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22 min read

Dementia

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About dementia

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 doctor 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 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 doctor.

But dementia isn't just about memory loss. It can also affect the way you speak, think, feel and behave.

It's also important to remember that dementia is not a natural part of ageing.

What is dementia?

Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning. This may include problems with:

  • memory loss
  • thinking speed
  • mental sharpness and quickness
  • language
  • understanding
  • judgement
  • mood
  • movement
  • difficulties carrying out daily activities

There are many different causes of dementia. People often get confused about the difference between Alzheimer's disease and dementia.

Alzheimer's disease is a type of dementia and, together with vascular dementia, makes up the vast majority of cases.

People with dementia can become apathetic or uninterested in their usual activities, or may have problems controlling their emotions.

They may also find social situations challenging and lose interest in socialising. 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).

Because people with dementia may lose the ability to remember events or fully understand their environment or situations, it can seem as if they're not telling the truth, or are wilfully ignoring problems.

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.

Why is it important to get a diagnosis?

Although there is no cure for dementia at present, if it's diagnosed in the early stages, there are ways you can slow it down and maintain mental function.

A 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.

The symptoms of dementia tend to worsen with time. In the much later stages of dementia, people will be able to do far less for themselves and may lose much of their ability to communicate.

How common is dementia?

According to the Alzheimer's Society there are around 850,000 people in the UK with dementia. One in 14 people over 65 will develop dementia, and the condition affects 1 in 6 people over 80.

The number of people with dementia is increasing because people are living longer. It is estimated that by 2025, the number of people with dementia in the UK will have increased to around 1 million.

Symptoms of dementia

Dementia is not a disease itself but rather a collection of symptoms that result from damage to the brain caused by different diseases, such as Alzheimer's. These symptoms vary according to the part of the brain that is damaged.

Common early symptoms of dementia

Different types of dementia can affect people differently, and everyone will experience symptoms in their own way.

However, there are some common early symptoms that may appear some time before a diagnosis of dementia. These include:

  • memory loss
  • difficulty concentrating
  • finding it hard to carry out familiar daily tasks, such as getting confused over the correct change when shopping
  • struggling to follow a conversation or find the right word
  • being confused about time and place
  • mood changes

These symptoms are often mild and may get worse only very gradually. It's often termed "mild cognitive impairment" (MCI) as the symptoms are not severe enough to be diagnosed as dementia.

You might not notice these symptoms if you have them, and family and friends may not notice or take them seriously for some time. In some people, these symptoms will remain the same and not worsen. But some people with MCI will go on to develop dementia.

Dementia is not a natural part of ageing. This is why it's important to talk to your GP sooner rather than later if you're at all worried about memory problems or other symptoms.

Symptoms specific to Alzheimer's disease

The most common cause of dementia is Alzheimer's disease. Common symptoms of Alzheimer's disease include:

  • memory problems – regularly forgetting recent events, names and faces
  • 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
  • becoming more withdrawn or anxious

Symptoms specific to vascular dementia

Vascular dementia is the second most common cause of dementia, after Alzheimer's. Some people have both vascular dementia and Alzheimer's disease, often called "mixed dementia".

Symptoms of vascular dementia are similar to Alzheimer's disease, although memory loss may not be as apparent in the early stages.

Symptoms can sometimes develop suddenly and quickly get worse, but they can also develop gradually over many months or years.

Specific symptoms can include:

  • stroke-like symptoms: including muscle weakness or temporary paralysis on one side of the body (these symptoms require urgent medical attention)
  • movement problems – difficulty walking or a change in the way a person walks
  • thinking problems – having difficulty with attention, planning and reasoning
  • mood changes – depression and a tendency to become more emotional

Read more about vascular dementia.

Symptoms specific to dementia with Lewy bodies

Dementia with Lewy bodies has many of the symptoms of Alzheimer's disease, and people with the condition typically also experience:

  • periods of being alert or drowsy, or fluctuating levels of confusion
  • visual hallucinations
  • becoming slower in their physical movements
  • repeated falls and fainting
  • sleep disturbances

Read more about dementia with Lewy bodies.

Symptoms specific to frontotemporal dementia

Although Alzheimer's disease is still the most common type of dementia in people under 65, a higher percentage of people in this age group may develop frontotemporal dementia than older people. Most cases are diagnosed in people aged 45-65.

Early symptoms of frontotemporal dementia may include:

  • personality changes – reduced sensitivity to others' feelings, making people seem cold and unfeeling
  • lack of social awareness – making inappropriate jokes or showing a lack of tact, though some people may become very withdrawn and apathetic
  • language problems – difficulty finding the right words or understanding them
  • becoming obsessive – such as developing fads for unusual foods, overeating and drinking

Read more about frontotemporal dementia.

Symptoms in the later stages of dementia

As dementia progresses, memory loss and difficulties with communication often become severe. In the later stages, the person is likely to neglect their own health, and require constant care and attention.

The most common symptoms of advanced dementia include:

  • Memory problems – people may not recognise close family and friends, or remember where they live or where they are.
  • Communication problems – some people may eventually lose the ability to speak altogether. Using non-verbal means of communication, such as facial expressions, touch and gestures, can help.
  • Mobility problems – many people become less able to move about unaided. Some may eventually become unable to walk and require a wheelchair or be confined to bed.
  • Behavioural problems – a significant number of people will develop what are known as "behavioural and psychological symptoms of dementia". These may include increased agitation, depressive symptoms, anxiety, wandering, aggression or sometimes hallucinations.
  • Bladder incontinence is common in the later stages of dementia, and some people will also experience bowel incontinence.
  • Appetite and weight loss problems are both common in advanced dementia. Many people have trouble eating or swallowing, and this can lead to choking, chest infections and other problems.

Causes of dementia

Dementia isn't a single disease. Dementia is a term used to describe the symptoms that occur when there's a decline in brain function.

Several different diseases can cause dementia. Many of these diseases are associated with an abnormal build-up of proteins in the brain.

This build-up causes nerve cells to function less well and ultimately die. As the nerve cells die, different areas of the brain shrink.

Causes of Alzheimer's disease

Alzheimer's disease is the most common type of dementia.

In the brain of someone with Alzheimer's disease, there are two different proteins called amyloid and tau.

Deposits of amyloid, called plaques, build up around brain cells. Deposits of tau form "tangles" within brain cells.

Researchers don't yet fully understand how amyloid and tau are involved in the loss of brain cells, but this is an area of active research.

As brain cells become affected in Alzheimer's, there's also a decrease in chemical messengers (called neurotransmitters) involved in sending messages, or signals, between brain cells.

Levels of one neurotransmitter, acetylcholine, are particularly low in the brains of people with Alzheimer's disease.

Medicines like donepezil increase levels of acetylcholine, and improve brain function and symptoms.

These treatments aren't a cure for Alzheimer's disease, but they do help improve symptoms.

The symptoms that people develop depend on the areas of the brain that have been damaged by the disease.

The hippocampus is often affected early on in Alzheimer's disease. This area of the brain is responsible for laying down new memories. That's why memory problems are one of the earliest symptoms in Alzheimer's.

Unusual forms of Alzheimer's disease can start with problems with vision or with language.

Causes of vascular dementia

Vascular dementia is caused by reduced blood flow to the brain.

Nerve cells in the brain need oxygen and nutrients from blood to survive. When the blood supply to the brain is reduced, the nerve cells function less well and eventually die.

Reduced blood flow can be caused by:

  • narrowing of the small blood vessels deep inside the brain – known as small vessel disease (subcortical vascular dementia); this is the main cause of vascular dementia and is more common in people who smoke, or have high blood pressure or diabetes
  • a stroke (where the blood supply to part of the brain is suddenly cut off, usually as a result of a blood clot) – called post-stroke dementia
  • lots of "mini strokes" that cause widespread damage to the brain – known as multi-infarct dementia

Not everyone who's had a stroke will go on to develop vascular dementia.

Mixed dementia

Because both vascular dementia and Alzheimer's disease are common – especially in older people – they may be present together.

This is often called mixed dementia because a mix of these two conditions is thought to be the cause of the dementia.

It can be difficult to be sure how much each cause is contributing to a person's problems.

Causes of dementia with Lewy bodies

Lewy bodies are tiny clumps of a protein called alpha-synuclein that can develop inside brain cells.

These clumps damage the way the cells work and communicate with each other, and the cells eventually die.

Dementia with Lewy bodies is closely related to Parkinson's disease and often has some of the same symptoms, including difficulty with movement and a higher risk of falls.

Causes of frontotemporal dementia

This is an important cause of dementia in younger people. It's most often diagnosed between the ages of 45 and 65.

It's caused by an abnormal clumping of proteins, including tau, in the frontal and temporal lobes at the front and sides of the brain.

The clumping of these proteins damages nerve cells in the frontal and temporal lobes, causing brain cells to die. This leads to shrinking of these areas of the brain.

Frontotemporal dementia is more likely to run in families and have a genetic link than other, more common causes of dementia.

Rarer causes of dementia

There are many rarer diseases and conditions that can lead to dementia, or dementia-like symptoms.

These conditions account for only 5% of dementia cases in the UK.

They include:

Mild cognitive impairment

Mild cognitive impairment (MCI) isn't a cause of dementia.

It refers to a condition in which someone has minor problems with cognition, or their memory and thinking, such as:

  • memory loss
  • difficulty concentrating
  • problems with planning and reasoning

These symptoms aren't severe enough to cause problems in everyday life, so aren't defined as dementia.

MCI can be caused by an underlying illness, such as depression, anxiety or thyroid problems.

If the underlying illness is treated or managed, symptoms of MCI often disappear and cause no further problems.

But in some cases, people with MCI are at increased risk of going on to develop dementia, which is usually caused by Alzheimer's disease.

How to get a dementia diagnosis

If you're worried about your memory or think you may have dementia, it's a good idea to see your doctor.

If you're worried about someone else's memory problems, encourage them to make an appointment and perhaps suggest that you go along with them.

Getting a diagnosis gives you and your family the best chance to prepare and plan for the future.

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 doctor about dementia

Your doctor will ask about your symptoms and other aspects of your health, and will give you a physical examination.

If possible, someone who knows you well should be with you as they can help describe any changes or problems they've noticed.

They may also be able to help you remember what was said at the appointment if this is difficult for you.

Memory problems don't necessarily mean you have dementia. These problems can also be caused by other factors, such as:

  • depression and anxiety
  • delirium (confusion caused by medical conditions, such as infections)
  • thyroid problems
  • side effects of medication

To help rule out other causes of memory problems, your doctor will organise blood tests.

You'll also be asked to do a memory or cognitive test to measure any problems with your memory or ability to think clearly.

Your doctor may also ask about whether you're finding it difficult to manage everyday activities, such as:

  • personal care (bathing and dressing)
  • cooking and shopping
  • paying bills

Referral to a dementia specialist

Dementia can be difficult to diagnose, especially if your symptoms are mild.

If your doctor is unsure about your diagnosis, they'll refer you to a specialist, such as:

  • a psychiatrist with experience of treating dementia (usually called an old age psychiatrist)
  • an elderly care physician (sometimes called a geriatrician)
  • a neurologist (an expert in treating conditions that affect the brain and nervous system)

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. Taking the opportunity to go back can be very helpful.

The specialist may want to organise further tests, which may include brain scans such as a CT scan, or preferably an MRI scan.

A further, more detailed memory test is also likely to be carried out.

If they're still not certain about the diagnosis, you may need to have further, more complex, tests. But most cases of dementia can be diagnosed with the above assessments.

If the diagnosis is dementia

Once you've had the necessary tests (or sometimes before the tests), your doctor should ask if you want 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's not clear, what the plan to investigate further will involve; sometimes, despite investigations, a diagnosis may not be clear, in which case the doctors will reassess you again after a period of time
  • details about symptoms and how the illness might develop
  • appropriate treatments 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
  • advice about continuing to drive or your employment if this applies to you
  • where you can find financial and legal advice

You should also be given written information about dementia.

Ongoing dementia assessment

Once you've been given a diagnosis, your doctor should arrange to see you from time to time to see how you're getting on.

The memory service where you were assessed may also continue to see you in the early stages.

The doctor and specialist may also jointly prescribe medications that may be helpful in treating some of the symptoms of dementia. But 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, including if you will need to assign a specific person to take care of your future welfare or financial needs.

What are the treatments for dementia?

There is at present no cure for dementia. But there are medicines and other treatments that can help with dementia symptoms.

Medicines to treat dementia

Most of the medications available are used to treat Alzheimer's disease as this is the most common form of dementia. They can help to temporarily reduce symptoms.

The main medicines are:

Acetylcholinesterase inhibitors

These medicines prevent an enzyme from breaking down a substance called acetylcholine in the brain, which helps nerve cells communicate with each other.

Donepezil (also known as Aricept), rivastigmine (Exelon) and galantamine (Reminyl) are used to treat the symptoms of mild to moderate Alzheimer's disease. Donepezil is also used to treat more severe Alzheimer's disease.

There is evidence that these medicines can also help treat dementia with Lewy bodies and Parkinson's disease dementia, as well as people who have a mixed dementia diagnosis of Alzheimer's disease with vascular dementia.

There is little difference between these medicines in their effectiveness. However, rivastigmine may be preferred if hallucinations are one of the main symptoms.

Side effects can include nausea and loss of appetite. These usually get better after two weeks of taking the medication.

Memantine

This medicine (also known as Namenda) is given to people with moderate or severe Alzheimer's disease, dementia with Lewy bodies and those with a combination of Alzheimer's disease and vascular dementia. It's suitable for those who can't take or are unable to tolerate acetylcholinesterase inhibitors. It works by blocking the effects of an excessive amount of a chemical in the brain called glutamate.

Side effects can include headaches, dizziness and constipation, but these are usually only temporary.

There are some conditions, such as heart problems, that can affect symptoms of dementia, particularly vascular dementia. It is important that these are diagnosed and treated.

These conditions include:

Medicines to treat challenging behaviour

In the later stages of dementia, a significant number of people will develop what is known as "behavioural and psychological symptoms of dementia (BPSD)". The symptoms of BPSD can include:

  • increased agitation
  • anxiety
  • wandering
  • aggression
  • delusions
  • hallucinations

These changes in behaviour can be very distressing, both for the person with dementia and for the person caring for them. However, there are coping strategies that can help.

If coping strategies don't work, antipsychotic medicines such as risperidone or haloperidol may be prescribed for those showing persistent aggression or extreme distress.

These are the only medicines licensed for people with moderate to severe Alzheimer's disease (risperidone and haloperidol) and vascular dementia (just haloperidol) where there is a risk of harm to themselves or others.

Risperidone should be used at the lowest dose and for the shortest time possible (up to 6 weeks) as it has serious side effects. Haloperidol can be used only if other treatments have not helped.

The decision to prescribe a medicine should be taken by a consultant psychiatrist.

Antidepressants may sometimes be given if depression is suspected as an underlying cause of anxiety.

Alternative remedies

Some people with dementia and their carers use complementary remedies, such as gingko biloba, curcumin or coconut oil. However, there is not enough evidence to say whether such remedies are effective.

It's best to be wary of any products that claim to benefit people with dementia. If you're thinking of taking such a product or supplement, it's important to consult a doctor first. Some remedies interact with prescribed medicines and they should never be taken as a substitute.

Treatments that don't involve medicines

Medicines for dementia symptoms are important, but are only one part of the care for a person with dementia. Other treatments, activities and support – for the carer, too – are just as important in helping people to live well with dementia.

Cognitive stimulation therapy

Cognitive stimulation therapy (CST) involves taking part in group activities and exercises designed to improve:

  • memory
  • problem-solving skills
  • language ability

Evidence suggests that CST benefits people with mild to moderate dementia.

Cognitive rehabilitation

This technique involves working with a trained professional, such as an occupational therapist, and a relative or friend to achieve a personal goal, such as learning to use a mobile phone or other everyday tasks.

Cognitive rehabilitation works by getting you to use the parts of your brain that are working to help the parts that are not. In the early stages of dementia, it can help you cope better with the condition.

Reminiscence and life story work

Reminiscence work involves talking about things and events from your past. It usually involves using props such as photos, favourite possessions or music.

Life story work involves a compilation of photos, notes and keepsakes from your childhood to the present day. It can be either a physical book or a digital version.

These approaches are sometimes combined. Evidence shows that they can improve mood and wellbeing. They also help you and those around you to focus on your skills and achievements rather than on your dementia.

Activities for dementia

Having dementia doesn't mean you have to stop doing the things you enjoy.

There are all sorts of activities you can do – physical, mental, social and creative – that help you to live well with dementia and improve wellbeing.

If you care for someone who has dementia, a shared activity can make both of you happier and able to enjoy quality time together.

You can continue with the activities you already enjoy, though they may take longer than they used to. Or try new activities, such as the suggestions on this page.

Stay socially active

Keeping in touch with people is good for your confidence and mental wellbeing. As well as meeting up with friends and family, try these activities:

  • dance, tai chi, yoga, swimming or joining a walking group will help keep you active as well as sociable – look out for local dementia-friendly swimming, gym and walking sessions
  • arts-based activities – drawing/painting classes, drama groups and book clubs can all help you stay involved
  • reminiscence work – share your life experiences and stories from the past with photos, objects, video and music clips, either as a book or on a tablet or other digital device
  • find a local memory or dementia café – meet other people with dementia and their carers in an informal drop-in setting to share advice, tips and support

Tablets and smartphones

These digital devices can be very useful for people with dementia.

From online games, puzzles and dedicated dementia apps, to Skype and You Tube, they provide a way to stay engaged with others and enjoy a range of activities.

Out and about

Many communities are working to become dementia friendly. This means that organisations and venues may have specialist events and activities for people with dementia, such as:

  • dementia-friendly cinema screenings and streaming of live theatre productions
  • sensory gardens – a garden or plot designed to provide different sensory experiences, including scented plants, sculptures, textured touch pads and water features
  • woodland walks

Speak to your doctor for advice on local organisations that can support both you and the person caring for you.

Activities for the later stages of dementia

It's often assumed that people in the later stages of dementia are unable to engage in activities, but this isn't true.

Activities will often need to be simplified and are more likely to focus on the senses:

  • sight
  • hearing
  • touch
  • taste
  • smell

Playing music, objects to touch and interact with, and hand massage can all help people with dementia in the later stages.

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