Living With Dementia - Western Health and Social Care Trust

Living With Dementia

Memory Assessment Clinic 1

Memory Assessment Clinic • July 2012

Living With DementiaMemory Assessment Clinic • July 2012






AcknowledgementThe Western Health and Social Care Trust would like to take this opportunity to thank Alzheimer’s Society for the reproduction of some of their text within this book.

For details of Alzheimer’s Society services in your area, visit alzheimers.org.uk/localinfo

For information about a wide range of dementia-related topics, visit alzheimers.org.uk/factsheets





CONTENTSMemory Clinic Contact Information

What is Dementia Factsheet

What is Alzheimer’s Disease?

What is Vascular Dementia?

What is Dementia with Lewy Bodies (DLB)?

What is fronto-temporal dementia?

What if I have Dementia Factsheet?

After a Diagnosis Factsheet

How Health and Social Care Professional Can Help

Drug Treatments for Alzheimer’s Disease Factsheet

Counselling – How Can it Help?

Maintaining Everyday Skills Factsheet

Coping With Memory Loss Factsheet

Driving and Dementia Factsheet

Financial and Legal Affairs Factsheet

Alzheimer’s Society local Branch Information

Advocacy Leaflet

Recommended Reading

List of Alzheimer’s Society Factsheets

Guide to the Complaints Procedure

Comments





Your Local Memory Service Contact InformationIncluded you will find contact details for memory clinics within the districts of Derry, Omagh and Enniskillen. Please contact your local memory clinic if you require any assistance or advice following your diagnosis.

Derry Team

Oak Villa Monday - Friday 9am - 5pmGransha ParkClooney Road Outside office hours or in Derry the case of an emergencyBT47 6WJ contact the Social Worker on call on 028 7134 5171 or yourT: 028 7186 4384 General Practitioner

Omagh Team

Holly Villa Monday - Friday 9am - 5pmTyrone & Fermanagh HospitalDonaghanie Road Outside office hours or inOmagh the case of an emergencyCo Tyrone contact Western Urgent Care CP Service, Omagh T: 028 8283 5933 on 028 8283 3186

Enniskillen Team

Coleshill Monday - Friday 9am - 5pmColeshill HouseEnniskillen Outside office hours or in Co Fermanagh the case of an emergency contact Urgent Care CPT: 028 6634 4000 Service on 087 0606 2288





Information Sheet 400

First updated: July 2008Last reviewed: July 2008

Reviewed by Dr Nicholas MacInnes, research Fellow,

Alzheimer’s Scoiety

www.alzheimers.org.uk

© 2010 Alzheimer’s Society

What is Dementia?If you, or a friend or relative, have been diagnosed with dementia, you may be feeling anxious or confused. You may not know what dementia is. This factsheet should help answer some of your questions.

The term ‘dementia’ is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. These include Alzheimer’s disease and sometimes as a result of a stroke.

Dementia is progressive, which means the symptoms will gradually get worse. How fast dementia progresses will depend on the individual. Each person is unique and will experience dementia in their own way.

Symptoms of dementia include:

• Loss of memory: for example, forgetting the way home from the shops, or being unable to remember names and places, or what happened earlier the same day.

• Mood changes: particularly as parts of the brain that control emotion are affected by disease. People with dementia may also feel sad, frightened or angry about what is happening to them.

• Communication problems: a decline in the ability to talk, read and write.

In the later stages of dementia, the person affected will have problems carrying out everyday tasks, and will become increasingly dependent on other people.

What causes dementia?There are several diseases and conditions that cause dementia. These include:

Alzheimer’s disease The most common cause of dementia. During the course of the disease the chemistry and structure of the brain changes, leading to the death of brain cells (see Factsheet 401, What is Alzheimer’s disease?).

Vascular disease The brain relies on a network of vessels to bring it oxygen-bearing blood. If the oxygen supply to the brain fails, brain cells are likely to die and this can cause the symptoms of vascular dementia. These symptoms can occur either suddenly, following a stroke, or over time through a series of small strokes (see Factsheet 402, What is vascular dementia?).



Dementia with Lewy bodies This form of dementia gets its name from tiny spherical structures that develop inside nerve cells. Their presence in the brain leads to the degeneration of brain tissue. Memory, concentration and language skills are affected. This form of dementia shares some characteristics with Parkinson’s disease (see Factsheet 403, What is dementia with Lewy bodies?).

Fronto-temporal dementia (including Pick’s disease) In fronto-temporal dementia, damage is usually focused in the front part of the brain. At first, personality and behaviour are more affected than memory (see Factsheet 404, What is fronto-temporal dementia, including Pick’s disease?).

Rarer causes of dementiaThere are many other rarer diseases that cause dementia, including progressive supranuclear palsy, Korsakoff’s syndrome, Binswanger’s disease, HIV and AIDS, and Creutzfeldt-Jakob disease (CJD) (see Factsheets 438, What is Korsakoff’s syndrome? , 446, What is HIV-related cognitive impairment? and 427, What is Crutzfeldt-Jakob disease?). People with multiple sclerosis, motor neurone disease, Parkinson’s disease and Huntington’s disease may also be more likely to develop dementia.

Mild cognitive impairmentSome individuals may have difficulty remembering to do things, but a doctor may feel that the symptoms are not severe enough to warrant the diagnosis of Alzheimer’s disease or another type of dementia. When this condition occurs, some doctors will use the term ‘mild cognitive impairment’ (MCI). Recent research has shown that a small number of individuals with MCI have an increased risk of progressing to Alzheimer’s disease. However, the conversion rate from MCI to Alzheimer’s is small (10-15 per cent), so a diagnosis of MCI does not always mean that the person will go on to develop Alzheimer’s.

Who gets dementia?• There are about 700,000 people in the UK with dementia.

• Dementia mainly affects older people. However, it can affect younger people: there are 15,000 people in the UK under the age of 65 who have dementia.

• Dementia can affect men and women.

• Scientists are investigating the genetic background to dementia. It does appear that in a few rare cases the diseases that cause dementia can be inherited. Some people with a particular genetic make-up have a higher risk than others of developing dementia.



Can dementia be cured?Most forms of dementia cannot be cured, although research is continuing into developing drugs, vaccines and treatments. Drugs have been developed that can temporarily alleviate some of the symptoms of some types of dementia. These drugs are known as acetylcholinesterase inhibitors.

The National Institute for Health and Clinical Excellence (NICE) revised guidance on acetylcholinesterase inhibitors to treat some types of dementia, issued in 2006, recommends that people in the moderate stages of some types of dementia should be given treatment with one of these drugs.

Alzheimer’s diseasePeople with Alzheimer’s disease may be offered an acetylcholinesterase inhibitor if their non-cognitive symptoms are very distressing and other treatments have not worked or are not suitable.

Dementia with Lewy bodiesPeople with dementia with Lewy bodies may be offered an acetylcholinesterase inhibitor if their non-cognitive symptoms are very distressing.

Vascular dementiaPeople with vascular dementia should not be offered an acetylcholinesterase inhibitor, except as part of a clinical trial.

The three acetylcholinesterase inhibitor drugs are:

• Aricept (donepezil hydrochloride)

• Exelon (rivastigmine)

• Reminyl (galantamine).

The latest (2011) guidance from the National Institute for Health and ClinicalExcellence (NICE) recommends that donepezil, rivastigmine and galantamineare available as part of NHS care for people with mild-to-moderate Alzheimer’sdisease. There are also now several studies − including work supported byAlzheimer’s Society − which suggest that cholinesterase inhibitors may also helppeople with more severe Alzheimer’s disease. However, these drugs are notlicensed in the UK for the treatment of severe Alzheimer’s disease.

A further drug Ebixa (memantine) is licensed for the treatment of moderate to



severe Alzheimer’s disease. The 2011 NICE guidance recommends use of memantine as part of NHS care for severe Alzheimer’s disease and for patients with moderate disease who cannot take the cholinesterase inhibitor drugs.

How can I tell if I have dementia?Many people fear they have dementia, particularly if they think that their memory is getting worse. Becoming forgetful does not necessarily mean that you have dementia: memory loss can be an effect of ageing, and it can also be a sign of stress or depression. In rare cases, dementia-like symptoms can be caused by vitamin deficiencies and/or a brain tumour. If you are worried about yourself, or someone close to you, it is worth discussing your concerns with your GP.

Diagnosing dementiaIt is very important to get a proper diagnosis. A diagnosis will help the doctor rule out any illnesses that might have similar symptoms to dementia, including depression. Having a diagnosis may also mean it is possible to be prescribed drugs for Alzheimer’s disease. Whether you are someone with dementia or a carer, a diagnosis can help you prepare and plan for the future.

Dementia can be diagnosed by a doctor, either a GP or a specialist. The specialist may be a geriatrician (a doctor specialising in the care of older people), a neurologist (someone who concentrates on diseases of the nervous system) or a psychiatrist (a mental health specialist). The doctor may carry out a number of tests. These are designed to test the person’s memory and their ability to perform daily tasks.

Can dementia be prevented?At present, we are not sure what causes most of the diseases that lead to dementia. This means it is difficult to be sure what we can do to prevent dementia itself. However, the evidence seems to indicate that a healthy diet and lifestyle may help protect against dementia.

In particular, not smoking, exercising regularly, avoiding fatty foods and keeping mentally active into old age may help to reduce the risk of developing vascular dementia and Alzheimer’s disease.

Your local Alzheimer’s Society branch will always be willing to talk to you and offer advice and information to support your needs.

For more information, Dementia Catalogue, our specialist dementia information resource, is available on the website at alzheimers.org.uk/dementiacatalogue



Information Sheet 401

Last updated: July 2010Last reviewed: August 2008

Reviewed by Dr Nicholas MacInnes, research Fellow,

Alzheimer’s Scoiety



What is Alzheimer’s Disease?Alzheimer’s disease is the most common cause of dementia, affecting around 465,000 people in the UK. The term ‘dementia’ is used to describe the symptoms that occur when the brain is affected by specific diseases and conditions. This factsheet outlines the symptoms and risk factors for Alzheimer’s disease, and describes what treatments are currently available.

Alzheimer’s disease, first described by the German neurologist Alois Alzheimer, is a physical disease affecting the brain. During the course of the disease, ‘plaques’ and ‘tangles’ develop in the structure of the brain, leading to the death of brain cells. People with Alzheimer’s also have a shortage of some important chemicals in their brains. These chemicals are involved with the transmission of messages within the brain.

Alzheimer’s is a progressive disease, which means that gradually, over time, more parts of the brain are damaged. As this happens, the symptoms become more severe.

SymptomsPeople in the early stages of Alzheimer’s disease may experience lapses of memory and have problems finding the right words. As the disease progresses, they may:

• become confused, and frequently forget the names of people, places, appointments and recent events

• experience mood swings. They may feel sad or angry. They may feel scared and frustrated by their increasing memory loss

• become more withdrawn, due either to a loss of confidence or to communication problems.

As the disease progresses, people with Alzheimer’s will need more support from those who care for them. Eventually, they will need help with all their daily activities.

While there are some common symptoms of Alzheimer’s disease, it is important to remember that everyone is unique. No two people are likely to experience Alzheimer’s disease in the same way.



Mild cognitive impairmentRecently, some doctors have begun to use the term ‘mild cognitive impairment’ (MCI) when an individual has difficulty remembering things or thinking clearly but the symptoms are not severe enough to warrant the diagnosis of Alzheimer’s disease. Recent research has shown that a small number of individuals with MCI have an increased risk of progressing to Alzheimer’s disease. However, the conversion rate from MCI to Alzheimer’s is small (about 10-15 per cent), and consequently a diagnosis of MCI does not always mean that the person will go on to develop Alzheimer’s.

What causes Alzheimer’s disease?So far, no one single factor has been identified as a cause for Alzheimer’s disease. It is likely that a combination of factors, including age, genetic inheritance, environmental factors, diet and overall general health, are responsible. In some people, the disease may develop silently for many years before symptoms appear and the onset of clinical disease may require a trigger.

AgeAge is the greatest risk factor for dementia. Dementia affects one in 14 people over the age of 65 and one in six over the age of 80. However, Alzheimer’s is not restricted to elderly people: in the UK, there are over 16,000 people under the age of 65 with dementia, although this figure is likely to be an underestimate.

Genetic inheritanceMany people fear that they may inherit Alzheimer’s disease, and scientists are currently investigating the genetic background to Alzheimer’s.

We do know that there are a few families where there is a very clear inheritance of the disease from one generation to the next. This is often in families where the disease appears relatively early in life.

In the vast majority of cases, however, the effect of inheritance seems to be small. If a parent or other relative has Alzheimer’s disease, your own chances of developing the disease are only a little higher than if there were no cases of Alzheimer’s in the immediate family.

However, carriers of the ApoE4 gene variant have a much higher chance of developing Alzheimer’s disease. For more information see Factsheet 405, Genetics and dementia .



Environmental factorsThe environmental factors that may contribute to the onset of Alzheimer’s disease have yet to be identified. A few years ago, there were concerns that exposure to aluminium might cause Alzheimer’s disease. However, these fears have largely been discounted.

Other factorsBecause of the difference in their chromosomal make-up, people with Down’s syndrome who live into their 50s and 60s may develop Alzheimer’s disease.

People who have had severe head or whiplash injuries also appear to be at increased risk of developing dementia. Boxers who receive continual blows to the head are at risk too.

Research has also shown that people who smoke, and those who have high blood pressure or high cholesterol levels, increase their risk of developing Alzheimer’s.

Getting a diagnosisIf you are concerned about your own health, or the health of someone close to you, it is important to seek help from a GP. An early diagnosis will:

• help you plan for the future

• enable the person with dementia to benefit from the treatments that are now available

• help you identify sources of advice and support.

There is no straightforward test for Alzheimer’s disease or for any other cause of dementia. A diagnosis is usually made by excluding other causes which present similar symptoms. The GP will need to rule out conditions such as infections, vitamin deficiency, thyroid problems, brain tumours, depression and the side-effects of drugs.

SpecialistsYour GP may ask a specialist for help in carrying out a diagnosis. The specialist may be an old-age psychiatrist, a neurologist, a physician in geriatric medicine or a general psychiatrist.

Who you see depends on the age of the person being examined, how physically able they are, and how well services are developed in the local area.



TestsThe person being tested will usually be given a blood test and a full physical examination to rule out or identify any other medical problems. The person’s memory will be assessed, initially with questions about recent events and past memories. Their memory and thinking skills may also be assessed in detail by a psychologist.

A brain scan may be carried out to give some clues about the changes taking place in the person’s brain. There are a number of different types of scan, including computerised tomography (CT) and magnetic resonance imaging (MRI).

TreatmentThere is currently no cure for Alzheimer’s disease. However, some drug treatments are available that can ameliorate the symptoms or slow down the disease progression in some people.

People with Alzheimer’s have been shown to have a shortage of the chemical acetylcholine in their brains. The drugs Aricept, Exelon and Reminyl (trade names for the drugs donepezil hydrochloride, rivastigmine and galantamine, respectively) work by maintaining existing supplies of acetylcholine. These drugs are available to people in the moderate stages of dementia, and at your GP’s discretion, for people in the early stages. Please refer to the National Institute for Clinical Excellence (NICE) for guidance (see ‘Useful organisations’ at the end of this factsheet). Side-effects may include diarrhoea, nausea, insomnia, fatigue and loss of appetite.

A drug called Ebixa (trade name for the drug memantine) was launched in the UK in 2002. This drug works in a different way to the other three - it prevents the excess entry of calcium ions into brain cells. Excess calcium in the brain cells damages them and prevents them from receiving messages from other brain cells. Ebixa is the only drug that is suitable for use in people in the middle to later stages of dementia. Side-effects may include hallucinations, confusion, dizziness, headaches and tiredness.

These drugs are not a cure, but they may stabilise some of the symptoms of Alzheimer’s disease for a limited period of time.

Some evidence suggests that dietary supplements of antioxidants, such as vitamins D and C, can reduce the prevalence of Alzheimer’s. However, more recent studies have been unable to repeat this finding and further work is necessary to clarify the role that dietary supplements have in Alzheimer’s disease.



Caring for someone with dementiaMuch can be done at a practical level to ensure that people with Alzheimer’s live as independently as possible for as long as possible. Alzheimer’s Society produces information on a wide range of topics, including Factsheets 523, Carers: looking after yourself ; 500, Communicating ; 524, Understanding and respecting the person with dementia ; and 525, Unusual behaviour. See also the details for Carers UK in ‘Useful organisations’, below.

For details of Alzheimer’s Society services in your area, visit alzheimers.org.uk/localinfo. For information about a wide range of dementia-related topics, visit alzheimers.org.uk/factsheets

Useful organisations

Alzheimer’s SocietyDevon House58 St Katharine’s WayLondon E1W 1JX

T 020 7423 3500

E [email protected] alzheimers.org.uk

Carers UK20 Great Dover StreetLondon SE1 4LX

T 0808 808 7777 (free carers’ line, Wednesday and Thursday 10am-12pm and 2pm-4pm)

E [email protected] http://www.carersuk.org/

Provides information and advice to carers about their rights, and how to access support.



National Institute of Clinical Excellence (NICE)MidCity Place71 High HolbornLondonWC1V 6NA

T 0845 003 7780

E [email protected] http://www.nice.org.uk/

Provides national guidance on promoting good health and preventing and treating ill health. It produces guidance on public health, health technologies, and on appropriate treatment and care of people with specific diseases and conditions within the NHS. For the most up-to-date information on Alzheimer’s treatments, go to the website.



Factsheet 402

Last reviewed: Dec 2011Next review date: Dec 2013

Reviewed by Professor Antony Bayer, Head of

Geriatric Medicine, Cardiff University School of Medicine

and University Hospital Llandough, Cardiff and

Professor of Primary Care for Older People, University

College London



What is Vascular Dementia?Vascular dementia is the second most common form of dementia after Alzheimer’s disease. It is caused by problems in the supply of blood to the brain. This factsheet will help you to understand vascular dementia by explaining the causes, symptoms and treatments available.

The term ‘dementia’ is used to describe a set of symptoms that occur when the brain is damaged by specific diseases. These diseases include Alzheimer’s disease and vascular dementia. Someone with dementia may experience loss of memory, mood changes, and problems with language, reasoning and decision making. Being told that you or a loved one has vascular dementia can be very difficult and you may experience a range of different emotions as time goes on. There is support available if you need it. Alzheimer’s Society’s National Dementia Helpline can provide information, support, guidance and signposting to other organisations. Details are at the end of this factsheet.

Symptoms of vascular dementiaVascular dementia affects different people in different ways and the speed of the progression varies from person to person. Typically, the symptoms of vascular dementia begin suddenly, for example after a stroke. Vascular dementia often follows a ‘stepped’ progression, with symptoms remaining at a constant level for a time and then suddenly deteriorating. Some symptoms may be similar to those of other types of dementia, such as Alzheimer’s disease. However, people with vascular dementia may particularly experience:

• problems with speed of thinking, concentration and communication

• depression and anxiety accompanying the dementia

• symptoms of stroke, such as physical weakness or paralysis

• memory problems (although this may not be the first symptom)

• seizures

• periods of severe (acute) confusion.



Other symptoms associated with vascular dementia may include:

• visual mistakes and misperceptions (for example, seeing a rug as a pond)

• changes in behaviour (such as restlessness)

• difficulties with walking and unsteadiness

• hallucinations (seeing or hearing things that aren’t there) and delusions (believing things that are not true)

• problems with continence

• psychological symptoms such as becoming more obsessive.

It is important to note that some of these symptoms may not always be direct consequences of the disease. Other factors can also play a part. For example, visual misperceptions may be the result of poor lighting or the particular way a home has been decorated, and some behavioural changes may be a consequence of care needs not being fully met.

How does vascular dementia develop?To be healthy and function properly, brain cells need a good supply of blood. Blood is delivered through a network of blood vessels called the vascular system. If the vascular system within the brain becomes damaged and blood cannot reach the brain cells, the cells will eventually die. This can lead to the onset of vascular dementia.

A number of conditions can cause or increase damage to the vascular system. These include high blood pressure, heart problems, high cholesterol and diabetes. This means it is important that these conditions are identified and treated at the earliest opportunity. Effective treatment of these conditions may significantly delay or stop the development of vascular dementia.

Types of vascular dementiaThere are different types of vascular dementia. The difference between these types depends on what has caused the damage in the brain, and which part of the brain has been damaged.

Stroke-related dementia A stroke occurs when the blood supply to part of the brain is cut off. This interruption in blood supply causes permanent damage



to the brain. A stroke is usually the result of a burst blood vessel (known as haemorrhagic stroke) or a blood clot (known as an ischemic stroke). The symptoms that a person experiences as a result of a stroke depend on which area of the brain has been damaged. For example, if the area affected is responsible for movement of an arm or leg, paralysis might occur. If it is responsible for speech, the person might have problems communicating. Equally, damage to particular areas in the brain can cause the symptoms of dementia.The most common type of vascular dementia is called multi-infarct dementia, which is caused by a series of small strokes. These can be so tiny that the person might not notice any symptoms, or the symptoms may only be temporary.When vascular dementia develops after an obvious stroke, it is sometimes called post-stroke dementia (or ‘single-infarct dementia’).

Sub-cortical vascular dementia (small vessel disease or Binswanger’s disease) Sub-cortical vascular dementia is sometimes referred to as small vessel disease. There is also a specific form of sub-cortical vascular dementia called Binswanger’s disease. Sub-cortical vascular dementia is caused by damage to the tiny blood vessels that lie deep within the brain. Symptoms may include difficulties walking, clumsiness, lack of facial expression and speech difficulties. Loss of bladder control early on in the disease is also common. These symptoms, however, are not always present and may come and go. Some people may experience sub-cortical vascular dementia as well as stroke.

Mixed dementia (vascular dementia and Alzheimer’s disease) About 10 per cent of people with dementia have a type known as mixed dementia. A diagnosis of mixed dementia means that Alzheimer’s disease, as well as stroke or small vessel disease, may have caused damage to the brain. The symptoms of mixed dementia may be similar to either Alzheimer’s disease or vascular dementia, or may be a combination of the two.

Factors that can increase the risk of vascular dementiaMany of the factors that increase the risk of vascular dementia are the same as those that increase the risk of cardiovascular disease (for example, smoking). This is because the cardiovascular system (made up of the heart and blood vessels) is responsible for delivering blood to the brain.

Factors that can increase a person’s risk of developing vascular dementia include:

• a medical history of stroke, high blood pressure, high cholesterol, diabetes (particularly type II), heart problems or sleep apnoea (where breathing stops for a few seconds or minutes during sleep)



• a lack of physical activity, drinking more than recommended levels of alcohol, smoking, eating a fatty diet, or leaving conditions such as high blood pressure or diabetes untreated

• a family history of stroke or cardiovascular disease

• an Indian, Bangladeshi, Pakistani or Sri Lankan ethnic background - differences in vascular risk factors (such as heart disease) in these communities may contribute to the increased risk

• an African-Caribbean ethnic background - more research is needed to know why African-Caribbean people have an increased risk of vascular dementia.

Diagnosing vascular dementiaIf you, or someone close to you, are worried about dementia, the first step is to visit the GP as soon as possible. The earlier a diagnosis is made, the better the chance of treatment to slow the progression of the disease. The GP will need to find out about the person’s symptoms, medical history, current health and lifestyle.Unless another cause can be found for the symptoms, the doctor should refer the person to a specialist for cognitive tests to assess their attention, planning and thinking speed. The specialist may carry out brain scans to help make a diagnosis. Investigations will also aim to identify conditions that may be contributing to the progression of vascular dementia. These conditions include high blood pressure, heart problems, diabetes and high cholesterol.

It is often helpful if a close friend or family member accompanies the person to the first GP appointment. They may be able to describe subtle changes that the person themselves has not noticed.

If the person has any family history of vascular dementia, or related conditions (such as heart problems), they should mention this to the doctor.

Always consult a doctor if you experience any sudden symptoms, such as slurred speech, weakness on one side of the body, or blurred vision - even if they are only temporary. These symptoms may be caused by temporary interruptions in the blood supply within the brain. If left untreated, they can lead to permanent damage.



Treatment The speed that vascular dementia progresses varies from person to person. Although the brain damage that causes vascular dementia cannot be reversed, it may be possible to slow the progression of the disease in a number of ways.

These include:

• taking medication to treat any underlying conditions, such as stroke, high blood pressure, high cholesterol, diabetes or heart problems

• adopting a healthier lifestyle by stopping smoking, taking regular exercise, eating healthily, and drinking alcohol only in moderation

• receiving rehabilitative support, such as physiotherapy, occupational therapy and speech therapy, to help the person maximise their opportunities to regain their lost functions.

The National Institute for Health and Clinical Excellence (NICE) has issued guidelines on drug treatments for Alzheimer’s disease (including cholinesterase inhibitors and memantine), but has not recommended these same drugs for treating vascular dementia. These drugs may, however, be prescribed to treat mixed dementia, particularly when Alzheimer’s disease is predominant.



Further readingTo learn more about vascular dementia, see our publication An introduction to vascular dementia. The booklet is priced at £2 and can be ordered from Xcalibre on 01628 529240 or [email protected]

Alternatively, you can buy it from our online shop at alzheimers.org.uk/shop





Factsheet 403

First updated: Sept 2010Last reviewed: Sept 2010

Written and reviewed by Professor Ian McKeith,

Professor of Old Age Psychiatry, Institute for

Ageing and Health,Newcastle University.



What is Dementia With Lewy Bodies (DLB)?Dementia with Lewy bodies (DLB) is a form of dementia that shares characteristics with both Alzheimer’s and Parkinson’s diseases. It accounts for around ten per cent of all cases of dementia in older people and tends to be under-diagnosed. Dementia with Lewy bodies is sometimes referred to by other names, including Lewy body dementia, Lewy body variant of Alzheimer’s disease, diffuse Lewy body disease, cortical Lewy body disease and senile dementia of Lewy body type. All these terms refer to the same disorder. This factsheet outlines the symptoms of DLB, how it is diagnosed and how it is treated.Dementia with Lewy bodies appears to affect men and women equally. As with all forms of dementia, it is more prevalent in people over the age of 65. However, in certain rare cases people under 65 may develop DLB.

What are Lewy bodies?Lewy bodies, named after the doctor who first identified them in 1912, are tiny, spherical protein deposits found in nerve cells. Their presence in the brain disrupts the brain’s normal functioning, interrupting the action of important chemical messengers, including acetylcholine and dopamine. Researchers have yet to understand fully why Lewy bodies occur in the brain and how they cause damage.

Lewy bodies are also found in the brains of people with Parkinson’s disease, a progressive neurological disease that affects movement. Many people who are initially diagnosed with Parkinson’s disease later go on to develop a dementia that closely resembles DLB.

What are the symptoms of dementia with Lewy bodies? Dementia with Lewy bodies is a progressive disease. This means that over time the symptoms will become worse. In general, DLB progresses at about the same rate as Alzheimer’s disease, typically over several years.

• A person with DLB will usually have some of the symptoms of Alzheimer’s and Parkinson’s diseases.

• They may experience problems with attention and alertness, often have spatial disorientation and experience difficulty with ‘executive function’, which includes difficulty in planning ahead and co-ordinating mental activities. Although memory is often affected, it is typically less so than in Alzheimer’s disease.

• They may also develop the symptoms of Parkinson’s disease, including slowness, muscle stiffness, trembling of the limbs, a tendency to shuffle when walking, loss of facial expression, and changes in the strength and tone of the voice.



There are also symptoms that are particular to dementia with Lewy bodies. In addition to the symptoms above, a person with DLB may:

• experience detailed and convincing visual hallucinations (seeing things that are not there), often of people or animals

• find that their abilities fluctuate daily, or even hourly

• fall asleep very easily by day, and have restless, disturbed nights with confusion, nightmares and hallucinations

• faint, fall, or have ‘funny turns’.

How is dementia with Lewy bodies diagnosed?Dementia with Lewy bodies can be difficult to diagnose, and this should usually be done by a specialist. People with DLB are often mistakenly diagnosed as having Alzheimer’s disease or vascular dementia instead. The diagnosis of DLB is made on the basis of the symptoms − particularly persistent visual hallucinations, fluctuation and the presence of the stiffness and trembling of Parkinson’s. New brain-imaging tests can also help.

It is always important to get an accurate diagnosis of dementia, but a proper diagnosis is particularly important in cases of suspected DLB since people with DLB have been shown to react badly to certain forms of medication (see ‘DLB and neuroleptics’, below).

How is dementia with Lewy bodies treated?At present, there is no cure for dementia with Lewy bodies. Symptoms such as hallucinations may diminish if challenged, but it can be unhelpful to try to convince the person that there is nothing there. It is sometimes better to try to provide reassurance and alternative distractions. For more information, see Factsheet 520, Hallucinations in people with dementia.

Recent research suggests that the cholinesterase inhibitor drugs used to treat Alzheimer’s disease may also be useful in treating DLB, although they are not yet licensed for this use. However, recent guidelines from the National Institute of Clinical Excellence (NICE) do suggest that these drugs should be considered for ‘people with DLB who have non-cognitive symptoms causing significant distress to the individual, or leading to behaviour that challenges’.



A recent study also found the drug memantine (Ebixa) to improve general function in DLB although further studies are required to confirm this.

People who are experiencing symptoms such as rigidity and stiffness due to parkinsonism may benefit from anti-Parkinson’s disease drugs, although these can make hallucinations and confusion worse. Physiotherapy and mobility aids may also help alleviate these problems.

Dementia with Lewy bodies and neuroleptics Neuroleptics are strong tranquillisers usually given to people with severe mental health problems. In the past, they have frequently been prescribed to people with dementia. However, it is always preferable to find ways of dealing with a person’s distress and disturbance that do not involve medication. Under no circumstances should neuroleptics be prescribed as a substitute for good quality care.

For people with dementia with Lewy bodies, neuroleptics may be particularly dangerous. This class of drugs induce Parkinson-like side-effects, including rigidity, immobility, and an inability to perform tasks or to communicate. Studies have shown that they may even cause sudden death in people with DLB. If a person with DLB must be prescribed a neuroleptic, this should be done with the utmost care, under constant supervision, and should be monitored regularly.

The names of many of the major neuroleptics available are listed below. New drugs are appearing from time to time. The generic name is given first, followed by some of the common proprietary (drug company) names for that particular compound: aripiprazole (Abilify), chlorpromazine (Largactil), clopenthixol (Clopixol), haloperidol (Haldol, Serenace), olanzapine (Zyprexa), promazine quetiapine (Seroquel), risperidone (Risperdal), sulpiride (Dolmatil, Sulparex, Sulpitil), trifluoperazine (Stelazine).

When caring for someone with dementia with Lewy bodies, it is important to be as flexible as possible, bearing in mind that the symptoms of DLB will fluctuate.







What is fronto-temporal dementia (including Pick’s disease)?

This factsheet provides some general information about one of the rarer forms of dementia: fronto-temporal dementia. It explains who is likely to be affected, what symptoms they may experience, how it is diagnosed, and what can be done to help.

What is fronto-temporal dementia?The term ‘fronto-temporal dementia’ covers a range of conditions, including Pick’s disease, frontal lobe degeneration, and dementia associated with motor neurone disease. All are caused by damage to the frontal lobe and/or the temporal parts of the brain. These areas are responsible for our behaviour, emotional responses and language skills.

Who does it affect?Fronto-temporal dementia is a relatively uncommon form of dementia. As a result, many people (including health professionals) may not have heard of it. Overall, it occurs less frequently than other conditions such as Alzheimer’s disease. However, it is a significant cause in younger people - specifically those under the age of 65 - and is the second or third most common cause of dementia in this age group.

What are the symptoms?Damage to the frontal and temporal lobe areas of the brain causes a variety of different symptoms. Each person will experience the condition in his or her own individual way, but there are some symptoms commonly experienced by people with the condition.

Personality and behaviour changeTypically, during the initial stages of fronto-temporal dementia, the person’s memory is still intact but their personality and behaviour changes. People with fronto-temporal dementia may:

• lack insight, and lose the ability to empathise with others. This can make them appear selfish and unfeeling

• become extrovert when they were previously introverted, or withdrawn when they were previously outgoing

• behave inappropriately - for example, making tactless comments, joking at the ‘wrong’ moments, or being rude

• lose their inhibitions - for example, exhibiting sexual behaviour in public

Factsheet 404

Last updated: Sept 2010Updated: June 2012

Last reviewed: Sept 2010

Reviewed by ProfessorNick Fox, Professor of

Neurology and MRC Senior Clinical Fellow at the Institute

of Neurology, University College London in the

Dementia Research Centre.



• become aggressive

• be easily distracted

• develop routines - for example, compulsive rituals.

It is important to recognise that these symptoms have a physical cause, and cannot usually be controlled or contained by the person. (See Factsheet 525, Unusual behaviour.)

Language difficultiesThe person with fronto-temporal dementia may experience language difficulties, including:

• problems finding the right words

• a lack of spontaneous conversation

• circumlocution, using many words to describe something simple

• a reduction in or lack of speech.

Changes in eating habitsThe person may overeat and/or develop a liking for sweet foods. (See Factsheet 511, Eating and drinking.)

Later stagesThe rate of progression of fronto-temporal dementia varies enormously, ranging from less than two years to over ten years.

In the later stages, the damage to the brain is usually more generalised, and symptoms usually appear to be similar to those of Alzheimer’s disease. People affected may no longer recognise friends and family, and may need nursing care.

What causes it?There is a family history in about one third to one half of all cases of fronto-temporal dementia. In these families, the course of the disease usually has a specific pattern across the generations. Some of these inherited forms have been linked to specific genes - the most important discovered so far are two genes called tau and progranulin. In a number of families the responsible gene defect has not been identified.



So far, the causes of non-inherited fronto-temporal dementia are unknown.

How is it diagnosed?Fronto-temporal dementia can be misdiagnosed as Alzheimer’s disease or mistaken for a mood or other psychiatric problem. A specialist may be able to make a diagnosis of fronto-temporal dementia by questioning the person affected, taking a detailed history of their symptoms and organising some tests. They may also ask for information from family, friends and carers, to gain a wider picture of the person’s behaviour.

There are no blood tests that can diagnose fronto-temporal dementia but blood tests can help exclude other causes of problems.

Cognitive tests (often with a neuropsychologist) can assess which brain functions are particularly affected.

Computerised axial tomography (CT) and magnetic resonance imaging (MRI) scans may also be used to determine the extent and location of damage to the brain. Scans that look at the activity of the brain such as positron emission tomography (PET) and single photon emission computerised tomography (SPECT) may identify areas which are not functioning normally. However, a definite diagnosis may only be possible after death, when changes in the cells of the brain can be directly observed at post mortem.

Is treatment possible?As yet, there is no cure for fronto-temporal dementia, and the progression of the condition cannot be slowed. Drugs that are designed for the treatment of Alzheimer’s disease, such as Aricept (trade name for donepezil hydrochloride), Exelon (rivastigmine) and Reminyl (galantamine), may occasionally make symptoms worse and increase aggression.

However, much can be done to ease symptoms. Knowing more about the disease, and understanding that it is the cause of behaviour changes, can help the person - and those around them - to cope with the disease.

People who are close to someone with fronto-temporal dementia need to try to develop coping strategies, such as avoiding confrontation and working round obsessions, rather than trying to change the person’s behaviour.

Speech therapists may be helpful for language problems.



The Pick’s Disease Support Group is another source of information and support, see ‘Useful organisations’ for details.


For information about a wide range of dementia-related topics, visit alzheimers.org.uk/factsheets Further readingCummings JL (2003) The neuropsychiatry of Alzheimer’s disease and related dementias, London: Martin Dunitz.

Harvey R, Fox N and Rossor M (1999) Dementia handbook, London: Martin Dunitz.

Kertesz A and Munoz DG eds (1998) Pick’s disease and Pick complex, Chichester: Wiley-Liss.


Alzheimer’s SocietyDevon House 58 St Katharine’s Way London E1W 1LB T 020 7423 3500 0845 300 0336 (helpline open 8.30am-6.30pm weekdays)

E [email protected] (general information) [email protected] (helpline) W alzheimers.org.uk

The UK’s leading care and research charity for people with dementia and those who care for them. The helpline provides information, support, guidance and referrals to other appropriate organisations.



Frontotemporal Dementia Support GroupMiss Penelope Roques3 Fairfield ParkLyme Regis DT7 3DS

T 01297445488

E [email protected] W www.ftdsg.org

Provides information and support for people affected by fronto-temporal dementia (formerly the Pick’s Disease Support Group).





What if I have dementia? (Amended) Information sheet 518

A diagnosis of dementia often comes as a shock. Even if you have been half expecting it, this will be a worrying and upsetting time. It will also be hard for those close to you. You will all need a great deal of reassurance and support. However, there is much that you can do in the early stages that will help make life easier and more enjoyable, both now and in the future.

You will want to remain as independent as you can for as long as possible. Although you will need an increasing amount of help as the dementia progresses, it is important to make sure that other people don’t take over your life when you can still manage it. Make sure, too, that you are consulted on all matters that concern you. You should have the opportunity to make your own choices for as long as you can. It is essential that you feel able to retain your confidence, dignity and self-esteem.

Talking things overYou will need to discuss plans for the future with those who are closest to you and with certain professionals.

• If your family and friends do not already know about your diagnosis, try to tell them as soon as possible. At first, they may not want to believe you if they are very upset by the news. Try to discuss matters in a calm way.

• It will help if you can talk about your own wishes for the future, but try not to ask people to make promises now that may be difficult to keep in the future.

• It may help if you can talk about your feelings to someone you trust outside the family.

Putting your affairs in orderNow is the time to make sure that any important documents are in order and can easily be found. These include details of your mortgage or tenancy agreement, insurance policies, bank statements or building society books. Go through all the details with a member of your family, partner or trusted friend.

• Sort out any recent bills, guarantees and regular payments. It might be a good idea to arrange to pay your regular household bills by direct debit, if you are not already doing so. Details of how to do this are given on each bill.

• Look again at your will and make sure that it expresses your wishes, or consult a solicitor about making a new one.

Factsheet 518

Last updated: March 2010Last reviewed: Oct 2008

Reviewed by Cathy Baldwin, Dementia Learning and

Development Adviser, Alzheimer’s Society.



WorkIf you are still at work and are finding it stressful, there may be an opportunity to switch to a less demanding job or to reduce your hours.

• Seek expert advice on your pension rights if an occupational pension is due to you. It may be possible to negotiate a lump sum.

• Before leaving work, check on benefits that you or your family may be entitled to (see Factsheet 413, Benefits). If necessary, your personnel department or manager should be able to help you make enquiries.

ServicesLook at what services may be available to you. Even if you don’t need them now, they may be useful in the future. By using the services that you are entitled to you can ensure that those closest to you don’t have to take on all the responsibility for helping you.

• Contact your local social services department for details of services that they can arrange. Find out about a community care assessment. Social services departments are listed in the phone book under the name of the county council or metropolitan authority.

• Find out what services can be arranged through your GP or consultant.

• Find out what kinds of services and support are provided by local voluntary organisations, such as the Alzheimer’s Society. Social services or your local Citizens Advice Bureau can advise about this. (See ‘Useful organisations’.)

HealthIt is important to take good care of your health. Having dementia should not mean that you feel ill so always check with your doctor if you feel unwell. This is important because any illness can make you feel more confused and forgetful.

• Try to eat balanced meals (see Factsheet 511, Eating ).

• Try to take regular exercise (see Factsheet 522, Staying healthy).

• Enjoy the odd alcoholic drink if you wish, but avoid too much alcohol as it will make you more disoriented.



• If you are on medication, ask your GP to check whether it is essential, as it can sometimes increase confusion.

• Poor vision and poor hearing can make you more confused. It is important to have regular eye and hearing checks.

• Painful teeth, gums or dentures can also make life more difficult. Make sure that you have regular dental check-ups (see Factsheet 448, Dental care and dementia).

DrivingIf you drive, you may have to give up doing so either now or in the near future. Anyone who drives and has a medical condition that may affect their ability to drive, such as dementia, must inform the Driver and Vehicle Licensing Authority (DVLNI) who will assess every case individually. It is a criminal offence not to inform the DVLNI of your diagnosis. Check with your insurance company to make sure you are still covered following your diagnosis. (See Factsheet 439, Driving and dementia).

MemoryIf you find it hard to remember things, you may find it useful to follow these tips:

• Don’t be afraid to ask questions.

• Don’t be afraid to say that you have not understood.

• Don’t be afraid to say that you have forgotten what has been said. Remember, it is not your fault if you can’t remember as well as you used to.

Alzheimer’s Society produces free helpcards that help to explain your condition to anyone you might encounter in daily life. (See ‘Further reading’.)

Look for practical ways to aid your memory - for example:

• Place helpful telephone numbers by the phone where you can see them.

• Put labels on cupboards or drawers to remind you where things are.

• Write reminders to yourself to lock the door at night, or put out the rubbish on a certain day, for example.



• Put things you use all the time, such as your keys or glasses, in an obvious place such as a large bowl in the sitting room.

Managing your routineYou may find it helpful to maintain your previous routine as much as possible:

• As your dementia develops, you may find it increasingly reassuring to do things at the same time each day or each week.

• Nevertheless, try to keep on making the occasional one-off visit or trip, to keep life interesting and enjoyable.

• Keep up things you like doing for as long as possible, if you find this difficult, try to take things at a slower pace.

Enjoying lifeSome of your previous interests may seem too stressful or demanding. But there will be many activities that will still give you satisfaction.

• Try to find things that you still enjoy doing such as listening to music, knitting, playing a game or exercising or talking to a friend.

• Caring for a pet can be very satisfying and reassuring. Taking a dog for a walk is a good way of getting regular exercise.

• Conversation between large groups of people can be hard to follow, so you may prefer friends or family to visit one or two at a time.

• Try to concentrate on what you can still do, rather than worrying about what you can’t.

• Consider starting a life history book. Use a simple scrapbook or photo album to record details of your past and present life that will be helpful for anyone who may be supporting you. This is something your family and friends can help you with, and it is a great opportunity to share your history, memories and thoughts with those close to you. (See Factsheet 505, Keeping active and staying involved).




For information about a wide range of dementia-related topics, visitalzheimers.org.uk/factsheets

Further readingFor more information on living with dementia, the following booklets are available for free to people with dementia.

1505, What your diagnosis means for you

1507, Talking to children about your illness

The following may also be helpful:

1540, Memory handbook

1532, Helpcards

All of these are available to order from Xcalibre on 01753 535 751 or [email protected]


Foyle Office Alzheimer’s SocietySeven Oaks FoldSeven OaksCrescent LinkLondonderryBT47 6AL

Tel: 028 71348887Email: [email protected]

Strabane OfficeAlzheimer’s SocietyOrchard Road Industrial EstateOrchard RoadStrabaneBT82 9FR

Tel: 07715800031Email: [email protected]



Omagh OfficeAlzheimers SocietyDoctor’s ResidenceHospital RoadOmaghBT79 0AP

Tel: 028 82240826Tel: 028 82250103

Email: [email protected]: [email protected]

Fermanagh OfficeAlzheimer’s SocietyCommunity Services BuildingColeshill House, 2 Coleshill RoadEnniskillenCo FermanaghBT74 7HG

Tel: 028 6634 4073

Email: [email protected]


Citizens Advice Bureau (CAB)Various locations

W http://www.citizensadvice.org.uk/

Your local CAB can provide information and advice in confidence or point you in the right direction. To find your nearest CAB call the regional office on There are also a number of local CABs and no of independent advice agencies. To find out where your local CAB, call regional office on: 90 231120 or look on the citizens advice website (above). Opening times vary.



After a diagnosis

Once you, or someone you are close to, receive a diagnosis of dementia, it is important to consider what to do next. This factsheet sets out all the key issues that you need to consider at this stage to make it easier for you, and those around you, to manage.

When someone is diagnosed with dementia, they should be encouraged to remain as independent as possible, and to continue to enjoy their usual activities and occupations. However, there is advice and support available to help prepare for later stages − and now is a good time to take advantage of it. Planning ahead also allows the person to begin to make arrangements for the future, while they have capacity, if they wish to do so. This can help allay some fears about future care, and gives them time to put their financial affairs in order.

Services and supportAccessing services and support at the right time can make a great difference, both to the person with dementia and to their family and friends.

A person with dementia will need an increasing amount of support as the condition progresses. Their local authority has a duty to carry out a community care assessment, which will assess the person’s needs and decide which services could be arranged to help meet them. To arrange an assessment, call the local authority social services department. The number is in the phone book. (For more details, see Factsheet 418, Community care assessment.)

Services arranged by local authorities are known as ‘community care services’. They vary from area to area, but may include:

• home care services

• equipment and adaptations

• day care services

• short breaks (respite) in a care home or a person’s own home

• residential care.

The financial situation of the person with dementia will be taken into account, and they may be asked to contribute towards the cost of services.

Information sheet 471



Local authorities also provide services for carers, who are entitled to a local authority assessment of their needs regarding the care they provide. This applies whether or not the person with dementia is also being assessed.

Some services, such as community nursing, are arranged through the health service. Ask a GP or hospital consultant for details.

Voluntary organisations provide services such as information, helplines, support groups, lunch clubs and home care schemes. Ask social services or your local Alzheimer’s Society branch, Citizens Advice Bureau or Age Concern group for details (see ‘Useful organisations’ for contact details).

Financial and legal affairsThe person with dementia needs to arrange their financial and legal affairs while they are still able to do so.

Get advice from a solicitor when completing legal documents. Check that documents are completed correctly and are legally valid. The Alzheimer’s Society can provide a list of solicitors with experience of helping people with dementia.

Make sure that all important papers are in order, and can be easily found. These might include bank and building society statements, mortgage or rent documents, insurance policies, a will, tax and pension details, bills and guarantees.

Consider setting up direct debits or standing orders for regular bills, so that no one has to remember to pay them.

BenefitsIt is important to check that the person with dementia (and their carer, if appropriate) claims all the benefits to which they are entitled. In particular, you will need to check:

• whether the person with dementia is eligible for disability living allowance or attendance allowance

• whether the carer, if there is one, is eligible for carer’s allowance.

Other benefits (depending on circumstances) include income support or minimum income guarantee, incapacity benefit, housing benefit and council tax relief.



Factsheet 413, Benefits, gives details about benefits and how to claim them. Alternatively, check with:

• the Department for Work and Pensions (previously the Benefits Agency)

• the Benefit Enquiry Line

• your local Citizens Advice Bureau or other local advice agency.

(For contact details, see ‘Useful organisations’.)

Making a willA will ensures that when a person dies, their money and possessions go to people of their choosing. A person with dementia can still make or change a will if they can show that they understand what they are doing and what the effects of it will be. Their solicitor will make a decision about this, sometimes after taking medical advice. For more details see Factsheet 467, Financial and legal tips.

Setting up a trustIf the person with dementia has investments, property or savings, they can set up a trust to ensure that these assets are managed in their chosen way. To do this, the person must be able to convey their wishes clearly, and should consult a solicitor. For more details, see Factsheet 467, as above.

Health

Seeing the GPIf someone has dementia, they should always see their GP if they feel unwell or if there are any concerns about their health. This is because even minor complaints can make a difference to their well-being and ability to cope. Many conditions, such as infected leg ulcers, constipation or chest infections, can cause additional confusion and distress that usually diminish once treated.

They should also see the GP if there are any sudden and inexplicable changes in their behaviour. Depression is very common in early-stage dementia, and it is important to tell the GP if this is suspected. If the condition persists, there is a range of treatments that the GP could suggest. See Factsheet 444, Depression.The GP can also refer people with dementia to other health professionals, such as community nurses and specialists. For more details see Factsheet 425, How the GP can help.



Non-essential medicationIf the person with dementia is already on medication, they should check with their GP whether it is essential. Some medication has side-effects that can add to existing confusion. The same applies for over-the-counter drugs.

Drugs for dementiaAt present, there are no treatments that can reverse the progress of dementia once it has developed. However, there are some that may alleviate some of the symptoms of Alzheimer’s disease, for a limited period of time − although they don’t work for everyone. These drugs are known as acetylcholinesterase inhibitors.

The latest NICE guidance on drug treatments for Alzheimer’s disease recommends that people in the mild-to-moderate stages of the disease should be given treatment with donepezil (Aricept), galantamine (Reminyl) or rivastigmine (Exelon), including individuals with both Alzheimer’s disease and learning disabilities.

This differs from the previous (2006) NICE guidance, which indicated these drugs could be prescribed only to people in the moderate stage of Alzheimer’s disease.

The 2011 NICE guidance further recommends that memantine (Ebixa) should be prescribed as part of NHS care for patients with severe Alzheimer’s disease, or for those with moderate disease who cannot take the cholinesterase inhibitor drugs. This differs from the previous NICE guidance, which stated that memantine should not be prescribed as part of NHS care, but emphasised further studies as an important research priority.

For more information, see Factsheet 436, MMSE, and Factsheet 407, Drug treatments for Alzheimer’s disease − or ask your GP.

People with vascular dementia will be treated for their vascular disease to try to prevent it from worsening. This may involve taking drugs to lower blood pressure and making lifestyle changes.

Other check-upsThe person with dementia should have regular sight, hearing and dental check-ups. Problems with sight can exacerbate confusion, while hearing difficulties can increase feelings of isolation. Problems with teeth, gums or dentures can result in discomfort and distress. For more details see Factsheet 448, Dental care and dementia, and Factsheet 522, Staying healthy.



Advance statements and advance decisionsAn advance statement is a statement of general beliefs and of aspects of life that a person values. An advance statement allows people to document what they would like to happen if they lose capacity to make or communicate decisions. Statements of wishes and preferences can range from personal preferences, such as having a shower rather than bath, to views about medical treatments that they would want to accept or refuse. An advance statement is not legally binding, and would not compel healthcare professionals to follow a particular course of action if it conflicted with their professional judgement.

An advance decision enables adults to refuse, in advance, a specific medical treatment or procedure should they become unable to decide for themselves in the future. An advance decision is legally binding, as set out in the Mental Capacity Act 2005 (for England and Wales), which came into force in October 2007. There is currently no legislation in Northern Ireland.

DrivingA person with a diagnosis of dementia does not necessarily have to stop driving immediately, but it is important to ensure that they are still driving safely. They must inform the Driver and Vehicle Licensing Authority (DVLNI) of their diagnosis. They must also inform their insurance company, or their insurance may become invalid.

The DVLNI will ask for medical reports and possibly a driving assessment in order to decide whether the person is able to continue driving. It will then either issue a new, limited licence (which will need to be regularly reviewed), or will revoke the licence.

For more information see Factsheet 439, Driving and dementia.

WorkingIf the person with dementia is still working and is experiencing any difficulties in their job, they should talk to their employer or get advice as soon as possible. Advice is available from a range of sources, including:

• their human resources department

• a trade union

• the Citizens Advice Bureau

• the disability employment adviser at the local job centre.



The employer may be able to adjust the person’s job to meet their changing needs, and they may be entitled to financial assistance to help meet the cost of supporting the person at work. The disability employment officer can give advice on this.

If the person decides to stop working, they should get advice about their pension from their employer or pension company. They should also find out what benefits they are eligible for (see ‘Benefits’, above).

If the person feels that their employer has treated them unfairly, they can seek advice from the Equality and Human Rights Commission helpline (details below).Your local Alzheimer’s Society branch will always be willing to talk to you and offer advice and information to support your needs.


How Health and Social Care Professionals Can HelpHealth and social care professionals can offer advice and services to people with dementia and their carers. Below is a list of some of the people you may have had contact with during the time that you were assessed. Following your diagnosis you may have contact with these professionals again dependant upon your needs.

Community mental health nursesCommunity mental health nurses, also known as community psychiatric nurses (CPNs), are mental health nurses who have had further training to work in the community. They provide treatment, care and support for people with mental health problems and dementia. They carry out assessments of people at home and can advise people with dementia and their carers on ways of coping, and of improving their health and quality of life. They do not normally carry out physical nursing tasks.

PsychiatristsOld age psychiatrists are psychiatrists who have had further training in the mental health problems of older people. Doctors provide a range of services to people with dementia. The consultant may prescribe drugs. These drugs are not a cure but may reduce symptoms in the short term.



Social workersSocial workers may be involved in assessing needs for services, and in planning, co-coordinating and advising on services. They can also offer support if you need to talk things through.

Clinical PsychologistsClinical psychologists assess memory, learning abilities and other skills, and offer support and therapy, as required. They often work as part of a team.

Occupational therapists OTs can advise on adaptations and equipment, and on ways of maintaining independence for as long as possible.





Drug Treatments for Alzheimer’s Disease

There are no drug treatments available that can provide a cure for Alzheimer’s disease. However, medicines have been developed that can improve symptoms, or temporarily slow down their progression, in some people. This factsheet explains how the main drug treatments for Alzheimer’s disease work, where to access them, and when they can be prescribed and used effectively. For more information about Alzheimer’s disease, see our factsheet What is Alzheimer’s disease? (401).

All drugs have at least two names: a generic name, which identifies the substance and a proprietary (trade) name, which may vary depending upon the company that manufactures it. This factsheet uses generic names and gives the most common trade names in brackets.

What are the main drugs used?There are two main types of medication used to treat Alzheimer’s disease - cholinesterase inhibitors and NMDA receptor antagonists - which work in different ways. Cholinesterase inhibitors include donepezil hydrochloride (Aricept), rivastigmine (Exelon) and galantamine (Reminyl). The NMDA receptor antagonist is memantine (Ebixa).

How do they work?Donepezil (Aricept), rivastigmine (Exelon) and galantamine (Reminyl)Research has shown that the brains of people with Alzheimer’s disease show a loss of nerve cells that use a chemical called acetylcholine as a chemical messenger. The loss of these nerve cells is related to the severity of symptoms that people experience.

Donepezil, rivastigmine and galantamine prevent an enzyme known as acetylcholinesterase from breaking down acetylcholine in the brain. Increased concentrations of acetylcholine lead to increased communication between the nerve cells that use acetylcholine as a chemical messenger, which may in turn temporarily improve or stabilise the symptoms of Alzheimer’s disease.

All three cholinesterase inhibitors work in a similar way, but one might suit an individual better than another, particularly in terms of side-effects experienced. (Current guidance for NHS treatment is that the cheapest of these drugs is generally tried first, see ‘NICE guidance’ below.)

Factsheet 407

Last reviewed: July 2011Updated: March 2012

Next review: July 2013

Reviewed by Dr Rupert McShane, Department

of Psychiatry, Universityof Oxford and Co-ordinating Editor, Cochrane Dementia and Cognitive Improvement

Group and Dr Denise Taylor, Senior Teaching

Fellow in Clinical Pharmacy, Department of Pharmacy

and Pharmacology,University of Bath.



Memantine (Ebixa)The action of memantine is quite different from, and more complex than, that of donepezil, rivastigmine and galantamine. Memantine blocks a messenger chemical known as glutamate. Glutamate is released in excessive amounts when brain cells are damaged by Alzheimer’s disease and this causes the brain cells to be damaged further. Memantine can protect brain cells by blocking these effects of excess glutamate.

Are these drugs effective for everyone with Alzheimer’s disease?The latest (2011) guidance from the National Institute for Health and Clinical Excellence (NICE) recommends that donepezil, rivastigmine and galantamine are available as part of NHS care for people with mild-to-moderate Alzheimer’s disease. There are also now several studies − including work supported by Alzheimer’s Society − which suggest that cholinesterase inhibitors may also help people with more severe Alzheimer’s disease. However, these drugs are not licensed in the UK for the treatment of severe Alzheimer’s disease.

Between 40 and 70 per cent of people with Alzheimer’s disease benefit from cholinesterase inhibitor treatment, but it is not effective for everyone and may improve symptoms only temporarily, between six and 12 months in most cases. According to an Alzheimer’s Society survey of 4,000 people, those using these treatments often experience improvements in motivation, anxiety levels and confidence, in addition to daily living, memory and thinking.

It is not clear whether the cholinesterase inhibitors bring benefits for behavioural symptoms such as agitation or aggression. Trials have given mixed results here. Research does suggest that these drugs (and memantine) bring some relief from the carer’s perspective.

Memantine is licensed for the treatment of moderate-to-severe Alzheimer’s disease. It can temporarily slow down the progression of symptoms, including everyday function, in people in the middle and later stages of the disease. There is evidence that memantine may also help behavioural symptoms such as aggression and agitation (see our factsheeets 408, Drugs used to relieve depression and behavioural symptoms and 509, Dealing with aggressive behaviour).

The 2011 NICE guidance (see below) recommends use of memantine as part of NHS care for severe Alzheimer’s disease and for patients with moderate disease who cannot take the cholinesterase inhibitor drugs.



Can memantine be taken at the same time as donepezil, rivastigmine or galantamine?A few studies have looked, with a range of conclusions, at whether combining donepezil with memantine is more effective than taking donepezil alone in moderate-to-severe Alzheimer’s disease. A recent trial provides strong evidence that, for people already on donepezil, there are important benefits for both patient and carer of the person remaining on donepezil when their Alzheimer’s disease has become severe and treatment with memantine is started.

Memantine works in a completely different way from the acetylcholinesterase inhibitors and, if a person stopped taking donepezil in order to try memantine, their symptoms could become worse, which could then make it difficult to assess their suitability for memantine.

This latest research was not reflected in the 2011 guidance from NICE which does not recommend the combination treatment. Whether doctors will prescribe both medicines together, especially on the NHS, is unclear.

Are there any side-effects?Generally, cholinesterase inhibitors and memantine can be taken without too many side-effects. Not everyone experiences the same side-effects, or has them for the same length of time, if they have them at all.

The most frequent side-effects of donepezil, rivastigmine and galantamine are loss of appetite, nausea, vomiting and diarrhoea. Other side-effects include stomach cramps, headaches, dizziness, fatigue and insomnia. Side-effects can be less likely for people who start treatment by taking the lower prescribed dose for at least a month (see ‘Taking the drugs’ section).

The side-effects of memantine are less common and less severe than for the cholinesterase inhibitors. They include dizziness, headaches, tiredness, increased blood pressure and constipation.

It is important to discuss any side-effects with the doctor and/or the dispensing pharmacist.

None of these drugs are addictive.



How can these drugs be obtained?In the first instance, these drugs can only be prescribed by a consultant. A GP will need to refer the person to a hospital for a specialist assessment. A consultant will carry out a series of tests to assess whether the person is suitable for treatment and will write the first prescription, if appropriate. Subsequent prescriptions may be written by the GP or the consultant.

Some people may wish to obtain these drugs privately. Private prescriptions can be obtained through a consultant, a GP or a private hospital. Private prescriptions are subject to consultation fees, prescription charges and dispensing fees, which vary.

The current cost of these drugs to the NHS ranges from £800 to £1,000 per patient each year. However, the UK patents for all these drugs are expiring during 2012 and prices will start to fall dramatically as competing ‘generic’ versions are introduced. Whether these drugs are obtained on the NHS or privately, the patient must be willing to take the treatment, and should discuss any possible benefits, risks or side-effects with the doctor.

Are these drugs effective for other types of dementia?The acetylcholinesterase inhibitors were developed specifically to treat Alzheimer’s disease. We do not yet know whether they can be helpful for people with other forms of dementia, although there is evidence that they may be effective in dementia with Lewy bodies and dementia related to Parkinson’s disease, for which rivastigmine is licensed. NICE guidelines allow acetylcholinesterase inhibitors to be offered to people with Lewy body or Parkinson’s disease dementia if they have distressing symptoms or challenging behaviours. (See factsheet 403, What is dementia with Lewy bodies? and 442, Rarer causes of dementia.)

There are several trials examining cholinesterase inhibitors for the treatment of vascular dementia, but the benefits are very modest, except in the individuals with a combination of both Alzheimer’s disease and vascular dementia. Cholinesterase inhibitors are not licensed for the treatment of vascular dementia. (See factsheet 402, What is vascular dementia?) Research is continuing.



Taking the drugsNICE guidelines (2011) recommend that the consultant seeks the views of the carer on the condition of the person with dementia before treatment and during follow-up appointments. They should also seek the patient’s views. The person must take the drugs as prescribed and the consultant will need to be sure that this is the case.

Dosages vary. Usually a patient will start on a low dose, which will be increased later to maximise effectiveness. Some people may not be able to take the highest dose due to side-effects. The doctor will prescribe the best dose for each individual. Information about doses is given below.

• Donepezil (Aricept) is administered once a day at bedtime. It is available in 5mg or 10mg tablets. Treatment is started at 5mg a day and then increased to 10mg a day after one month if necessary. The maximum licensed total daily dose is 10mg.

• Rivastigmine (Exelon) capsules or oral solution is taken twice a day, normally in the morning and evening. People start with 3mg a day in two divided doses, which will usually increase to a dosage of between 6mg and 12mg a day. An Exelon patch is also available in two versions. These deliver daily dosages of 4.6mg or 9.5mg with fewer side-effects than the capsules. Patches are suited to patients who struggle with oral medication and they are popular with carers. The maximum licensed total daily dose for rivastigmine is 12mg.

• The recommended starting dose for galantamine (Reminyl) is 8mg each day for four weeks, increased to 16mg a day for another four weeks and then a maintenance dose of 16-24mg daily. Galantamine is made in a variety of forms including a 4mg/ml (twice-daily) oral solution. Tablets of 8mg and 12mg are taken twice daily for maintenance doses. Slow-release capsules (Reminyl XL) are available as 8mg, 16mg and 24mg. These are popular because they need to be taken only once a day. The maximum licensed total daily dose for galantamine is 24mg.

• Memantine (Ebixa) comes in two forms, as 10mg and 20mg tablets, and as 10mg oral drops. The 10mg tablets can be broken in half, into 5mg doses, and taken with or without food. The recommended starting dose is 5mg a day, increasing after four weeks to up to 20mg a day. The maximum licensed total daily dose is 20mg. If the person misses a dose, they should take it as soon as they remember, if it is on the same day. If it is the next day, the person should not take two tablets but should simply continue with their normal dose.



Questions to ask the doctor• What are the potential benefits of taking these drugs?

• How long will it be before I see a result?

• How often do these drugs need to be taken?

• If I get side-effects, should I stop taking the drug immediately?

• What will happen if I stop the drug suddenly?

• What other treatments (prescription and over-the-counter) might interact with these drugs?

• Can I drink alcohol while taking the drug?

• How might these drugs affect other medical conditions?

• What changes in health should I report immediately?

• How often will I need to visit the clinic or surgery?

• Can someone with Alzheimer’s disease living in a residential or nursing home take these drugs?

• Are there any costs associated with taking these drugs?

• Why have I been prescribed one drug rather than another?

• If one drug proves ineffective can I try another drug?

Stopping treatmentMedication should be reviewed regularly and continued so long as the drug benefits outweigh any side-effects. If the person with dementia decides to stop taking a drug, they should speak to the doctor first, if possible, or as soon as they can after stopping treatment.

If someone stops taking their prescribed drug, their condition is likely to deteriorate more rapidly for several weeks. It is important to contact your doctor as soon as possible after stopping the medication if you think it should be re-started.



NICE guidanceThe National Institute for Health and Clinical Excellence (NICE) reviews drugs and decides whether they represent good enough value for money to be available as part of NHS treatment. In March 2011, NICE issued new guidance recommending that people with Alzheimer’s disease should now have increased access to the available drugs. The latest NICE guidance on drug treatments for Alzheimer’s disease recommends that people in the mild-to-moderate stages of the disease should be given treatment with donepezil (Aricept), galantamine (Reminyl) or rivastigmine (Exelon), including individuals with both Alzheimer’s disease and learning disabilities.

This differs from the previous (2006) NICE guidance, which indicated these drugs could be prescribed only to people in the moderate stage of Alzheimer’s disease.

The 2011 NICE guidance further recommends that memantine (Ebixa) should be prescribed as part of NHS care for patients with severe Alzheimer’s disease, or for those with moderate disease who cannot take the cholinesterase inhibitor drugs. This differs from the previous NICE guidance, which stated that memantine should not be prescribed as part of NHS care, but emphasised further studies as an important research priority.

The clinical care guideline on the care and treatment of people with dementia, which NICE publishes alongside its guidance, stresses that the severity of a person’s dementia should not be determined by cognition scores alone (eg Mini Mental State Examination), but by a more holistic view of the patient’s condition.

NICE guidelines permit people with dementia with Lewy bodies or dementia associated with Parkinson’s disease to be offered an acetylcholinesterase inhibitor if their non-cognitive symptoms (eg hallucinations, agitation) are causing distress or leading to challenging behaviour. The decision as to whether these treatments are appropriate for particular individuals lies with the specialist doctor.

In relation to the drugs for Alzheimer’s disease, NICE recommends that:

• treatment is started by a doctor who specialises in the care of people with dementia

• patients who are started on one of the drugs are checked regularly, usually by a specialist team



• the check-up includes an assessment of the patient’s cognition, behaviour and ability to cope with daily life

• the views of carers on the patient’s condition are discussed at the start of drug treatment and at check-ups

• treatment is continued as long as it is judged to be having a worthwhile effect

• where a cholinesterase inhibitor is given, the least expensive of the three drugs is prescribed first. However, if it is not suitable for the patient another cholinesterase inhibitor could be chosen.

Printed copies of CG42 Dementia: supporting people with dementia and their carers, or of Donepezil, galantamine, rivastigmine and memantine for the treatment of Alzheimer’s disease, can be ordered from NICE by calling 0845 003 7780, or downloaded from www.nice.org.uk. Alzheimer’s Society continues to campaign for drugs to be made freely available to anyone who may benefit from them. For more information, see alzheimers.org.uk/accesstodrugs





Counselling: How can it help? (Amended Information sheet 445)

Counselling is a talking therapy that gives people the chance to talk in confidence to a trained professional about problems or issues that are causing them concern. There are many different types of counselling available. This factsheet explains how counselling might help people with dementia, their carers and those who are close to them.

How does counselling work?Counselling consists of an agreed number of regular sessions between a counsellor or therapist and the person seeking support, often called the ‘client’. Sessions usually last for an hour, but they can be shorter. Counselling can last for a few weeks, several months or even years. The counsellor listens to the person’s concerns in a non-judgemental and supportive manner. Together, the counsellor and the client try to find ways for the client to cope and/or feel better about themselves and their situation. This may result in a more satisfying and manageable life.

Successful counselling depends more on the development of a trusting relationship between the counsellor and the client than on the type of counselling used. It is this relationship that can really help a person to feel better and deal more effectively with their problems. It is therefore important that people work with a counsellor whose approach and manner they are comfortable with.

The relationship between client and counsellor is confidential. This means what is discussed at the sessions will not be disclosed to anyone else. Some of the issues that the client will bring to the session may be distressing or embarrassing. This is normal. Sharing these feelings and thoughts in a supportive, safe and confidential setting is often helpful, and can be life changing.

Counselling can increase feelings of self-worth, well-being and capability, and help ease feelings of depression, anxiety, loss of control and sleeplessness.

Who can counselling help?Counselling can help anyone who wants to explore issues that may be concerning them. People from all walks of life have counselling for a wide range of concerns, issues and problems. Some people use counselling for personal growth and development, and as an investment in their own well-being. Others use it to help them cope with specific difficulties, such as serious illness or mental health problems. Counselling can be beneficial in many varied situations.

Information sheet 445



How long will it take?Some people get everything they need from one session or from just a few. Others prefer to work over a much longer period of time, for months or even years. There is no standard length of time for counselling. It depends on how the counsellor works, what the client needs and what the client and counsellor agree together.

How can counselling help someone with dementia?Being diagnosed with, and living with, dementia can raise many difficult feelings and thoughts. People find it understandably hard to make sense of what is happening to them and how their life is changing. Some feel angry, confused, frightened or anxious. Concerns about their family and friends may be tied up in how they themselves are feeling, and the person may find it difficult to discuss their feelings frankly with those who are close to them. Counselling may offer someone with dementia the opportunity to speak honestly about their feelings and work out ways to live with their condition.

Traditional counselling expects clients to have full use of their cognitive abilities. However, experience has shown that people with significant changes in their cognition (their memory, speech and thought processes) still respond well to the emotional content of the counselling sessions.

How can counselling help the carer of a person with dementia?Being close to someone with dementia, including as a carer or a caring professional, can feel overwhelming and lonely. In particular, carers often have very little time to themselves, and it is easy to get run down and exhausted. Many carers experience feelings of sadness, grief, guilt or anger. Counselling may help them to explore these feelings in confidence, as well as providing extra support outside their network of friends and family.

How can counselling help somebody who used to care for a person with dementia?A former carer or care worker may feel lost or sad when the person they have cared for moves away or dies. After the caring relationship ends, it may be difficult to move on, to recover from the loss and to accept a new and different role. This is a normal reaction. Counselling may help a former carer to accept the past and look ahead to the future.



What should I look for in a counsellor?If you are seeking counselling, it is important that you feel comfortable with the counsellor. This will depend on your own personality and that of the counsellor. You may need to speak to several different counsellors before you find the right person. It is also important to check that the counsellor:

• has at least a diploma in counselling from an accredited programme of counselling

• abides by a professional code of ethics

• has regular ongoing professional supervision to ensure safe and ethical practice

• discusses their approach, confidentiality, fees, length of sessions and responsibilities (yours and theirs) with you before committing to sessions.

What is the best way to find a counsellor?There are many ways to find a counsellor. A recommendation from someone else who has had counselling can be very helpful. Counselling services accessed through NHS referrals are usually free of charge. The Clinical Psychology service attached to your memory clinic, and Dementia team will be able to offer a therapeutic service to those who feel they need to talk about the emotional reaction to a diagnosis of dementia. GPs can often provide details of local counsellors, and some GP surgeries even run a counselling service. Your local social services department may also have information about local charities offering counselling services. The number will be in the phone book. Another option is to find a private counsellor. Most private counselling services operate a sliding scale for fees. The British Association for Counselling and Psychotherapy (BACP) can provide more information about counselling and local counselling services. See ‘Useful organisations’, below.

For details of Alzheimer’s Society services in your area, visit alzheimers.org.uk/localinfo.





Age Concern NI and Help the Aged3 Lower CrescentBelfast BT7 1NR

Telephone: 028 9024 5729Fax: 028 9023 5497Advice and Advocacy Freephone: 0808 808 7575Monday to Friday 9.00am to 4.00pm

Provides advice and information for older people in Northern Ireland.

Foyle OfficeAlzheimer’s SocietySeven Oaks FoldSeven OaksCrescent LinkLondonderryBT47 6AL

Tel: 028 71348887



Tel: 07715800031





Tel: 028 82240826Tel: 028 82250103



Tel: 028 6634 4073



British Association for Counselling and Psychotherapy (BACP)BACP House35-37 Albert StreetRugby, Warwickshire CV21 2SG

T 0870 443 5252

E [email protected] http://www.bacp.co.uk/http://www.counselling.org.uk/

National body representing counsellors and psychotherapists. Can provide a list of counsellors and psychotherapists in your area.



Carers UK20 Great Dover StreetLondon SE1 4LX

T 0808 808 7777 (free carers’ line, Wednesday and Thursday 10am-12pm and 2pm-4pm)

E [email protected] http://www.carersuk.org/

Provides information and advice to carers about their rights, and how to access support.




Depression Alliance212 Spitfire Studios63-71 Collier StreetLondon N1 9BE

T 0845 123 23 20

E [email protected] http://www.depressionalliance.org/

Provides information and support services to those affected by depression.



MindPO Box 277Manchester M60 3XN

T 0845 766 0163 (Mindinfoline 9.15-5.15 weekdays)

E [email protected] http://www.mind.org.uk/

The leading mental health charity in England and Wales. Publishes information on all aspects of mental health and providing a range of support through 200 local associations.

Samaritans

T 08457 90 90 90 (24 hours, seven days a week)

E [email protected] http://www.samaritans.org/

Samaritans provide confidential non-judgemental emotional support, 24 hours a day, for people who are experiencing feelings of distress or despair, including those which could lead to suicide. To find your nearest branch look in the phone book or on the Samaritans website (above).





Maintaining everyday skills (Amended Factsheet 521)

It is easy to assume that people with dementia inevitably lose all their skills and become incapable of carrying out everyday activities. With time, dementia will affect a person’s skills but there are plenty of ways to make sure they stay active for as long as possible. This factsheet suggests a range of ways to help someone with dementia to feel good about themselves and continue to take part in everyday activities.

Help the person maintain their independencePeople with dementia need to continue carrying out as many of their previous activities as independently as possible, in order to retain their skills. Doing things for themselves will enhance their physical, social and emotional well-being, through the preservation of their dignity, confidence and self-esteem.

If you spend time with someone with dementia, you need to support and encourage them to do whatever they can for themselves, and to offer only as much help as they need. This is not always easy - not least because it may be frustrating watching something being done slowly when you could do it more quickly and easily yourself. But even if the person is struggling with a task, try to avoid the temptation to take over. If you do, they may lose confidence and are likely to cope less well.

Tips: helping out• If you do need to offer help, try to do things with, rather than for, the person. This will help them feel more involved.

• Always try to focus on what the person can do rather than what they can’t.

• Remember that they may have a short attention span and may find it hard to remember or concentrate on things.

• Try to be patient, and allow plenty of time.

• Give plenty of praise and encouragement.

• If you feel yourself becoming irritated or frustrated, think how the person might also be feeling. Take time out to give yourself, and the person, some time alone. If you feel that you both need some time apart, make sure that the person is safe, then go into another room for a few minutes. Remember, it is important to look after yourself - for more advice, see Factsheet 523, Carers: looking after yourself.

Factsheet 521Last updated: Aug 2008

Last reviewed: Aug 2008



Offer help sensitivelyAs the dementia progresses, the person may find certain tasks increasingly difficult, while others may remain manageable for much longer. By helping sensitively, you can offer support while enabling them to do what they can for themselves. You will need to adjust the level of help you offer, so that they can continue to make the best use of their remaining skills.

Tips• Try breaking the task down into sections. For example, the person may find it easier to continue dressing themselves if you put their clothes out for them in the order that they need to put them on. Or you could pass the next garment to them, holding it out ready for them to grasp at the right place, or encourage them to put their vest on over their head before you straighten it down for them.

• Even if the person can’t complete a full task, achieving one or two steps of it - particularly the final step - can give them a sense of achievement.

• Make sure that any reminders or instructions are simple. Use short sentences, with gestures and body language to add meaning.

• Be tactful. Try to imagine that you are the person receiving help, and speak in a way that you would find helpful if you were in their position.

• Try doing things together, such as folding clothes or drying dishes.

• Try integrating opportunities to do things into the daily routine.

• Make sure that the person doesn’t feel that they are being supervised or criticised in any way. This means checking your tone of voice as well as the words that you use.

• When the dementia is at a more advanced stage, try pointing, demonstrating, or guiding an action rather than giving a verbal explanation. For example, the person may be able to brush their own hair if you hand them the brush and start by gently guiding their hand. Use your voice to make reassuring and encouraging sounds rather than using actual words.

Make sure the person feels safeFeeling safe is essential for our sense of well-being, but for a person with dementia the world may feel like an unsafe place for much of the time. Most of us can only imagine how frightening it must be to experience the world in this way.



Tips• Respond to how the person is feeling at that very moment.

• Be reassuring, and avoid confronting them with distressing reminders or tasks.

• Remember, the more you can help the person not to feel anxious and stressed, the more likely they are to be able to use their skills to the best advantage.

Make sure they have things to doWe all need to feel useful. This is as true for people with dementia as it is for anyone else. Encouraging the person to carry out activities around the home or garden is a way of enabling them to feel needed while maintaining their everyday skills. In the home, they may like to carry out simple tasks, such as dusting, polishing, folding clothes, laying and clearing tables, drying dishes and sorting cutlery. Work in the garden might include digging, watering, raking or sweeping leaves.

Leisure activities are equally important. Try to help the person maintain skills related to their past interests and habits. For example, if they used to enjoy carpentry, they may get satisfaction from sanding a piece of wood. If they enjoyed cooking, they may be able to advise you on a recipe or help prepare a particular dish by peeling the vegetables. Encourage the person to go outdoors and possibly on accompanied outings to the shops, garden centre and other public places. Sitting and chatting, watching others and listening to music all count as ‘activities’. Opportunities to engage with children and animals can bring lots of pleasure too.

Tips• Remember that it’s more important that the person feels useful than that they complete the task perfectly.

• If you do have to redo a task that they have done, be very tactful, or try to do it without their noticing.

• Always thank the person for their help.

Use memory aidsYou can use memory aids and other reminders to help the person use their skills for longer. These may be of most help in the early stages of dementia when the person is better able to understand the message and to act upon it.Ideas include:



• labelling cupboards and drawers, perhaps using pictures rather than words - for example, a photo of a cup and jar of coffee

• a large calendar showing the day, month and year

• a noticeboard for messages

• notes stuck by the front door.

There are also a number of technological aids specially designed to help people with memory problems. For more information, see Factsheet 437, Assistive technology.

Help the person relaxA person will be at their best if they are relaxed. There are plenty of things you can do to help the person feel calm and secure.

Tips• Ensure that the person is as close as possible to people and things that they recognise, and that they enjoy being with.

• Make sure the atmosphere is relaxed and uncritical.

• Try to ensure familiar surroundings and a regular routine, as this will be reassuring.

• Try to avoid too many conflicting sounds or large numbers of people, as this can add to a person’s confusion. If possible, turn off the radio or the television. If the person needs to concentrate on something in particular, take them to a quiet place.

• If the person becomes upset or embarrassed by their declining abilities or clumsiness, give them plenty of reassurance, and when things do go wrong, be tactful and encouraging. Having a good laugh about it together often helps.

Consider seeking professional adviceIf the person with dementia finds it particularly hard to cope with certain activities, either because of the dementia or because of other disabilities, there may be some recognised solutions out there. An occupational therapist will be able to advise on aids, adaptations and different approaches to practical tasks, to help



the person retain their independence for as long as possible. You can contact an occupational therapist through:

• social services (look in the phone book under your local council)

• your GP

• your local Memory Service (ask your local hospital for details)

• the College of Occupational Therapists (see ‘Useful organisation’), if you would like details of a private practitioner.

If the occupational therapist recommends any changes, try to make them as soon as possible, to give the person the best chance of absorbing new information. The earlier you contact an occupational therapist, the more effective their solutions will be. Your local Alzheimer’s Society branch will always be willing to talk to you and offer advice and information to support your needs.






Coping with Memory Loss

Memory loss is a distressing part of dementia, both for the person with dementia and for those around them. However, there is plenty that can be done to help manage memory problems, to enable people to retain their confidence and independence for as long as possible.

When is memory loss associated with dementia?Memory loss is often one of the first signs of dementia. Initially, memory lapses may be mistaken for the normal forgetfulness that often increases as people grow older or when they become very stressed. However, in someone with dementia it will gradually become apparent that the memory problems are becoming more severe and persistent. They will also be accompanied by changes in thinking and feeling that make it more difficult to cope with everyday life.

With memory, as with any other aspect of dementia, everyone is different. Memory loss can work in various ways, and each person with dementia will be affected slightly differently. For example, some people with dementia retain certain skills until quite a late stage, and may recall a surprising range of facts or experiences, even though they are very forgetful in other areas.

Supporting someone with memory lossIf the person’s forgetfulness could put them at risk in any way, it is important to take certain precautions. These might include leaving a reminder by the door so that they don’t forget their keys when they go out, or fitting a device that cuts off the gas supply if they put a pan on the stove and then forget about it. However, on the whole, it’s important to help a person continue to do things for themselves and to remain independent for as long as possible. Those around the person with memory loss should be flexible and patient, and encourage them to remember what they can without making them feel pressured − using frequent reminders and doing things with, rather than for, them.

Although memory loss affects each person differently, there are some characteristics that are relatively common in people with dementia. It can be helpful to understand how memory loss works, and to learn about some of the ways that professionals and carers manage the situation. There are four common areas in which people with memory loss often experience difficulty:

• remembering recent events

• taking in new information

Factsheet 526Last updated: May 2010

Last reviewed: May 2010

Reviewed by Cathy Baldwin, Programme Delivery manager,

Knowledge and Learning, Alzheimer’s Society.



• remembering people

• separating fact from fiction.

Coping with memories of the distant pastMost people with dementia remember the distant past more clearly than recent events. They will often have difficulty remembering what happened a few moments ago, but can recall minute details of life when they were much younger. However, with time, even these long-term memories will eventually decline.

People with dementia are often understandably anxious about forgetting their past − particularly in the early stages of the condition. Those around them should try to provide opportunities to share memories by looking at photographs and souvenirs together. This can help jog the person’s memory, and may help them feel more calm and in control. Talking about the past can be enjoyable for the person with dementia and those around them, and may help the person retain their sense of who they are.

Sometimes, a person with dementia may seem to be living in the past and insist, for example, that they have to wait for their mother to take them to school. If this happens, those around them should try to relate to what the person is remembering or feeling, rather than contradicting what is being said.

Not all memories are happy ones. If the person seems very upset by certain memories from the past, they will need the chance to express their feelings, and to feel that they are understood. If they seem sad, it can help to encourage them to talk about it and offer comfort, rather than changing the subject.

Taking in new informationPeople with memory problems often find it very hard to absorb and remember new information. In some people with dementia, the part of the brain that allows new information to be processed may be damaged, so if the person denies having heard the information before, they may well be telling the truth. Their brain has not retained what it has been given, leaving them feeling that this is the first time they have heard it.

The following tips will help:

• Keep information simple, and repeat it frequently.

• Break new activities down into small steps.



• Try to begin new routines or regimes early on in the dementia, while the person’s memory is still relatively intact.

Recognising peopleSomeone with dementia may eventually lose the ability to recognise people, places or things because the brain can no longer remember things or put information together. The person may even fail to recognise their own reflection in a mirror and think it is someone else, or worry that a relative or close friend is an intruder in their home.

This can be distressing for the person, but it can also be upsetting for those around them. If this happens, try to find tactful ways to give the person reminders or explanations. This will reassure them, and will help them to continue to make some sense of their environment and the people around them. If a person’s friends or family feel that the person no longer recognises them and they find this very distressing, it’s important that they talk these feelings through with someone they trust.

Fact versus fictionAs dementia progresses, the person may sometimes confuse fact with things they have imagined. If this happens, try to focus on the feelings they are trying to express, and relate to them, rather than correcting the detail. For example, if they think their bag has been stolen when actually they have just put it somewhere and forgotten, this may indicate feeling insecure and that the world is a threatening place. The feeling is true (a sense of feeling threatened) even if the details (the bag being stolen) are not.

No one likes being corrected all the time − at best it is irritating, and at worst it can severely undermine a person’s confidence. If we continually correct the small details of what a person with dementia is saying, they may become reluctant to join in conversation or activities. For this reason, it is important to focus on the emotions behind the statement rather than the facts or details.

There may be some instances where it is important to contradict or correct what the person with dementia is saying − for example, if they incorrectly accuse someone of something. In this case, it must be done sensitively, in a way that saves face and does not seem critical.



Tips: practical steps to help the memoryAvoid unnecessary stressIf someone is tired, unwell, anxious or depressed, they will find it even more difficult to remember things. The memory problems will also become more apparent if they try to do more than one thing at a time, or if they are distracted by noise or bustle.

Help keep the person’s life relatively stress-free − for example:

• Make sure they have plenty of support.

• Help them to concentrate on one thing at a time.

• Try to make sure that there are no distractions, such as background noise or lots of people.

• Provide verbal cues rather than asking questions that might make the person feel ‘put on the spot’. For example, say: ‘Look − here’s David, your nephew, who has come to see you’, rather than ‘Do you remember who this is?’

• Make sure the person gets enough exercise, which helps reduce pent-up tension.

If you think that the person seems highly anxious or depressed, consult the GP.

Put a regular routine in placeAlthough variety and stimulation are important, too many changes can be confusing for a person with dementia. Setting up a regular routine will help someone feel more secure, and will make it easier to remember what usually happens during the day. It is also a good idea to leave things in the same place, so that they can be found more easily.

People can begin to lose their sense of time quite early on in dementia. If they can’t remember what they have done, or what they are going to do that day, they may find it hard to judge how much time has passed or to anticipate what will happen next. Keeping to a regular routine can help with this difficulty, as will tactful reminders of the day and time, and about what is going to happen next.



Make the most of memory aidsIn the early stages of dementia, memory aids such as lists, diaries and clear, written instructions can help jog the person’s memory if they are willing and able to make use of them. As the dementia progresses, the person may become less able to understand what the aids are for.

For more information about memory aids, see Factsheet 429, Equipment to help with disability and Factsheet 521, Maintaining skills.







Driving and dementia (Amended Factsheet 439)

If someone has been diagnosed with dementia, they may be able to continue driving for some time. However, they must fulfil certain legal requirements. When the person’s condition deteriorates to the point where they are unsafe on the road, they must stop driving. Many people find this very difficult to accept. This factsheet explains the legal situation, and gives some tips on stopping driving.

Can a person with dementia still drive?A diagnosis of dementia is not in itself necessarily a reason to stop driving. What matters, from both a legal and a practical point of view, is whether or not an individual is still able to drive safely. For experienced drivers, driving may seem to be a largely automatic activity. In fact, driving is a complicated task that requires a split-second combination of complex thought processes and manual skills. To drive, a person needs to be able to:

• make sense of and respond to everything they see

• ‘read the road’

• follow road signs

• anticipate and react quickly to the actions of other road users

• take appropriate action to avoid accidents

• remember where they are going.

Many people with dementia retain learned skills and are able to drive safely for some time after diagnosis. However, as dementia progresses it has serious effects on memory, perception and the ability to perform even simple tasks. People with dementia will, therefore, eventually lose the ability to drive. The stage at which this happens will be different for each person with dementia.

What if someone is unsure of their ability to drive?If someone with a diagnosis of dementia is unsure of their ability to continue driving, they can take a driving assessment. To do this, they need to contact the Enquiry team at the local Driver Licensing Central Office, which is located at County Hall, Coleraine, who will apply on your behalf for a driving assessment, if this is indicated.

An assessment is not like a driving test. It is an overall assessment of the impact that the dementia is having on a person’s driving performance and safety, and it makes some allowances for the bad habits that drivers get into.

Factsheet 439Last updated: March 2010

Last reviewed: July 2008

Reviewed by Dr AM White MB BCh, Medical Adviser, Drivers

Medical Group, DVLA.



Giving up drivingMany people with dementia choose to stop driving because they begin to find it stressful or they lose confidence. A person should consider stopping driving if:

• they feel less confident or more irritated when they drive

• they feel confused if there are roadworks, for example, on a familiar route

• they feel worried about having an accident.

A person who feels like this will need support and understanding from their carer and family members. They may feel bad about stopping driving if they are accustomed to being independent, or if they have always driven their partner or family around. However, it is better to travel safely on public transport than risk an accident in a car. If the person with dementia decides to stop driving, they should return their licence to the Driver and Vehicle Licensing Agency (DVLNI) − see ‘Useful addresses’.

Continuing to driveIf someone receives a diagnosis of dementia and wants to continue to drive, they must, by law, inform the DVLNI. Notification of the diagnosis should be sent with the person’s full name, address, date of birth and the driver number on the driving licence, if known, to the Driver Licensing Central Office (see ‘Useful organisations’).

The DVLNI will send the person a questionnaire that seeks permission for the DVLNI to obtain medical reports from the person’s GP and/or specialists. Once the person returns this questionnaire, the DVLNI will contact their consultant (or, if no consultant details are provided, their GP). Based on the medical information it receives, it will make a decision as to whether the person can continue to drive. The DVLNI may also ask the person to take a driving assessment.

A person with a diagnosis of dementia would be breaking the law if they did not tell the DVLNI about their diagnosis, and could be fined. If a person with dementia does not inform the DVLNI about their diagnosis and continues to drive against advice from their doctor, the doctor may inform the DVLNI if he or she feels that public safety or road safety would be at risk. Other people, such as family members, neighbours or police officers, may also contact the DVLNI in writing and ask it to carry out a medical investigation if they are concerned about a person’s fitness to drive.



A person with a diagnosis of dementia must also immediately inform their car insurance company. If they do not, their policy may become invalid. It is a criminal offence to drive without at least third party cover.

When the DVLNI decides that the person can continue drivingIf, following its medical enquiry, the DVLNI decides that the person can continue to drive, they will issue a new driving licence that will be valid for a limited period. For someone with dementia, the licence duration is usually for one year, although in very early cases it may be longer, up to a maximum of three years. The person’s condition will be reviewed at least once a year. It is also a good idea for relatives, or others close to the person with dementia, to tactfully monitor the person’s driving skills on a regular basis.

Reducing the risksSomeone with dementia can take steps to minimise their risk through driving. Short drives on familiar roads at quiet times of day generally present fewer problems than long, unfamiliar journeys or journeys in heavy traffic.

People on certain types of medication, such as night sedation or drugs for anxiety, depression or other psychiatric disorders, may find that their driving ability is affected. If this is a problem for you or someone you know, ask the GP or consultant whether anything can be done.

When the DVLNI decides that the person must stop drivingIf, following its medical enquiry, the DVLNI decides that the person cannot continue driving, the person must return their driving licence to the DVLNI. However, there is an appeal process.

Tips: encouraging someone to stop drivingGiving up driving is not always an easy decision to make. Someone with dementia may be very reluctant to stop driving even if the DVLNI has concluded that they are not safe to drive. They may need some encouragement from carers, family members or friends.

• Acknowledge how difficult it may be for the person. They may have relied on driving as their main means of transport for much of their life, and may feel unhappy about losing some of their independence. Giving up driving will seem especially hard if physical problems make it difficult to use public transport, or if cuts in local public transport make it difficult to get about without a car.



• Encourage them to take charge of their new transport arrangements − perhaps by getting details and timetables of local transport services, or opening and managing their own taxi account.

Point out some alternatives to driving. For example:• They could get a taxi to take them to the supermarket once a month. They could set up an account with a taxi firm they trust and like, and order taxis in advance.

• They could get a shoppers’ bus to the supermarket and back.

• If they have a computer, they can order all their shopping online and have it delivered to the house.

• They could ask the hospital about a driver to take them to hospital appointments.

• They could pay their bills by Direct Debit so that they don’t need to visit the bank or post office so often.

Point out some of the benefits to not driving. For example:• The person will no longer have to look for parking spaces or pay for parking permits.

• They will no longer have to pay for petrol and car insurance, freeing up a significant amount of money each month.

• They won’t have the stress of remembering routes and finding their way.

• Public transport can be sociable. They may like to chat to people on the bus.

• They may get more exercise if they decide to walk instead.

If the person refuses to stop drivingSome people who have been assessed as being unsafe still refuse to stop driving, even if those around them have tried to encourage them to stop, and have pointed out alternatives. This can be a very difficult and upsetting situation. Unfortunately, there are no straightforward solutions. The best action to take will depend on the individual involved.

If someone you know is in this situation, call the Alzheimer’s Society Dementia Helpline.



Your local Alzheimer’s Society branch will always be willing to talk to you and offer advice and information to support your needs.



Alzheimer’s Society Foyle OfficeSeven Oaks FoldSeven OaksCrescent LinkLondonderryBT47 6AL




Omagh OfficeAlzheimers SocietyDoctor’s ResidenceHospital RoadOmaghBT79 0APTel: 028 82240826Tel: 028 82250103Email: [email protected]: [email protected]




Tel: 028 6634 4073Email: [email protected]

Driver Licensing Central OfficeCounty HallCastlerock RoadColeraineCo. L’DerryBT51 3TB

Telephone: 028 703 41340 (9.00am – 5.00pm)

DRIVINGDriving is a complicated skill requiring a high level of perception, co-ordination, alertness and decisiveness. Many relatively mild illnesses, disabilities and drugs can adversely affect driving ability, particularly in new or unexpected circumstances. Such changes may sometimes not be obvious until the driver is confronted with an unforeseen situation – and then it may be too late.

For a person with significant memory difficulties there may be associated problems with perception, co-ordination, alertness, and decisiveness. For this reason, at the Memory Clinic we will normally discuss a patient’s driving safety, and may at some stage of illness advise that driving is stropped completely.

Some of the strengths and weaknesses highlighted by the psychologist’s assessment will be directly related to skills and abilities needed for safe driving.

Giving up driving may involve a ‘significant loss’ of independence and self-esteem. The decision is seldom easy, but does eliminate any possibility of a costly and avoidable accident. It is worth remembering that the Automobile Association calculates that use of public transport and taxis is usually more economical than using a personal motor car for those who travel less than 4000 miles per year!



THE LAWAll holders of a Northern Ireland Driving License are required by law to inform the Driver and Vehicle Licensing Centre (Northern Ireland) (DVLNI) in Coleraine, at once if they have any disability which may now, or in the future, affect their fitness as a driver. The only exception to this rule is if the disability is not expected to last more than 3 months.

Most car insurance companies also expect to be told of any problem which potentially may influence driving skills or they will regard the insurance policy as invalid. Once informed they may refuse to continue insuring the premium. Different companies have different practices.

WHOSE RESPONSIBILITY?It is the responsibility of the driver to inform the DVLNI of any relevant medical problems or disabilities and for family members to persuade him/her to do so. Doctors and other professionals are required to inform you if you have any condition which may now or may in the future interfere with fitness to drive. If the patient continues to drive without informing the DVLNI then they do so illegally and further action may be necessary.

WHAT HAPPENS NEXT?Once the DVLNI have been informed that a driver has memory difficulties they may:

(a) ask for a medical report before deciding what action to take.or(b) permit the driver to continue but request regular medical reports, perhaps at yearly intervals.or(c) immediately suspend the driving license and request its return to the DVLNI offices.

USEFUL ADDRESSES

Driver Licensing Central OfficeCounty HallCastlerock RoadColeraine, Co. L’DerryBT51 3TB

Telephone: 028 703 41340 (9am–5pm)





Financial and legal affairs (Amended Factsheet 467)

If a person has dementia, it is important that they organise their financial and legal affairs while they are still able to do so. This ensures that in the future, their affairs will be set up in a way that they have chosen. The person may want a friend or family member to help them with this.

Make sure that all important papers are in order and that you know where to find them. These papers might include bank and building society statements, records of mortgage or rent, insurance policies, a will, tax and pension details and bills or guarantees.

(For more information see Factsheet 472, Enduring power of attorney and lasting powers of attorney.)

BenefitsIt is important to make sure that the person with dementia and their carer are receiving all the benefits to which they are entitled. For full details see Factsheet 413, Benefits, or contact the head office of the Department of Health, Social Services and Public Safety (DHSSPS), or your local office (for details, contact the head office or look in the phone book). Alternatively, check with the Benefits Enquiry Line or your local Citizens Advice Bureau or advice agency. (For contact details of these organisations, see ‘Useful organisations’, at the end of this sheet.)

Using an agentIf a person would like their benefits to be paid through a local post office but would prefer not to collect them in person, they can nominate another person, known as an ‘agent’, to collect their money on their behalf.

Many people arrange for someone else to collect their benefits occasionally, on an informal basis. They simply fill in the person’s name and sign the declaration on the reverse of the relevant benefit order form. However, those wishing to make a regular arrangement should inform their local Department of Health, Social Services and Public Safety (DHSSPS) so that the person’s name can be put in the benefits book as an authorised agent.

An agent can only be appointed by someone who understands what this involves, and is able to manage their own finances, with support from others. However, this arrangement can be very helpful, and is best arranged in the earlier stages of dementia.

Factsheet 467Last updated: Feb 2009

Last reviewed: July 2008

Reviewed by Sara Wilcox, Legal and Welfare Officer,

Alzheimer’s Society and Linda Gabriel, Solicitor,

Thackray Williams.



Payment arrangementsThere are four ways in which you can receive your benefits:

• You can have your benefits paid into your bank or building society account.

• You can have your benefits paid into a basic account at your bank or building society, with additional access at your post office.

• You can access your benefits at your post office with a card and PIN number.

• You can nominate someone else to have a card to access your account.

AppointeeshipThe person with dementia may eventually become unable to manage their income from benefits. Someone else may then need to administer this income in the person’s best interests, to ensure that all benefits are claimed and essentials paid for. This can be arranged through an ‘appointeeship’.

The person who is prepared to act on behalf of the person with dementia should contact their local Department of Health, Social Services and Public Safety (DHSSPS). They should explain that the person with dementia is no longer able to manage their affairs and that they wish to become their appointee. Once they have completed the relevant form, a representative from the Department of Health, Social Services and Public Safety (DHSSPS) may visit the person with dementia, or ask for medical or other evidence, to confirm that they are no longer able to act on their own behalf. The representative should also check that the prospective appointee is suitable and understands their responsibilities.

Wherever possible, the appointee should be a close relative who either lives with the person with dementia or visits them frequently. In certain circumstances, the appointee might be a friend, neighbour, or caring professional.

The appointee:• should report any change in the person’s circumstances that may affect benefit entitlement

• may sign on behalf of the person with dementia, if they are a non-tax payer, to enable bank and building society interest to be paid without deducting income tax

• can only deal with the person’s income from benefits, except for small amounts of savings (about £500), which can be used to meet unforeseen emergencies.



An appointee can resign if they feel that they are no longer able to carry out the task. The Department of Health, Social Services and Public Safety (DHSSPS) can also revoke the appointeeship if it has evidence that the appointee is not acting in the person’s best interests. If someone starts to act on behalf of the person with dementia under a registered enduring power of attorney, or is made a deputy by the Office of Care and Protection, this person usually takes over from the appointee in dealing with benefits. If the deputy and the appointee wanted to work side by side then they would have to agree this with the Office of Care and Protection first.

BankingThere are ways in which banking can make it easier for a person with dementia to manage their money. These include:

• having benefits paid directly into the bank or building society account on a four-weekly basis

• paying regular bills through direct debit or standing order. Joint accountsMany people have joint bank accounts. A joint account may be a useful way of managing finances in the early stages of dementia. However, most joint bank accounts are set up to operate only when both parties have capacity to run the bank account. If a bank knows that someone is acting as an enduring power of attorney, lasting power of attorney or deputy for someone, they will usually want a separate bank account for the person with dementia rather than a joint account. In terms of separating finances, when it comes to paying for care it is also advisable to have separate accounts. This is because a local authority ought to be means testing the person who is in receipt of the service (for example, home care or residential care), and no one else.

TrustsIf the person with dementia has financial assets, such as property or savings, they can set up a trust. This ensures that the assets are managed in a way that the person chooses, both now and in the future. There are a number of different kinds of trusts and ways of arranging them.

If a person in the early stages of dementia wants to do this, they should consult a solicitor while they are still able to convey their wishes clearly. It is important that the trust is set up well before the person needs care in a care home. This is because the local authority needs to be sure that the person with dementia



has not set up a trust to deliberately deprive themselves of assets that could contribute towards the cost of their care.

WillsEveryone should make a Will. A Will ensures that when a person dies, their money and possessions go to people of their choosing. People with dementia who wish to make or change their Will should seek legal advice from a solicitor as soon as possible.

People with dementia may still have ‘testamentary capacity’ − in other words, the legal capacity to make or change a Will. The solicitor will make a decision about this, often after taking medical advice.

People who no longer have testamentary capacity because of their dementia cannot make or change a Will, and no one can do so on their behalf, except for the Office of Care and Protection, which in certain circumstances can make a statutory will. A solicitor can explain this further, and the Court of Protection can send out information on statutory Wills (see details below).

A partner, relative or close friend of the person with dementia may also want to make or change their Will. They may wish to leave some or all of their estate to people other than the person with dementia − for example, their children.

If a person wishes to leave some or all of their estate to a person with dementia, they should consider setting up a trust to ensure that the assets are used in the best interests of the person with dementia. They should also check what effect a bequest will have on any state benefits that the person receives.

Where to go for helpPeople with dementia and their carers may need help managing their financial and legal affairs. The following sources may be useful, as well as the organisations listed at the end of this factsheet.

Citizens Advice BureauThe local Citizens Advice Bureau (CAB) is often the best starting point for advice. The service is free, confidential and independent. Trained CAB advisers offer information and advice on a range of issues including benefits, housing, debt and employment. They may be able to help you resolve the problem or they may provide details of other professionals or organisations.



Many CABs have a solicitor able to give free advice, and some also have an accountant, and can often provide information in a range of languages, or refer people to an interpreting service. Local opening times and arrangements vary: some offer appointments, while others offer a drop-in service where people have to walk in and wait their turn. Some CABs have telephone advice sessions too, but lines tend to be very busy. An increasing number of CABs provide an email service, and most accept queries by letter.

For details, see ‘Useful organisations’ at the end of this factsheet.

Some local neighbourhoods also have advice centres, which provide advice on financial or other problems. To find out what services exist in your area, ask at your library or town hall.

Financial advisersIf you are managing savings or investments, you may need professional financial advice. You can seek advice from an adviser attached to a bank or group of companies, who can advise you on the range of products they provide. Alternatively, you can see an independent adviser who can advise you on a wider range of products.

If you would like to consult an independent financial adviser, ask for a recommendation from someone you trust or contact the Independent Financial Advisers Promotion, which will send you details of four advisers in your area and a voucher offering a free consultation. You may need to talk to several advisers on the phone before making up your mind. Some charge a fee and others a commission and some charge either/or. Check before you make an appointment.

(For contact details, see ‘Useful organisations’ at the end of this factsheet.)Solicitors

When completing legal documents, it is advisable to seek advice from a solicitor. This ensures that they are completed correctly and are legally valid. Alzheimer’s Society can give details of legal firms with specialist experience in legal problems arising in relation to dementia. Check with the solicitor whether you qualify for public funding.

Firms offering both legal and financial adviceSome law firms also employ independent financial advisers, making it easier to combine financial and legal advice. Your local Alzheimer’s Society branch will always be willing to talk to you and offer advice and information to support your needs.



For more information, Dementia Catalogue, our specialist dementia information resource, is available on the website at alzheimers.org.uk/dementiacatalogue.

Useful organisations in Northern Ireland

Alzheimer’s Society Foyle OfficeSeven Oaks FoldSeven OaksCrescent LinkLondonderryBT47 6AL





Tel: 028 82240826Tel: 028 82250103Email: [email protected]: [email protected]








Advice NIContact the regional office on: 028 9064 5919.

Law Centre (NI)Advice line: 9.30am – 1.00pm

Law Centre (NI) Belfast: 028 9024 4401Law Centre (NI) Derry: 028 7126 2433

The advice line covers community care e.g. rights on access to services, carers’ rights and funding and other issues relevant to community care, mental health, immigration and employment issues.



Office of Care and ProtectionThe Office of Care and Protection is part of the Family Division of the High Court which deals with the affairs of Patients under the provisions of Part VIII of the Mnetla Health (Northern Ireland) Order 1986. Its contact details are:

The Office of Care and ProtectionRoyal Courts of JusticeChicester StreetBelfastBT1 3JF

Tel: (028) 9072 4733 or (028) 9072 5933Fax: (028) 9072 5939Website: http://www.courtsni.gov.uk

Benefits FactsheetIn conjunction with Carers NI the Western Trust has a Benefits factsheet for Carers 2012/13. Please contact Cathy Magowan for copies.

Cathy MagowanCarer Support CoordinatorWestern Health and Social Care Trust2 Coleshill Road, EnniskillenCo. Fermanagh BT74 7HG

Tel: (028) 6634 4000 Direct Line (028) 6634 4163Email: [email protected]

Email requests accepted or access from the Western Trust website.www.westerntrust.hscni.netAlso visit www.nidirect.gov.uk



Local Branch Information

Alzheimer’s Society





Services in Foyle

Alzheimer’s SocietySeven Oaks FoldSeven OaksCrescent LinkLondonderryBT47 6AL




Services offered• Carer Information ProgrammesStructured sessions providing information about living with dementia, including types of dementia, legal issues, benefits and emotional issues.

• Dementia Support ServiceOur Outreach Service offers information and emotional support to people with dementia and their carers through direct contact visits in or beyond the family home.

• Home Care Service For Older People With DementiaProviding care and support for individuals, usually in their own homes, and including activities and outings, again providing support and respite.

• Home Care Service For Younger People With DementiaSpecialist home respite and activity service to clients in own home on a regular basis to give the main carer(s) a break.



• Information & SignpostingProviding information for anyone with any concern about dementia by providing a mix of information packs, leaflets and other publications, telephone information, loan libraries and meetings. • Roe Valley Support GroupThe Foyle office of the Alzheimer’s Society hold a Support Group meeting in the Day Care Centre at Cornfields Care Centre, Seacoast, Limavady on a monthly basis (usually the 2nd Wednesday in the month) providing advice and support to carers and former carers of people with Dementia.

• Seven Oaks Support GroupThe Foyle office of the Alzheimer’s Society hold a support group meeting in the Day Care Centre at Seven Oaks Fold, Crescent Link, L’Derry on a monthly basis (usually the 1st Wednesday in the month) providing advice and support to carers and former carers of people with Dementia.

• Strabane Dementia caféCafé style supported social get-togethers, providing a combination of information, knowledge and support within a structured and understanding environment.

• Strabane Drop In ClinicThe service offers community support by providing information at the local memory clinic, signposting of services and providing information for anyone with any concern about dementia by providing a mix of information packs, leaflets and other publications, telephone information, loan libraries and meetings. • Strabane Support GroupThe Foyle office of the Alzheimer’s Society hold a support group meeting in the Day Care Centre at Melmount Manor Private Nursing Home, 1 Orchard Rd, Strabane on a monthly basis (usually the 3rd Wednesday in the month) providing advice and support to carers and former carers of people with dementia.



Services in Omagh

Alzheimers SocietyDoctor’s ResidenceHospital RoadOmaghBT79 0AP

Tel: 028 82240826Tel: 028 82250103


Services offered• Carer Information ProgrammesThese programmes are run periodically providing family carers, friends and relatives with the opportunity to learn about and discuss issues surrounding dementia. They are structured sessions providing information about living with dementia, including types of dementia, legal issues, benefits and emotional issues. Topics include: the nature and effects of dementia; communication strategies; and availability of services in the South & West area. Please contact office for details of Carer Information Programmes.

• Carer Support Group CastledergOur Support Group meets once a month and it gives people an oppurtunity to share their experiences, concerns and problems in an understanding and confidential setting. We meet from 7:00pm - 9:00pm in Derg Valley Care on the 4th Wednesday of each month.

• Carer Support Group OmaghOur Support Group meets once a month and it gives people an opportunity to share their experiences, concerns and problems in an understanding and confidential setting. We meet from 7:00pm - 9:00pm in Meadowbank Residential Home on the 4th Monday of each month.

• Dementia Support ServiceOur Outreach Service offers information, and emotional support to people with dementia and their carers through direct contact visits in or beyond the family home.



• Information & SignpostingProviding information for anyone with any concern about dementia by providing a mix of information packs, leaflets and other publications, telephone information, loan libraries and meetings.

• Omagh Dementia caféCafé style supported social get-togethers, providing a combination of information, knowledge and support within a structured and understanding environment in the Strule Arts Centre every Thursday from 11am - 2pm.

• Outings & Day TripsSpecific events for people with dementia and carers.



Services in Fermanagh

Alzheimer’s SocietyCommunity Services BuildingColeshill House, 2 Coleshill RoadEnniskillenCo FermanaghBT74 7HG


Services offered• Belmore Court Carer’s Support GroupCarer’s Support Group meet each month in the Aisling Centre, Darling Street, Enniskillen. Meetings are held at 2.00p.m and 7.30 p.m. Please contact the office to confirm date of next meeting.

• Belmore Court Carer’s Support Group (evening)Carer’s Support Group meets each month in the Aisling Centre, Darling Street, Enniskillen. Meetings are held at 2.00 p.m and 7.30 p.m. Please contact the office to confirm date of next meeting.

• Belmore Court Dementia CaféThe dementia cafe provides an opportunity for people with dementia and their companions to meet and socialise with others in the same situation. The group meets one afternoon per month - details are available from the Dementia Support Manager at 02866 344073.

• Carer Information ProgrammeThe carer information programme provides the opportunity to increase knowledge and understanding of dementia. The programme runs at least once a year and consists of six weekly sessions covering a variety of topics. These can include sessions on communication, challenging behaviour, legal and financial issues etc. The branch also run a series of one day sessions throughout the year for rural areas.

• Castle Park Carer’s Support GroupCarer’s Support Group meet on 2nd Tuesday of month in the Castle Park Centre, Lisnaskea. Pleases contact our office to confirm date of next meeting.



• Day Trips / OutingsSpecific events for people with dementia and carers.

• Dementia Support ServiceOur Outreach Service offers information, and emotional support to people with dementia and their carers through direct contact visits in or beyond the family home.

• Information & SignpostingProviding information for anyone with any concern about dementia by providing a mix of information packs, leaflets and other publications, telephone information, loan libraries and meetings



Recommended Reading

Below is a list of the Alzheimer’s Society’s most popular publications:

Caring for the person with dementia is a practical, hands-on guide to coping with dementia. It deals with topics ranging from the impact of caring, to understanding the person and getting support. A new edition will be available by mid-September. To order, send a cheque for £7 to the Alzheimer’s Society mailing address, with your name and address.

The Alzheimer’s Society’s book of activities The use of activities can significantly improve the quality of people’s lives. This 160-page book contains tried and tested ideas and explains how to set up an activities programme. It costs £24.99 inc p&p. To order a copy, call Netpack on 017 3636 0036.

I’m told I have dementia (605) is a free publication written for people with dementia. It contains sections on finding support, driving, living wills, and telling other people about dementia.The Memory Handbook (1540) is a free practical guide to living with memory problems. It concentrates on what people with dementia can do to manage their memory loss.

To order any of the Society’s free publications, call 017 5382 4007.

Dancing with dementia has been written by Christine Bryden, who has dementia. It is a story about living positively with dementia. The publisher is Jessica Kingsley, and ISBN number is 1843103325.

Dementia - Alzheimer’s and other Dementias will help readers how to recognise the symptoms of dementia, and how they can be treated. It is published by Class Publishing. The ISBN number is 1859590756.



Factsheets

Alzheimer’s Society factsheets cover a wide range of dementia-related topics.Factsheets may be obtained free of charge at www.alzheimers.org.uk/factsheets

Causes of dementia, progression and drug treatments• What is dementia? (400)• What is Alzheimer’s disease? (401)• What is vascular dementia? (402)• What is dementia with Lewy bodies (DLB)? (403)• What is fronto-temporal dementia (including Pick’s disease)? (404)• Genetics and dementia (405)• Aluminium and Alzheimer’s disease (406)• Drug treatments for Alzheimer’s disease (407)• Dementia: drugs used to relieve depression and behavioural symptoms (408)• The later stages of dementia (417)• What is Creutzfeldt-Jakob disease (CJD)? (427)• Learning disabilities and dementia (430)• Complementary and alternative medicine and dementia (434)• What is Korsakoff’s syndrome? (438)• Younger people with dementia (440)• Rarer causes of dementia (442)• Depression (444)• What is HIV-related cognitive impairment? (446)• Am I at risk of developing dementia? (450)• The brain and behaviour (456)• The progression of dementia (458)• Mild cognitive impairment (470)• What is posterior cortical atrophy (PCA)? (479)• Hallucinations and delusions (520)

Emotional and practical support• Volunteering for research into dementia (409)• Brain tissue donations (410)• Voluntary organisations (412)• Adaptations, improvements and repairs to the home (428)• Equipment to help with disability (429)• The Mini Mental State Examination (MMSE) (436)• Assistive technology (437)• Driving and dementia (439)• Counselling: how can it help? (445)• Dental care and dementia (448)• Festivals, holidays and celebrations (455)



• Respite care (462)• After a diagnosis (471)• Travelling and going on holiday (474)• Frequently asked legal questions (475)• Selecting a care home (476) • Understanding and respecting lesbian and gay people (480)• Choosing residential accommodation for lesbian and gay people (482) • Communicating (500) • Moving and walking about (501)• Coping with incontinence (502)• Safety in the home (503)• Washing and bathing (504)• Keeping active and staying involved (505)• Grief and bereavement (507)• Dealing with aggressive behaviour (509)• Dressing (510)• Eating (511)• Pressure sores (512)• Sex and dementia (514)• Dementia and children or young people (515)• Dealing with guilt (516)• Living alone (517)• What if I have dementia? (518)• Maintaining everyday skills (521)• Staying healthy (522)• Carers: looking after yourself (523)• Understanding and respecting the person with dementia (524)• Unusual behaviour (525)• Coping with memory loss (526)

Health and social care• Community care assessment (418)• How the GP can help (425)• Diagnosis and assessment (426)• What standards of care can people expect from a care home? (451)• Assessments for NHS-funded nursing care (452)• Hospital discharge (453)• How health and social care professionals can help (454)• Choices in care (465)• Care on a hospital ward (477)



Legal and financial information• Benefits (413)• Council tax (414)• Benefits rates and income/savings thresholds (431)• The Mental Health Act 2007 and guardianship (459)• Mental Capacity Act 2005 (460)• Advance decision (463)• Financial and legal affairs (467)• Paying care home fees (468)• When does the local authority pay for care? (469)• Enduring power of attorney and lasting powers of attorney (472)• Direct payments (473) • Legal issues for lesbian and gay people (481) • New! Deprivation of Liberty Safeguards (483)

*Up to six sheets are free; further copies cost 20p each.



A Guide to the Complaints Proceedure

The Western Health & Social Care Trust is committed to providing high quality services. However, if you have a complaint about our services, tell us about it. We need to know if our performance is not up to standard or if you are unhappy, so that we can learn and improve the quality of services we provide. We will take your complaint seriously and treat it in confidence.

Making a complaint does not affect your rights and will not result in the loss of any service you have been assessed as requiring.

Who can Complain?Anyone who uses our services can complain. You can also complain on someone else’s behalf, although we may need their consent.

How to ComplainYou can make your complaint in the way that best suits you. This can be face to face, on the telephone or in a letter. You should provide us with details of:

• how to contact you;

• who or what you are complaining about;

• where and when the event that caused your complaint happened;

• where possible, what action you would like us to take.

You should try to complain as soon a possible after the action giving rise to it, normally within 6 months of the event.

If you were not aware at that time there was cause for complaint, you can still complain within 6 months of becoming aware there was a cause for complaint but normally no longer than 12 months after the cause of the complaint.

Initially, you can speak to any of the staff who are dealing with your treatment or care and they will try to resolve your concerns straight away. If they can’t, they will tell you what to do next.



We also have a Complaints manager and Complaints Officers who can help you. Contact details are as follows:

Complaints DepartmentTrust HeadquartersMDEC BuildingAltnagelvin Area Hospital, Londonderry,BT47 6SB

Tel No: 02871345171 Ext: 214130/214121/214122/214142/214194Or Direct Dial No: 02871 611226Email: [email protected]

If at any stage you feel you would like to discuss your concerns in person, the Complaints Team would be happy to meet with you. Do bring along a friend or relative if you would like their support.

Help with Making a ComplaintOur Complaints Team can provide you with more information on how to make a complaint.

Alternatively, the Patient and Client Council can provided free and confidential advice, information and help to make a complaint. This might include help with writing letters, making telephone calls, and supporting you at any meetings you might need to attend. You can get more information on the services provided by the Patient and Client Council at: www.patientclientcouncil.hscni.net or by phoning Freephone 0800 917 0222.

Specialist advocacy services may also be available to help you through the process of complaining. Our Complaints Manager or the Patient and Client Council will be able to provide you with further details of this support.

What will Happen Next?Your complaint will be acknowledged within 2 working days of receipt. We will aim to respond to your complaint in full within 20 working days. Some complaints take longer to resolve than others. We will tell you if it becomes clear that we are unable to respond within these timescales.

What to do if you are Dissatisfied With the Respones GivenIf you are not satisfied with the response you receive, you can contact the Complaints Manager again and we will do our best to resolve your concerns.



If you remain unhappy, you can refer your complaint to the Northern Ireland Commissioner for Complaints (the Ombudsman). The Ombudsman will consider your complaint to determine whether it warrants further investigation by him. Further information on the services provided by the Ombudsman is available by contacting:

The OmbudsmanFreepost BEL 1478BELFASTBT1 6BRFreephone: 0800 34 34 24Email: [email protected]: www.ni-ombudsman.otg.uk

Complaints About Regulated Establishments, e.g. Nursing Or Residential Homes.If your complaint relates to a placement we have made in an establishment such as a nursing or residential home, you can complain to the provider of care or, if you prefer, you can raise your concerns with us. If you are not happy with the response you receive, you can refer your complaint to the Ombudsman.

The Regulation and Quality Improvement Authority (RQIA) is the independent Health and Social care regulatory body for Northern Ireland, who will monitor how complaints about regulated services are handled. Further information about services provided by RQIA is available at Tel: 02890 517500 or web: www.rqia.org.uk

We value all your views, so if you have:

Comments and ConcernsWe will consider all your comments and suggestions, share them with relevant staff and make changes, if possible.

ComplimentsWe will use your compliments to highlight good practice and will pass them on to the relevant department or person.

This information is available in large print and other formats upon request.

More information on the complaints procedure is also available at:www.dhsspsni.gov.uk/hsccomplaints.htm





Comments

You have received this booklet because you have been assessed by the Memory Assessment Clinic.

We value your comments on our service and would value any suggestions you have as to how we might improve our service.

Was the waiting time for an appointment satisfactory?

Were you satisfied with the assessment you received?

Were you or your relative given the opportunity to ask any questions?

Was the information given to you following assessment satisfactory?

If you have any other comments about the service you received please comment below. All feedback will be treated as confidential and will help us to improve the service we offer to you.

All comment sheets should be removed from the booklet and returned the clinic that completed your assessment: Thank you for your time.

Memory Assessment Clinic Memory Assessment ClinicOak Villa, ColeshillGransha Park Coleshill HouseClooney Road EnniskillenDerry Co. FermanaghBT47 6WJ

Memory Assessment Clinic Holly VillaTyrone & Fermanagh HospitalDonaghanie RoadOmagh Co Tyrone







Memory Assessment Clinic • July 2012

Living With DementiaMemory Assessment Clinic • July 2012


Documents

Living With Dementia - Western Health and Social Care Trust