they can understand, setting up safer ways of taking medication (for example, pill organiser boxes that help you remember when to take tablets), and understanding and offering extra support if someone has to come into hospital as an inpatient for another reason.
Dementia research and planning of dementia services
Getting the right diagnosis is also important for research and understanding more about the causes of dementia. Better recognition of how important and common the causes of dementia are is vital for planning services to provide the help and support people need, both locally and nationally.
What to do after a diagnosis of dementia
Whether your diagnosis came as a shock, or confirmed what you'd suspected for some time, it's important to plan ahead while you're still able to make clear decisions for yourself.
If you've just been diagnosed with dementia, you may be feeling numb, scared and unable to take everything in. Give yourself a little time to adjust. It might help to talk it through with family and friends.
Once the initial feelings have passed, it's time to move on and create an action plan for the future. Dementia is a progressive illness, so the sooner you take care of legal, financial and healthcare matters, the better. These are the key things to think about:
Get assessed
Your local authority has a duty to carry out a community care assessment to establish which of its services you need. To arrange an assessment, call the local authority social services department or see your GP.
For further information, read the Alzheimer's Society factsheet on community care assessment.
Services and support
Find out what's available locally so you're prepared and able to call on this support as and when you need it. Services arranged by local authorities vary from area to area, but may include home care services, equipment and adaptations for your home, and so on. Some services, such as community nursing, are arranged through the NHS. Ask your hospital consultant for details.
Charities such as the Alzheimer's Society, Age UK and Dementia UK provide services such as information, helplines, support groups, lunch clubs and home care schemes.
Making a will
It's a good idea to make a will if you haven't already. This ensures that when you die, your money and possessions go to people of your choosing. A person with dementia can still make or change a will, providing you can show that you understand what you are doing and what the effects of it will be. Your solicitor will decide if this is the case.
The Alzheimer's Society has a useful factsheet on managing legal affairs.
Putting your papers in order
Make sure that all your important papers can be easily found. These might include bank and building society statements, mortgage or rent documents, insurance policies, your will, tax and pension details, bills and guarantees.
Consider setting up direct debits or standing orders for your regular bills. This will mean that they are paid automatically from your bank account each month.
Claiming benefits
Check that you are claiming all the benefits that you're entitled to. In particular, check:
Other benefits you may be eligible for include income support or minimum income guarantee, incapacity benefit, housing benefit and council tax relief.
The Alzheimer's Society factsheet on benefits can tell you what's on offer and how to claim them.
Lasting power of attorney
You can appoint one or more people as 'attorneys' to manage your affairs, including your finances, property and medical treatment, should it become necessary. You can choose anybody you trust to be your attorney, usually a close friend or family member, but they must be over 18.
Advance care planning
You may wish to make an advance care plan, so you can have a say in your future medical care. It enables you to refuse, in advance, a specific medical treatment or procedure, should you become unable to decide for yourself in the future.
Take care of your mental health
If you're depressed or feeling very down, talk to your GP. Depression is very common in early dementia and there are a range of treatments, including talking treatments, that can help.
Staying well
As with other long-term conditions, it's important to look after yourself by stopping smoking, eating healthily and taking regular exercise. Ask your GP if you would benefit from flu and pneumonia vaccination.
Memory books
Memory books can be a helpful way of stimulating your memory and reconnecting you with your loved ones in the future. Essentially, it's a "This is Your Life" compilation of photographs, notes and keepsakes from your childhood through to the present day. It can be either a physical book or a digital system, like a photo book.
Treatment
Most types of dementia cannot be cured and will gradually cause more severe problems.
But there are important exceptions, including dementia caused by vitamin and thyroid hormone deficiencies, which can be treated with supplements.
Some causes can be treated surgically – for example, some brain tumours, excess fluid on the brain (hydrocephalus) or head injury.
For types of dementia that involve degeneration of nerve and brain tissue, you can take action to prevent further damage. It's possible to do this by reducing dementia risk factors, such as by managing high blood pressure, high cholesterol, type 1 diabetes and stopping smoking.
For dementia that currently cannot be cured, some types of medicine may prevent symptoms getting worse for a period of time. These medicines are usually given to people in the early and middle stages of the disease, to try to maintain or improve their independence.
It is fairly common for people with dementia to have depression. If you have dementia and depression, your GP may consider prescribing an antidepressant medication, or get you an appointment with a psychiatrist who specialises in working with older people.
Perhaps the most important type of treatment for anyone with dementia is the care and support they receive from healthcare professionals, family and friends.
If you or a loved one have been diagnosed with dementia, you should start planning the future care that will be required.
Discuss the options, such as Power of Attorney, with the people concerned – your family, your GP and your local authority. The Alzheimer’s Society is also a valuable source of information and support. It has branches in Wales, England, and Ireland.
Finally, there are things you or your loved one can do to maintain memory, independence and function when you have dementia.
Medicines to treat dementia
A number of medications have been shown to be effective in treating mild, moderate and severe dementia. Depending on the particular type of dementia, the severity of the condition, or any other issues observed by the doctor, you may be prescribed medications. However, not everyone will benefit from these drugs.
Aricept (donepezil) and other acetylcholinesterase inhibitors
Acetylcholinesterase inhibitors (such as galantamine, and rivastigmine) are used to treat mild to moderate Alzheimer’s disease. They can also be used to treat dementia with Lewy bodies, and can be particularly effective at treating hallucinations.
Common side effects of acetylcholinesterase inhibitors include nausea and vomiting, but these usually get better after two weeks of taking the medication.
Acetylcholinesterase inhibitors can sometimes slow down your heartbeat, so you may need to have an electrocardiogram (ECG) both before and during treatment. An ECG is a procedure that records the rhythms and electrical activity of your heart.
Memantine hydrochloride
Memantine is a medicine that works by blocking the effects of a chemical in the brain. It is used to treat severe Alzheimer’s disease, but can also be given to people with moderate symptoms if they don't respond well to acetylcholinesterase inhibitors.
Antipsychotics
Antipsychotics are medicines that are sometimes used to treat people who's behaviour is disruptive – for example, they tend to become aggressive or agitated. They are normally used for a short period of time and with caution, because they can increase the risk of cardiovascular problems, cause drowsiness and tend to make other symptoms of dementia worse.
There is some evidence that antipsychotics can cause a range of serious side effects for people who have dementia with Lewy bodies. These include:
- rigidity
- immobility
- inability to communicate
In most cases, antipsychotics are only used when there are severe symptoms of challenging and disruptive behaviour that pose harm. Before being given antipsychotic drugs, the benefits and risks of treatment should be fully discussed between health and care professionals, family carers, and, if possible, with the person being prescribed the drugs.
If antipsychotics are used, they will be prescribed at the lowest possible dose and for the shortest possible time. The health of anyone taking antipsychotics needs to be carefully monitored.
Antidepressants
Depression is an issue for many people with dementia, perhaps linked with frustrations caused by the condition.
Depression can sometimes make the memory of a person with dementia worse. Antidepressants may be prescribed.
Psychological treatments for dementia
Psychological treatments do not slow down the progression of dementia, but they can help with the symptoms.
Cognitive stimulation and reality orientation therapy
Cognitive stimulation involves taking part in activities and exercises designed to improve memory, problem-solving skills and language ability.
Reality orientation therapy reduces feelings of mental disorientation, memory loss and confusion, while improving self-esteem.
Evidence suggests that cognitive stimulation can improve thinking and memory skills in people with dementia. It is currently the only psychological treatment directly recommended by the National Institute for Health and Care Excellence (NICE) to help people with mild or moderate dementia.
Reality orientation may also be beneficial in some cases, but the benefits can be small and are often only apparent with continued effort.
Validation therapy
Validation therapy focuses on dementia from an emotional, rather than factual, perspective. It is based on the principle that even the most confused behaviour has some meaning for the person.
For example, if someone with dementia becomes agitated at a certain point every day because they believe their mother is going to come and pick them up, telling them that their mother is no longer alive could cause them to become more agitated and distressed.
With validation therapy, the response to this situation might involve not correcting the person and accepting their concerns, but talking to them about the issue and gradually steering the conversation in another direction. In theory, this should reduce their distress, while acknowledging that their thoughts and feelings have meaning for them.
However, while validation therapy may sometimes be used as part of the treatment of someone with dementia, there is not enough evidence about the effectiveness of this approach to be certain whether it is beneficial.
Behavioural therapy
Behavioural therapy tries to find reasons for difficult behaviour. 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, encouraging them to take part in regular physical exercise may help to decrease their restlessness.
Behavioural therapy can be used to treat many of the behavioural problems that are associated with dementia, such as depression, aggression and delusional thinking. Behavioural therapy is often given by a trained friend or relative (usually the main family carer), or by an employed carer, but is supervised by a healthcare professional.
Prevention
There is no certain way to prevent all types of dementia.
However, a healthy lifestyle can help lower your risk of developing dementia when you are older. It can also prevent cardiovascular diseases, such as strokes and heart attacks.
To reduce your risk of developing dementia and other serious health conditions, it's recommended that you:
- eat a healthy diet
- maintain a healthy weight
- exercise regularly
- don't drink too much alcohol
- stop smoking (if you smoke)
- make sure to keep your blood pressure at a healthy level
Diet and dementia
A low-fat, high-fibre diet including plenty of fresh fruit and vegetables and wholegrains can help reduce your risk of some kinds of dementia.
Limiting the amount of salt in your diet to no more than six grams a day can also help. Too much salt will increase your blood pressure, which puts you at risk of developing some types of dementia.
High cholesterol levels may also put you at risk of developing some kinds of dementia, so try to limit the amount of food you eat that is high in saturated fat.
Read more about eating healthily.
How weight affects dementia risk
Being overweight can increase your blood pressure, which increases your risk of getting some kinds of dementia. The risk is higher if you are obese. The most scientific way to measure your weight is to calculate your body mass index (BMI).
You can calculate your BMI using the BMI healthy weight calculator. People with a BMI of 25-30 are overweight, and those with a BMI above 30 are obese. People with a BMI of 40 or more are morbidly obese.
Read more about losing weight.
Exercise to reduce dementia risk
Exercising regularly will make your heart and blood circulatory system more efficient. It will also help to lower your cholesterol and keep your blood pressure at a healthy level, decreasing your risk of developing some kinds of dementia.
For most people, a minimum of 150 minutes (2 hours and 30 minutes) of moderate-intensity aerobic activity each week, such as cycling or fast walking, is recommended.
Read more about exercising regularly.
Alcohol and dementia
Drinking excessive amounts of alcohol will cause your blood pressure to rise, as well as raising the level of cholesterol in your blood.
Stick to the recommended limits for alcohol consumption to reduce your risk of high blood pressure, cardiovascular disease and dementia.
To keep your risk of alcohol-related harm low, the NHS recommends:
- not regularly drinking more than 14 units of alcohol a week
- if you drink as much as 14 units a week, it's best to spread this evenly over three or more days
- if you're trying to reduce the amount of alcohol you drink, it's a good idea to have several alcohol-free days each week
Regular or frequent drinking means drinking alcohol most weeks. The risk to your health is increased by drinking any amount of alcohol on a regular basis.
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.
Read more about drinking and alcohol.
Stopping smoking could reduce dementia risk
Smoking can cause your arteries to narrow which can lead to a rise in your blood pressure. It also increases your risk of developing cardiovascular diseases, cancer and dementia.
Stop Smoking Wales offers advice and encouragement to help you stop smoking. You can call on 0800 250 6885.
Your GP or pharmacist will also be able to give you help and advice about giving up smoking.
Read more about stopping smoking.
Can it be cured?
The concept that dementia is a disease rather than an inevitable side effect of ageing (so-called senile dementia) has been around for over 100 years.
But after over a century of research, there's still a lot we don't know about the condition and if dementia can be cured.
Dementia charities have argued, with some justification, that there is a lack of funding for research into dementia compared with research into treatments for other long-term conditions, such as cancer.
However, many areas of research may lead to more effective treatments and, possibly, a cure for dementia. Inevitably, such treatments are many years, probably decades, of hard work away.
Even without a cure, there is reason to believe that a continuous improvement in the standards of dementia care can be achieved.
Here are some of the current promising areas of dementia research.
Gene therapy for dementia
Gene therapy is a field of medicine where genetic material is used to try to prevent or cure a disease.
While the theory behind gene therapy has been discussed since the 1970s, this is a very new area of research, and there is currently only one licensed treatment available in the UK.
In dementia, gene therapy aims to stop brain cells dying, or possibly replace them, but it may be several years before human trials can begin.
Dementia vaccine
Some researchers are studying what has been termed a dementia vaccine. This would be a medication to "teach" the immune system to recognise the abnormal deposits of protein (such as amyloid plaques) in Alzheimer's disease that are thought to cause the damage to brain cells.
The immune system would then attack these plaques, which may slow the progression of the condition. Researchers are studying several different ways of doing this, ranging from vaccines to infusions of antibodies.
Stem cells and dementia
Stem cells are "building block" cells. They can develop into many different cell types, including brain cells.
Two main avenues of research into the use of stem cells in dementia are being explored.
First, stem cells can be manipulated so they mimic some of the body's processes that may cause the development of dementia. Doing this will help scientists to better understand dementia. It also allows researchers to predict the effects of potential dementia drugs more accurately.
Second, researchers hope that one day, stem cells could be used to develop new brain cells to replace the cells that are damaged by dementia.
Psychological interventions for dementia
These advances in complex technology are important, but there have also been developments in helping people to deal with their psychological symptoms. These include:
- cognitive stimulation – where people take part in activities and exercises designed to improve their memory, problem-solving skills and language ability
- validation therapy – where people are encouraged to explore what things were like for the person in the past and how this relates to the way they are feeling now
Research into improving these approaches continues, and other new approaches are also being explored. These include social media support groups and memory improvement apps.
Another goal of research into psychological interventions is to find ways to help manage challenging behaviour in people with dementia without having to resort to antipsychotic medicines.
One method that is providing promising results is known as functional analysis. This is based on the theory that the best way to manage challenging behaviour is to understand the motivation driving it. People with dementia often act in challenging ways because they feel their needs are not met, and that makes them upset.
Join dementia research
There are dozens of dementia research projects going on around the world; many of these are based in the UK. You may be able to help scientists better understand the disease by taking part in research.
This includes studies looking at how our genes, or even our lifestyle, may play a role in our risk of developing dementia.
You can sign up to take part in trials on the NHS Join Dementia Research website.
Living with
Keeping an active social life is key to helping someone with dementia feel happy and motivated.
There are clubs and activities designed to help people in the same situation, which can be rewarding for both the person with dementia and their families and carers.
Everyone needs a sense of purpose and to enjoy themselves during the day. Encouraging someone with dementia to do something creative, some gentle exercise, or take part in an activity helps them to realise their potential, which improves their self-esteem and reduces loneliness. People with the early stages of dementia may enjoy walking, attending gym classes for older people, or meeting up with understanding and supportive friends.
If you care for someone who has dementia, a shared activity can also give you a chance to do something that makes both of you happier and able to enjoy quality time together.
Multisensory activities can help dementia
If the person you care for has become very withdrawn, you may want to explore different ways of connecting with them. The Alzheimer's Society has more advice on how people with dementia can keep active and stay involved, by gardening, baking, doing puzzles and more. There are also ideas for remembering the past in a happy way, such as visiting a favourite place or putting together a memory box.
A multisensory approach to interacting is particularly important when someone has advanced dementia. This is because bright colours, interesting sounds and tactile objects can all catch their attention in a way that other activities, such as making conversation or reading, may not any more.
Sensory gardens
A growing number of care homes now offer a sensory garden for residents to spend time in. They are usually wheelchair-friendly and with carefully chosen plants and flowers to attract local wildlife. A sensory garden is a garden or other plot designed to provide visitors with different sensory experiences. For example, a sensory garden may feature:
- scented and edible plants
- sculptures and sculpted handrails
- water features that residents can hear and touch
- textured touch-pads
- magnifying glass screens
- Braille and audio induction loop descriptions
Sensory gardens can benefit older adults by encouraging them to spend more time outside. Their design and layout aim to provide a stimulating journey through the senses, heightening a person's awareness of what's around them.
Getting out and about
If you'd like to venture further from home, but are worried about managing the person with dementia's needs, there are organisations that can support you both. Dementia Adventure offers outings and short breaks, such as barge sailing and woodland walks, designed for people living with dementia and their carers to enjoy together.
Memory cafes
A good way to meet other people with dementia and their carers is to find a "memory cafe" near you. Memory cafes offer an informal setting for people who are affected by memory problems and their carers to get support and advice.
Memory cafes operate on a drop-in basis, giving people the chance to exchange experiences and information, and receive practical and emotional support. Some memory cafes offer activities, as well as advice and refreshments.
The cafes are run by trained volunteers with the support of health professionals, and usually meet monthly for a couple of hours, although some meet fortnightly. Memory cafes are different from a "memory clinic", which is an NHS dementia service that involves assessing and diagnosing the condition, and requires a referral from a GP or hospital.
Find a memory cafe near you.
'Singing for the brain'
Singing groups offer people with dementia and their carers a chance to sing and socialise with other people in the same situation.
The Alzheimer's Society runs Singing for the Brain groups around the country. Singing has been shown to improve the quality of life of people with dementia. Many people with dementia and their carers have said that it helps them feel better.
Chreanne Montgomery-Smith, of the Alzheimer's Society, helped devise Singing for the Brain sessions in 2003 after noticing how some people with dementia in a nursing home responded to singing.
Chreanne explains: "I started doing a range of activities in the nursing home. One of them was a quiz game, which involved playing familiar tunes. The first week I did it nobody sang, and the second week a few people joined in. By the third week, everybody was singing.
"One lady sang so much – she knew every song in the quiz, and remembered and sang them all. She felt very proud. And she was somebody who didn't know her own name. It made me realise that people with dementia have a special ability to remember songs. It seemed to me a way of giving people confidence."
There are now around 200 Singing for the Brain groups across England, Wales and Northern Ireland. They are free and open to anyone who has been diagnosed with dementia.
Each session starts with warm-up exercises, which include physical movements. This might be rolling a small bean bag up one leg, passing it to your other hand and rolling it down the other, or clapping along to a song. All kinds of songs are used, and there are percussion instruments, such as drums, that people can play.
"It seemed to me a way of giving people confidence," Chreanne Montgomery-Smith, co-founder of Singing for the Brain
Finding a dementia singing group
Singing for the Brain sessions take place in community buildings, such as church halls. To find a group near you, call the Alzheimer's Society on 0300 222 1122. If there is no Singing for the Brain session in your area, you can ask your GP, local authority or charities such as Age UK whether they know of any local singing groups.
"Singing for the Brain is mainly about engaging people and helping them to feel that life is worthwhile," says Chreanne. "I think the benefits are in confidence, self-esteem and friendship. Even if people with dementia can't talk, they may be able to sing, whistle, clap or tap their feet. You can always sing at home. Sing along to a CD, or to hymns or other songs on the telly."
Advice for carers
This section contains information on the following topics:
- Caring for someone with dementia at home
- Care homes
- What to expect from social services and the NHS
- Money matters
- Managing legal affairs
- End of life planning
Caring for someone with dementia at home
With the right support, someone who has dementia may be able to continue living at home for a long time.
Although having dementia can reduce a person’s ability to live independently, there is a variety of support available to help them. If you care for someone with dementia and want to help them to continue to live at home, you can find advice and resources below in the following areas:
- Feeding
- Dressing
- Washing and bathing
- Moving and handling
- Mobility
- Safety in the home
- Telecare technology
- Advance care planning
Watch this video from the Alzheimer’s Society featuring 92-year-old Rose, who has dementia and lives in her own flat, supported by family and carers.
Support services that can help people with dementia
For some people with dementia, a valuable form of help could come from a paid careworker to come in to their home to help out with practical, hands-on tasks, such as cleaning, cooking, shopping and personal care.
Support can also come in the form of assistance from the local authority, such as a Meals on Wheels service or laundry and library services. Ask your local authority for more details.
Helping someone with dementia to feed themselves
When it comes to mealtimes, a person with dementia may stop recognising the food in front of them. They may also struggle to use a knife and fork if their dementia affects their physical co-ordination, and find it hard to chew or swallow food. Further behaviour problems can result in the person with dementia refusing help with eating.
These factors can result in a limited diet for someone with dementia, which, in extreme cases, can lead to malnutrition. However, there are steps that can be taken to prevent this from happening.
For tips on supporting a person with dementia at mealtimes and an explanation of why changes in eating habits can occur, read this factsheet from Alzheimer’s UK about eating and drinking.
Dressing someone with dementia
As dementia progresses, a person’s concentration and co-ordination decreases and they need more help with dressing. It’s important that they are able to carry on deciding what they wear for as long as possible, but if they do need help, try to offer it with tact and sensitivity.
Make sure the person with dementia wears clothes that are suitably warm or cool, depending on the weather, that they have on layers if necessary and that they are dry.
If you’re helping them to buy new clothes, encourage them to choose clothes that are easier to manage – for example, clothes that have poppers instead of buttons.
Read this factsheet on dressing from the Alzheimer’s Society, which includes tips for helping someone to dress and helping them to choose comfortable clothing.
Helping someone with dementia to wash and bathe
For most adults, washing is a personal and private activity, so it can be hard for the person with dementia to adjust to having someone help them with this. It can also be challenging for you as a carer to adjust to this level of caring, if you’re new to it. Try to approach it in a positive and open-minded way, as this will help to prevent it from being a difficult experience for either of you.
There are also practical things to consider. A person might have difficulty getting in and out of the bath, lose recognition of the importance of personal hygiene, or resist help because of a desire for dignity and autonomy.
This factsheet from the Alzheimer’s Society on washing and bathing has tips for helping someone to wash, including encouraging independence and creating a relaxing environment.
Help with sitting, standing, moving and lifting
If you care for someone with advanced dementia, there will be many situations where you will need to physically handle them – for example, to help them in and out of bed, the bath, going to the toilet, or perhaps to lift them up if they have fallen.
However, unless you take the necessary precautions while lifting or moving someone, you may be at risk of injury.
If you start having to move someone regularly because they are unable to move themselves, contact your local authority to ask for a care and support needs assessment for the person with dementia. This is the best way to access help, equipment and training for moving a person.
Mobility problems in dementia
If the person with dementia develops mobility problems, they may benefit from using a wheelchair outside the home. They are more likely to need an attendant-propelled wheelchair, in which case, as a carer, you will need to consider what works for you as well as the person sitting in it. This includes issues such as whether you want a wheelchair that can be folded to fit into a car.
Safety at home and dementia
Someone with dementia is more at risk of being involved in accidents at home, particularly as the dementia progresses. This is because their sense of balance and ability to react quickly is reduced. Their memory and judgement are also both increasingly affected.
Stress and confusion experienced by the person with dementia, or tiredness on the part of their carers, can also increase the chances of an accident occurring. Furthermore, having memory loss and difficulty learning new things means that someone with dementia may forget where they are, where things are and how things work.
For all these reasons, it’s worth taking simple steps to help the person with dementia to navigate their home more easily and safely. But try not to make major changes overnight, as this can be alarming or upsetting to the person with dementia.
Read this factsheet from the Alzheimer’s Society about safety in the home. It includes tips on avoiding accidents by looking at areas such as lighting, equipment, dangerous substances and te risk of fire at home.
Installing specialist equipment and facilities can go a long way towards helping someone with dementia to continue living at home safely.
Read this factsheet from the Alzheimer’s Society about equipment, adaptations and improvements to the home. The best way to get this equipment is by getting a care and support needs assessment for the person you're looking after.
How telecare technology can help with dementia
Telecare is a term used to describe personal alarms and health-monitoring devices that can help people with disabilities and long-term conditions to live more independently. Telecare can be particularly helpful if you’re caring for someone with dementia.
Telecare and telehealth services can give peace of mind to the person with dementia and their relatives, by confirming that they are safe at home and their health is stable. For example, telecare can help reassure you – from a distance – that the person you care for has got out of bed (through a bed pressure sensor) but hasn’t left the house (front door sensor).
Advance care planning for people with dementia
"Advance care planning" is a way to make sure that people get the support they want. Advance care planning means that everyone involved in looking after someone with dementia, including doctors, care workers, family carers and the person themselves, needs to think about, discuss and then record the person’s wishes regarding their ongoing care.
By ensuring that everyone understands what the person's preferences are, it is more likely that the person will be supported as they would like to be, even if they are unable to say this in the future. This is particularly important for someone with dementia, as it can reduce anxiety, which can be a cause of challenging behaviour.
Care Homes
Care homes give people with dementia the chance to live in a home environment with trained staff on hand to look after them day and night. A care home can offer similar kinds of care to what family members provide at home, such as help with washing, dressing and providing meals.
Care homes for older people are divided into those that offer "personal care" and those that offer "nursing care". A care home that offers personal care will ensure residents' basic personal needs – such as meals, bathing, going to the toilet and medication – are taken care of. In some homes, more able residents have greater independence and take care of many of their own needs.
Choosing a dementia care home
In most cases, the first step towards choosing a care home for someone with dementia will be to get an assessment from the local authority social services. This will make clear whether or not they need a place in residential care and what other options might be available.
Social services will be able to provide information about residential care homes and may be able to assist with finding a suitable home.
Even if the person with dementia is unlikely to be eligible for financial help with residential care home fees, it could still be worth involving social services. The information social services can give you, along with the assessment, is likely to help in making vital long-term decisions about care.
You may also want to consider:
- The location of a care home – this will be more relevant for some people than others. Would the person you're looking after prefer to be near family and friends? Are there shops, leisure or educational facilities in the area? Is the area noisy?
- Is the care home you're looking at focused on the individual needs of residents, and will they provide for those needs? Or do they insist residents adapt to a particular routine?
- What contact with the community does the care home have?
- What arrangements are there for visitors? Can residents come and go as they please, as far as it is safe to do so? Are staff able to help residents go out? Are outings arranged?
- What involvement would you have in the care home? How would you communicate with staff? Are there any support groups or regular meetings?
- If safety and security are issues for the person you care for, what arrangements for supervision can the care home provide?
- Will the care home meet specific religious, ethnic or cultural needs? Will the correct diet be provided? Will the person's language be spoken? Will there be opportunities to participate in religious activities?
Care home inspection reports
Care homes for adults are regulated by Healthcare Inspectorate Wales. As well as talking to social services, you can talk to your GP, district nurse, palliative care team or consultant to find out what is available in your area. Voluntary organisations such as Independent Age, Age UK or Mind may also be useful.
If you are relying on local authority funding, you will not be able to be cared for in a home that costs more than the authority is prepared to pay for, unless you or your family can pay the difference.
Whether you choose to receive care at home, in a care home or in a hospice, you should be assessed for NHS continuing healthcare. Continuing healthcare is professional care given to meet the physical or mental health needs of adults with a disability, injury or illness over an extended period of time.
It means a package of care is arranged and funded by the NHS and is free of charge to the person receiving the care. This is sometimes called fully funded NHS care.
Dementia, social services and the NHS
The NHS and local councils can help people with dementia to get information and services to help them.
If you are diagnosed with dementia, your future health and social care needs will need to be assessed, and a care plan created to set out how your needs will be met.
If you are eligible for help, your social and personal care will come from the social services department of your local authority or council, while the healthcare you need will be provided by the NHS.
You may have to pay for all or some of the help arranged by social services, depending on your income and savings, while the NHS care you receive will largely be free.
The services you get will depend on your own circumstances and what the local council or NHS is willing to pay for.
Social services and dementia
Social services can help with your personal care and day-to-day activities. For example, social services may offer to provide home care assistants to help you with washing and dressing, laundry services, meals on wheels, frozen food delivery, aids and adaptations, and help with claiming benefits.
An assessment is required to access the services you need. If you haven’t already had an assessment by health and social services, contact your local authority or GP and ask for the social services department to carry out an assessment of your care and support needs. Once you’ve put in your request, a care manager will contact you or your family to carry out a telephone assessment, or to arrange an appointment to see you at home and assess your needs.
NHS support for dementia
NHS help for dementia includes the treatment you receive from your GP and hospital. It can also include other types of healthcare such as community mental health nurses, physiotherapy, audiology (hearing care), optometry (eye tests), podiatry (foot care), speech and language therapy, and mobility specialists.
The NHS will also fund any nursing care you receive in a nursing home, although nursing home placement may not be completely free.
The NHS provides free continuing healthcare, for people with dementia whose care needs relate mainly to their health. If you’re awarded continuing healthcare, the NHS will provide and fund your entire care package – including your healthcare and social care – whether you live in a care home or in your own home. If you live in a care home, NHS continuing healthcare covers your residential costs and your food, as well as any nursing care.
To qualify for NHS continuing healthcare, you need to have an individual assessment, this may have already happened. To check whether you’ve had a continuing healthcare assessment, or to request one, contact your local health board.
Tips for getting help and support for dementia
Getting help and support for dementia can be made difficult by the memory, functional and emotional problems caused by dementia. And it can be complicated for carers to act on behalf of a person with dementia. These three tips may help:
- Keep copies of forms and letters and a record of who you’ve seen. It will help you keep track of your progress and be useful for the health and social care professionals you meet.
- Be prepared to be persistent to get what you want. Health and social care professionals may not always communicate with each other as well as they should, and you may find you have to explain your situation each time you meet a new professional.
- Consider using an advocacy organisation. Advocacy organisations can help you access services and give you advice about your rights, particularly if you find meetings and talks with health and social care professionals quite intimidating. The Alzheimer’s Society has a nationwide network of advocates.
People with dementia need to organise their financial and legal affairs while they are able to make decisions.
It's a good idea to get professional advice about wills, pensions, how to manage any financial assets you have, and how to ensure any partner or children are protected and financially secure.
Dementia and managing money
If you have dementia, you may want to consider appointing a trusted person to manage your money in case you are no longer able to do so yourself. This is called Lasting Power of Attorney, and can also enable the nominated person to make decisions about health and welfare matters on your behalf.
If you are looking after someone with dementia, you may find yourself helping them manage their daily finances and paying their bills. This may be dependent on the person's disability or mental capacity, and should be discussed with them in advance.
Benefits for people with dementia
If you care for someone with dementia, check you are both getting all the benefits and tax credits you are entitled to. For example, you may be able to claim Personal Independence Payment or Attendance Allowance for the person with dementia, and Carer's Allowance for the carer. You or the person you look after may be entitled to a discount on your council tax.
To find out more, read the Money Advice Service's information on managing money when someone is in ill health.
You can get advice and help about claiming benefits from your local social security office, voluntary organisations and support groups.
Dealing with bank accounts for someone with dementia
If you have Power of Attorney or have been made an appointee or deputy, you may be able to manage someone's banking activities. For this to happen, you need to have had your power of attorney registered to be recognised as a person's appointee or deputy.
The bank or building society will require proof of your legal standing on managing someone's finances before they allow you access. They will also need to see proof of the name and address of the person you are caring for.
Restrictions may be in place regarding how you are able to manage the account. For example, if someone has been made an appointee, they can only deal with money from the Department for Work and Pensions (DWP).
You can also apply for a third party mandate to deal with a bank, building society or other financial account on someone's behalf. This allows you to deal with someone else's banking for them in branch if they cannot attend the bank themselves. Contact the account holder's bank for more information about setting up a third party mandate.
Read more about informal help to manage your money from the Money Advice Service.
Managing legal affairs
Symptoms of dementia will become worse over time. That's why it's important to get an early diagnosis and start making plans for the future as soon as possible.
These plans should include ensuring your wishes are upheld should you not be able to make decisions for yourself – also called lacking or impaired "capacity".
Consent to treatment if your capacity is impaired by dementia
The Mental Capacity Act is designed to protect people who lack the mental capacity to make decisions for themselves.
Under the Act, a person is presumed to have capacity "unless all practical steps to help him (or her) to make a decision have been taken without success".
Giving your consent means 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.
Find out more about consent issues.
Power of attorney for people with dementia
There may be a time in the future when your symptoms mean 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 are unable to. This is known as power of attorney.
There are three different types of power of attorney:
- Lasting Power of Attorney (LPA) for matters relating to property and financial affairs
- LPA for matters relating to the person's welfare (including their health)
- Enduring Power of Attorney (EPA). EPAs made before October 1 2007 are still valid and can only be registered if the person is losing, or has lost, their mental capacity, and must be registered by the attorney
The LPA has to be made in a fixed legal way and is not legally recognised until it is registered with the Office of the Public Guardian.
The person making a power of attorney for property and affairs can register the LPA while they are able to make decisions for themselves. A personal welfare LPA may only be registered when a person has lost capacity. Separate powers of attorney can be made for either LPA, or both LPAs can be appointed to the same attorney.
Advance care planning in dementia
After you're first diagnosed with dementia, you might want to consider drawing up an advance decision. An advance care plan makes your treatment preferences known now in case you are unable to do this in the future.
Subjects covered by an advance decision can include:
- what treatment you would consider having, and in what circumstances
- what types of treatment you would never wish to have, no matter the circumstances
- what type of end of life care you would wish to have – for example, 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 advance decision, such as assisted suicide. Your care team will be able to provide you with more information and advice about advance decisions.
Wills
A will lets you decide what happens to your assets (your money, property and possessions) after your death. It's the best way of ensuring your wishes are carried out the way you want when you die.
If you die without making a will, the government will decide what happens to your assets. You can write your will yourself, but it's a good idea to get legal advice. It will need to be formally witnessed and signed to make it legally valid.
GOV.UK recommends that when writing your will, it should include:
- who you want to benefit from your will
- who should look after any children aged under 18
- who is going to sort out your estate and carry out your wishes after your death (your executor)
- what happens if the people you want to benefit die before you
You should keep your will safe and tell your executor where it is.
For more information, read GOV.UK advice on writing your will or go to Citizens Advice. You may also want to check out the Money Advice Service information on making and changing a will and planning your estate.
End of life planning
People with dementia often live for many years after their diagnosis. The symptoms of dementia are likely to get worse over time, and it’s wise to make plans well in advance of a person's condition deteriorating.
People with an incurable illness such as dementia, may be offered so-called end of life care (or palliative care) so they are able to live as well as possible until their death. End of life care also includes support for family members. Care can be provided at home, in a hospice, a care home, or hospital.
Everyone who has been diagnosed with dementia should have a care plan drawn up with healthcare professionals. End of life care should be a key part of this dementia care plan.
Details of end of life care included in the dementia care plan might include the person with dementia specifying where they would like to die, and how they'd like to be treated. The dementia care plan should also provide some support for carers, who will be grieving around the time of death.
Read about coping with bereavement.
Preferences for end of life care should ideally be discussed and set out soon after a diagnosis of dementia. Actions such as making an advance statement of wishes should be thought about as soon as possible.
End of life planning should also consider financial affairs and legal planning.
Care at home for people with advanced dementia
Palliative care services may sometimes be offered in the home, rather than in a hospice building. "Hospice-at-home" services have staff that are usually on call 24 hours a day and can visit people at home.
Your GP can arrange for community palliative care nurses to provide care in the home. Your local authority may also provide social care services and equipment for the home. .
Hospice care for advanced dementia
Hospices are specialist residential units run by a team of doctors, nurses, social workers, counsellors and trained volunteers. They are smaller and quieter than hospitals and feel more like a home.
Hospices can provide individual care more suited to individuals in a gentler, calmer atmosphere. There is no charge for hospice care, but patients must be referred to a hospice through their GP.
Palliative care in a care home
Palliative care is available in residential care homes. If someone with dementia is already in a residential home, they may want to stay there for their palliative care. This may make them more comfortable and less distressed than having to go into hospital, unless that is necessary.
Palliative care for dementia as a hospice day patient
If someone who has dementia prefers to remain living at home, they may be able to visit a hospice during the day. This means they can receive the care and support they need without permanently leaving their home.
As a day patient, they will be able to access more services than could be offered if they stayed at home. Such services might include creative and complementary therapies and rehabilitation, as well as nursing and medical care. They will also meet other patients. Hospices often provide transport to and from the hospice.
Please visit our Dementia Guide for more information on Dementia.
The information on this page has been adapted by NHS Wales from original content supplied by NHS website nhs.uk
Last Updated:
09/03/2022 09:49:49