Dementia is the name for a group of diseases that affect the normal working of the brain. The changes in the brain slowly lead to memory loss and confusion, and affect people’s personality and behaviour. They begin to lose the ability to carry out normal, everyday activities for themselves.

The Alzheimer's Society estimates that over 700,000 people in the UK have dementia, and that 18,500 of them are under 65.

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Dementia is the general term for a gradual decline in memory, personal activities and social skills. The main symptoms include:

• disturbed behaviour (being disorganised, acting inappropriately, distracted, restless, antisocial)

• not understanding that they are acting differently

• impaired thinking (slow, simple thinking, incoherent, rigid)

• simple or poor speech

• low mood

• poor "cognitive function" (i.e. thinking abilities such as forgetful, poor attention, not sure what day or time it is)

• poor memory

Sometimes a dementia can be caused by e.g. vitamin deficiency, infections or medicine side effects. If this happens, then it is best to treat the cause. Otherwise, the decline can't be reversed.

There are several types of dementia. The most well known is Alzheimer’s disease, a form of dementia with clear changes in the structure of the brain. It usually shows as:

• steady deterioration

• forgetfulness

• lack of spontaneity

• being disorientation

• being depressed

• less self-care

• poor sleep (waking disorientated and puzzled)

• intellectual impairment.

Lewy Body Dementia is a variation of Alzheimer’s disease. It is more common in men. The main symptoms include an earlier age of onset, visual hallucinations (seeing things that aren't there), and some symptoms of Parkinsonism e.g. stiffness. People with Lewy Body Dementia may be very sensitive to antipsychotics, which may lead to lots of side effects e.g. sudden muscle stiffness, confusion and getting worse. There are other dementias e.g. multi-infarct dementia.

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Because everyone is unique, everyone's symptoms are different. So, it's not always clear what the right diagnosis is. Here is a list of some other possible causes for the symptoms of dementia. This is not meant to be a textbook list, just some ideas. Some of these can be very rare indeed. Sometimes it doesn't matter anyway as the symptoms need to be treated anyway, no matter what causes them.

• Different types of dementia - Alzheimer's, multi-infarct, Pick's Disease, Lewy Body dementia, vascular dementia (caused by strokes blocking blood vessels in the brain), CJD (Creutzfeldt-Jakob disease, possibly related to so-called "Mad Cow disease)

• Depression - which can also affects memory and concentration

• Prescribed medicine-induced e.g. alcohol, anticonvulsants, benzodiazepines, some antidepressants (e.g. tricyclic antidepressants), some antipsychotics (e.g. phenothiazines), some heart drugs, statins (for high cholesterol)

• Excess alcohol use (alcohol dependence) or withdrawal, causing Korsakoff's syndrome (memory loss caused by lack of Vitamin B1 [thiamine] partly from poor diet)

• Intoxication by industrial solvents

• Heavy metal poisoning (such as iron, manganese, aluminum, mercury, beryllium)

• Infections (Lyme's disease, AIDS, other viruses, fungi, parasites)

• Constipation or bladder infections (UTI)

• Dementia due to other illnesses e.g. Huntington's Disease, Parkinson's disease, syphilis, AIDS, kidney failure

• Psychosis or schizophrenia

• Bipolar mania or hypomania

• Seasonal Affective Disorder

• Delirium - which can have a sudden onset and have many causes

Just to confuse matters further, sometimes people have more than one illness (sometimes called "co-morbidity"). For example, if 1 in 10 people get depressed and 1 in 10 people get anxiety, then just by chance 1 in 10 of the depressed people get anxiety as well. However, if you're depressed, you're more likely to be anxious. Co-morbidity means what else the person is more likely to have at the same time. This can make diagnosis more difficult.

• Depression - nearly 1 in 2 (40%) people with dementia get depressed, although it doesn't make much difference to the outcome

• Delusions - only about 1 in 4 (30%) people with dementia do not get delusions

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Basically, anyone can get dementia. However, there are some "risk factors" that make it more likely that someone will get the symptoms of dementia. This is not a complete list but some of the main ones include:

• Strong family history of dementia
• Having had major depression in the past
• Having had high blood pressure, high cholesterol in mid-life (even a bit higher), heart disease, diabetes, cigarette smoking, lack of exercise, being overweight in midlife. Controlling blood pressure (e.g. taking antihypertensive medicines), reducing cholesterol, managing diabetes, stopping smoking and taking exercise will reduce the risk
• Having a medicine with a strong "anticholinergic" effect can reduce the amount of the chemical messenger acetylcholine in the brain (see below). This can add a little to the risk of dementia or make it worse (Fox and Maidment, 2011). These medicines include:
  • Tricyclics (e.g. dosulepin, doxepin, imipramine, trimipramine), anticholinergics (e.g. procyclidine, orphenadrine), some antihistamines (e.g. chlorpheniramine, clemastine, diphenhydramine, hydroxyzine, promethazine, meclizine), some treatments for incontinence (e.g. flavoxate, oxybutinin, tolterodine), dicyclomine, hyoscine, paroxetine, propantheline, phenothiazines (e.g. chlorpromazine, perphenazine) and clozapine.
• Age:  
  • Over 65, about 1 in 10 people (5-15%) will have some sort of dementia, over half (50-75%) of which is Alzheimer's disease
  • Over 75, about 2 in 10 people (15-20%) will have some sort of dementia
  • Over 85, about 3 to 5 in 10 people (25-50%) will have some sort of dementia
• Alcohol drinking seems to have no effect. 

One of the chemical messengers in the brain is called acetylcholine. This is the messenger that controls memory (both remembering things from the past and remembering new things). In dementias the symptoms are caused by a deterioration in the brain, and the main chemical messenger that gets short in the brain is acetylcholine, which reduces memory. Too much glutamate (a chemical messenger that excites the brain) can also cause brain damage by over-exciting parts of it. The main medicines for medicine either boost acetylcholine or reduce glutamate.

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The list here includes most of the main options but does not say what works and doesn't. Many may be used in combination. Most herbal and alternative therapies have not really been tested in the same rigorous way that medicines have.

Our aim is to try to help people who are taking medication (or should be) get the right medicine, dose and take it regularly for as long as is right. Any medicines should usually be part of the overall treatment, although some people are quite happy just to stick with drugs or talking treatments. If your medicines are right, then everything else can fall into place. If the medicines are wrong, then they may make the symptoms worse and self-help will not be as useful.

Self-help

• Keeping the brain as active as possible ("use it or lose it" as they say)
• Taking any medicines regularly and reliably
• Eating healthily and taking exercise  (“exercise to energise”) or being active. There is evidence that physical activity and exercise slightly improves thinking and memory over several years. The exercise can stimulate the growth of new brain cells and help the brain protect itself.  
• Moderate social drinking can be beneficial (up to two drinks per day for men and 1 drink per day for women). Heavy drinking (more than 3 to 5 drinks per day) has a higher risk of dementia and damaging thinking processes. This comes in 2011 from an analysis of 143 studies, although the authors said "We don't recommend that non-drinkers start drinking, but moderate drinking - if it is truly moderate - can be beneficial."

Help from others

Some "psychosocial interventions" such as talking therapies can be very helpful to both patients and their families and carers. This can include the later stages of dementia. Some of these are included below:

• Social support
• Family support
• OT, physiotherapy, general care and support
• Alternative therapies such as aromatherapy, hypnosis, hypnotherapy, homeopathy (treating like with like) or acupuncture can be used with (but not instead of) conventional treatments. The evidence for these treatments is not very good. All of these can be used in conjunction with other therapies. If they work then that is fine and we wouldn’t knock them. Gingko Biloba may be useful. Click here for a balanced review of complementary and alternative therapies from the Royal College of Psychiatrists (e.g. Ginkgo, Sage, vitamins, other herbals etc, and some useful links).
• ‘Person Centred Care' means trying to understand the whole person to get the right care e.g. seeing the person as a person (not just someone with dementia), what they think, caring in the right place, and allowing the person to live as good life as possible. This would include comfort, being part of a group, being kept busy and feeling an individual. This can include:
• Life Story Work uses the person's life history to help them today e.g. their family, childhood, working life, major life events, interests and later life.
• Cognitive Stimulation Therapy (CST) is something NICE says can help people with mild to moderate dementia. It usually has 14 sessions and aims to find things to stimulate the person's mind. Please ask our older people's mental health service for further information.
• "Assistive Technology" uses devices and technology to help the person survive e.g. they can range from diaries and date clocks through to electronic paging devices. For more information see AT Dementia, or contact our local Alzheimer's society.
• Reminiscence therapy looks at old photographs or videos or items from their personal life or social history to help keep the brain active.

Medication

• Medicines include anticholinesterases, memantine, antidepressants and low-dose antipsychotics

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If you are prescribed a medicine, then there may be many reasons why that one has been chosen. These might include:

• side effects (which ones are important to you)
• local policies or agreements (such as what your GP surgery uses or agreements in your area)
• national policies (e.g. NICE, SIGN - see last question)
• familiarity (it may be better for prescribers to use medicines they are familiar with)
• relative costs for similar medicines (if two medicines are very similar, why waste money on the more expensive one?)
• personal preference (either yours or your prescriber)
• how bad your symptoms are
• any medicine you might have done well with in the past (as it's more likely to work again)

The main medicine treatment options in UK are listed below. They are divided into "Main medicines" and "Others".

For convenience, the "Main medicines” are those medicines that are officially "approved" to treat the condition or symptoms (www.bnf.org/bnf/) and which are listed in the British National Formulary (BNF). To be listed in the BNF there needs to be good evidence that the medicine works and that the manufacturers have applied for a license (a long and costly exercise). "Others" are those medicines where there is some evidence that they help, but either not enough for a license or that no license has been applied for. These should usually only be used where other standard treatments have failed.

Main medicines

BNF Listed:

Anticholinesterases (which all boost acetylcholine, the main chemical messenger in the brain involved with memory) such as:

• Donepezil (Aricept ®), available as ordinary tablets and melt-in-the-mouth tablets

• Galantamine (Reminyl ® and Reminyl XL ®), available as twice a day tablets, once a day capsules and a syrup

• Rivastigmine (Exelon ®), available as twice a day capsules, a syrup, and once a day sticky patch.

NMDA-receptor antagonists

• Memantine (Ebixa ®), available as tablets and a syrup. It reduces the amount of toxic glutamate in the brain

Antipsychotics

• Risperidone, which can be used in the short-term (e.g. 6 weeks) for behavioural symptoms such as wandering, anxiety and aggression

Others:

• Antipsychotics (such as olanzapine, quetiapine, sulpiride, amisulpride, phenothiazines) - may be useful in the short-term (e.g. 6-8 weeks) for behavioural symptoms such as wandering, anxiety and aggression. There has been some concern about an increase in the number of older people who die when taking antipsychotics. This may be because the person becomes less mobile and may not drink enough. This can cause dehydration, so make sure an older person takes enough fluid, especially in the first couple of weeks of taking an antipsychotic

• Ginkgo Biloba - a herbal preparation that may be effective

• Antidepressants (for depressive symptoms), including the SSRIs and mirtazapine 

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Download a handy summary chart (PDF format) comparing the main medicines for dementia e.g. names, how they work, doses, how long they take to work, some side effects, how long to take and how to stop.

Alternatively you can read the chart now in the window below. Use the controls at the bottom of the window to navigate through the chart and magnify the information. The 'Download', 'Print' and 'Fullscreen' links at the top of the window are particularly helpful.

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You should think carefully about taking any chemical that affects your body, including your brain. So think carefully before your next cup of tea or coffee!

None of the medicines available at the moment seem to really slow down the dementia getting steadily worse but can help delay it and make the best of the person as they are. Talking therapies don't really help much either, but games, activites and other things can help keep the mind as active and used as possible.

For an appeal for everyone to have a sense of balance about medicines and talking therapies please click here for our take on it.

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This is likely to be life-long. The medicines don’t cure anything but they make the most of what is there.

If the antipsychotics are being used to help control behaviour, they should be stopped every couple of months. This helps check that the medicines are not over-sedating the person or leading to falls.

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Before going onto another medicine, it is worth trying to get the best out of the first one. There is a risk that switching medicines too quickly means you don’t get the best out of one medicine. Then perhaps you start to search for the “magic bullet”, expecting the drugs to work quicker and having less patience. There are of course no “magic bullets”. Most symptoms have started to happen over a few weeks, months or years, not a few days, so it is perhaps unfair to expect them to go over a few days. The symptoms are more likely to go gradually over weeks or months. The anticholinesterases can sometimes lead to improvement for a while (up to a couple of years) or just delay the symptoms getting worse.

If side effects are the main problem with a medicine, try to cope with these by e.g. changing times, splitting the dose, manage side effects etc.

The best thing to do is set out your aims of success of any treatment in advance and be realistic.

• With the anticholinesterases (donepezil, galantamine, rivastigmine) you may need to build up the dose over a few weeks or months to get the right dose (see the handy charts). These medicines can gradually improve, stabilise or at least reduce the rate of decline (but don’t halt it) so it is always very difficult to know how long to give them before deciding they’re not working. Often the only way is stop and see what happens. If the medicine is working, the person will then decline to how they would have been without the medicine within 4-6 weeks.

• Memantine – again this may help slow down deterioration, but should have some effects in a few weeks

• Antipsychotics (such as olanzapine, risperidone, quetiapine, sulpiride, amisulpride, phenothiazines) are usually fairly quick, i.e. a few days or week or so, but may take some time to get the right dose and balance between effects and sedation/other side effects.

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There are no easy answers to this and it is a very individual choice. Generally one medicine should always be the aim but combinations (often called “polypharmacy”) sometimes help. It is rarely of any use to combine drugs with similar ways of working. Below are some of the combinations that are used with the reasons. This is not a complete list but you might want to talk to your prescriber about any combinations not on this list you may be prescribed.

All the anticholinesterases have similar ways of working but slightly different side effects. So there is no point in taking more than one. Memantine may be useful with anticholinesterases, although not all areas allow GPs to prescribe this drug. Although once common, use of low-dose antipsychotics such as risperidone is now less common but still very useful. Low dose quetiapine e.g. up to 100mg a day is useful sometimes in combination with other medicines.

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If you want to read up a bit more on the best treatments, there are many guidelines that you can look at. Probably the most important of these for England and Wales are those produced by NICE (the National Institute for Health and Clinical Excellence). NICE is an independent body that is asked to produce advice about preventing and treating illnesses and promoting good health. Scotland has SIGN and Northern Ireland has its own similar body.

Each set of NICE Guidelines is written by an independent and carefully chosen group of specialists and experts (including service users and carers). They carefully review the available evidence and base their guidelines on this.

There are two main types of NICE guidance:

• "Technology appraisal". These look at an "intervention" (i.e. a medicine, a surgical operation etc) and decide if they think the evidence is good enough to make this intervention a standard and/or if it is cost-effective compared to other treatments

• "Clinical guidelines", which look at a particular condition (e.g. hypertension, lung cancer, depression, Parkinson's disease, bipolar disorder etc) and give guidelines covering medicines, services, support etc.

The guidelines are well intentioned and give generally sound guidance (although these are sometimes controversial). They are, however, only "guidelines", so are not rigid instructions.

When NICE issues a guideline, it produces a full set, and all of these are available on the NICE website:

• Full guideline (very long and detailed, often several hundred pages, for anorak healthcare professionals only)

• Official guideline (usually 10-30 pages, the summary version for healthcare professionals)

• Quick reference guideline for healthcare professionals (usually only a couple of pages)

• User-friendly summary for service users, carers and the general public

• From 2010 NICE has started producing some Quality Standards to go with the guidelines  

These should then be reviewed, usually about 4-5 years or sooner if more information becomes available.

As a general rule, you should start with treatments recommended by NICE as these are the ones with most evidence that they work. However, if these do not help you, it may be useful to try other treatments.

• NICE - click here for the dementia guidelines, and click here for the 2010 Dementia Quality Standards

• Click here for the latest NICE Technology Appraisal for the anticholinesterases (donepezil, galantamine, rivastigmine) and memantine. This was issued on 23rd March 2011 and says that
  "The review and re-appraisal of donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease has resulted in a change in the guidance. Specifically:
  • donepezil, galantamine and rivastigmine are now recommended as options for managing mild as well as moderate Alzheimer’s disease, and
  • memantine is now recommended as an option for managing moderate Alzheimer’s disease for people who cannot take AChE inhibitors, and as an option for managing severe Alzheimer’s disease."
  This is a change because before memantine was not approved, but now it is considered an option. English Trusts had to implement these guidelines by the beginning of July 2011.

• Scottish Intercollegiate Guidelines Network (SIGN) guidelines for the Management of people with dementia (February 2006)

• Northern Ireland

There are plenty of other guidelines and so-called "consensus statements" (where a group of experts and specialists pool their ideas, based on their own experiences as well as what the published papers say, rather than just what the published studies say). These will have been produced for healthcare professionals by such bodies as BAP (British Association for Psychopharmacology).

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The resources below provide more information  about dementia and Alzheimer's disease. Please note that this is not an exhaustive list. We welcome your feedback on resources that you think should be listed here.

The Mental Health Foundation have recently launched a range of information materials produced by Dementia Choices, covering Dementia and Self Directed Support, for sufferers, carers and professionals.

The NHS has produced "Alzheimer's in the news - A Behind the Headlines Special Report" in August 2011 to review the dozens of media reports about Alzheimers, spot some of the more important stories and examine some stories that were "wide of the mark".

Mental Health Ireland has a great links page on this extensive site

Your Mental Health Ireland, with a young person’s page as well

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