dementia

by Sally Burningham

A total of about 700,000 people in the UK are affected by dementia. Of these, the great majority are older people, although around 18,500 people are under 65.

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When someone has dementia their brain cells become damaged or die. This means that they may find it difficult to remember what has happened recently, understand what is being said or cope with ordinary, everyday activities, for example. There may also be changes in their behaviour and personality. The effects may be slight at first but will generally become more marked over time.

There is at present no cure for dementia, although a great deal of research is being carried out. However, accurate information and the right kind of support can make it easier for people with dementia and their friends and relatives to manage and make choices about the way they lead their lives.

A recent study shows that many people who have dementia would prefer to be told their diagnosis.

getting a diagnosis

The likelihood of developing dementia increases as people get older. Although it is estimated that fewer than 0.1% of people under the age of 65 have dementia, as many as 20% over the age of 80 are affected in the UK.

Mild memory loss is normal in many older people, but if you have an older friend or relative who is becoming increasingly forgetful or confused you may be worried about the possibility of dementia. Try to persuade them to see their GP as soon as possible.

There may be other treatable conditions that are causing their symptoms, such as heart or thyroid problems, or there may be no great cause for concern. On the other hand, if they do have dementia, the sooner it is diagnosed the better. This gives everyone time to plan for the future and make sure appropriate support is available when it is needed.

The diagnosis may be carried out by the GP or the person may be referred to a specialist for a more detailed examination and further tests. Tests may include assessing the person's memory or concentration, for example, or investigations such as a brain scan.

what causes dementia?

Dementia is caused by a number of different diseases and conditions that affect the brain. Among these some, like Alzheimer's disease, are more common and some are quite rare. Sometimes a person may be affected by a mixture of diseases and conditions such as Alzheimer's disease and vascular dementia.

Many people worry that they may have inherited a gene for dementia. However, except in a very small number of cases, there is no evidence to suggest a direct genetic cause for dementia.

Alzheimer's disease

This is the most common cause of dementia. Estimates vary, but it is thought that around two thirds of people with dementia in the UK have Alzheimer's disease. During the course of the disease structural and chemical changes take place in the brain and brain cells die. As the disease progresses more parts of the brain will become damaged and symptoms will become more severe.

vascular disease

Vascular dementia affects around a quarter of people with dementia in the UK. The vascular system carries blood, which contains oxygen, to the brain. If a blockage or disease in the vascular system prevents oxygen from reaching the brain, brain cells may die. In one type of vascular dementia, known as multi-infarct dementia, a series of small blood clots, occurring at intervals, causes a build up of damage to the brain.

dementia with Lewy bodies (DLB)

In this type of dementia, minute spherical structures, called Lewy bodies, are found inside dead and damaged nerve cells in the brain. Half or more of those affected by DLB also develop symptoms of Parkinson's disease such as slowness of movement, stiffness and tremor.

fronto-temporal dementia (including Pick's disease)

This is a more unusual form of dementia that is more likely to affect people under the age of 65 years. Damage occurs initially in the front parts of the brain, which are the areas responsible for our behaviour, our emotional responses and our language skills.

rarer causes of dementia

There are many other rarer causes of dementia including Creutzfeldt-Jacob disease (CJD), progressive supranuclear palsy and Binswanger's disease. People with certain other diseases or conditions such as Parkinson's disease and Down's syndrome may also develop dementia.

what are the symptoms?

It is important to remember that everyone with dementia is different and no two people will experience exactly the same symptoms or behave in quite the same way. This means that no one will be able to tell you in advance exactly what to expect or just how quickly the illness will progress.

Some symptoms are more characteristic of a certain type of dementia. For example people with vascular dementia are more likely to have insight into their condition in the early stages than people with Alzheimer's disease. But there are no hard and fast rules and even people with the same type of dementia will experience different symptoms or react in different ways.

Most forms of dementia start gradually.

early signs

Early signs you may notice in a friend or relative might include:

• forgetfulness, particularly about the recent past
• confusion about what is going on around them or has been planned
• loss of interest in other people or activities
• behaving in a way that seems unlike themselves
• seeming more anxious, agitated or depressed than usual.

At the time it is easy to attribute such signs to other causes, such as a worry or bereavement, and it is only on looking back that it becomes clear that they were probably the start of dementia.

greater changes

As dementia progresses, changes become more marked and you will find that your friend or relative needs more support in managing everyday living. Symptoms may include:

• gradually worsening memory, particularly short-term memory
• being muddled about the time, sometimes confusing night with day
• difficulties in understanding what is being said or what is going on around them
• problems in making themselves understood and making their wishes known
• difficulties in looking after themselves and carrying out everyday household tasks
• being confused about where they are or wandering and getting lost
• becoming easily upset or angry or becoming very clinging and following you everywhere.

later stages

Eventually, the person with dementia will become almost totally dependent on others for care. They may:

• fail to recognise even close family members and familiar objects
• become increasingly frail and eventually confined to a wheelchair or bed
• lose speech, although they may repeat a few words or cry out from time to time
• become restless and agitated as though searching for something in their past.

Although they may seem to have little understanding of what is going on around them, they may still respond to a calm, soothing voice or signs of affection, or may enjoy stroking a pet, cuddling a toy or listening to music.

treatment

At present there are no treatments that can reverse the dementia once it has occurred. However

• drugs such as Aricept have been developed that may alleviate some of the symptoms of Alzheimer's disease for a limited period of time. Ask your GP about these.
• people with vascular dementia will be treated for their underlying vascular disease to try and prevent it from worsening. This may involve medication such as aspirin and changes in lifestyle to control high blood pressure, for example.

services

It is never too soon to find out about what services are available. Help at the right time can make all the difference to the life of the person with dementia and to those looking after them. However services do vary very much from area to area.

Local authority social services departments are responsible for arranging services, often known as community care services. These may include:

• home care and sitting services
• equipment and adaptations
• day care
• respite care and residential and nursing care.

If someone with dementia needs support in order to cope, their local authority has a duty to carry out an assessment to find out what their needs are and whether there are appropriate services that can help to meet these needs. An assessment can be arranged through your doctor or another appropriate professional or you can contact social services direct. The address will be in your local phone book under the name of your local authority.

Remember, if you are a carer you are also entitled to a local authority assessment of your needs in relation to caring. Local authorities can provide carers with services in their own right.

Some services such as community nursing are arranged through the health service. You can ask the GP or hospital consultant for details.

Local voluntary organisations may provide services such as information, helplines, support groups, lunch clubs or sitting schemes for example. Ask your local Alzheimer Society group, citizens advice bureau (the address will be in your phone book) or Age Concern group (for details see help and info).

tips for caring

If you are caring for someone with dementia you will probably need specific advice on how to cope with difficulties such as wandering, aggression or incontinence, should they occur. The Alzheimer Society publishes some helpful advice sheets on a range of topics or you can phone their helpline for advice (see help and info). However here are some general suggestions from carers themselves that may help to improve the quality of life of people with dementia and those caring for them.

• Look for activities that the person can still manage and enjoy.
• Praise them for any achievements. Never scold or make them feel they have failed.
• Encourage the person to talk about the past.
• Find ways to aid memory, such as putting things in the same place.
• Do things with the person rather than for them and help them to remain as independent as they can.
• Speak in short, simple sentences and use calm movements and a reassuring tone.
• Make sure you have some time to relax and someone you can talk to about your own feelings and any problems that arise.

help and info

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To find out more about caring for someone with dementia check out our feature my husband has dementia.

organisations

Age Concern England
1268 London Road
London SW16 4ER
Tel: 020 8765 7200
Info Line: 0800 00 99 66 (every day 7am-7pm)
Website: www.ageconcern.org.uk
Aims to improve the quality of life of older people. Provides practical information and advice to older people and their families and factsheets on a range of issues that affect older people in the UK.

Age Concern Cymru (Wales)
Tel: 029 2043 1555
E-mail: enquiries@accyrnu.org.uk
Website: www.accymru.org.uk
Provides support, care and companionship to make the lives of older people in Wales better. The website is available in both English and Welsh.

Age Concern Northern Ireland
3 Lower Crescent
Belfast BT7 1NR
Tel: 028 9024 5729
Advice line: 02890 325 055 (Mon-Thurs 9.30am-1pm)
E-mail: info@ageconcernni.org
Website: www.ageconcernni.org

Age Concern Scotland
113 Rose Street
Edinburgh EH2 3DT
Tel: 0131 220 3345
Info Line: 0800 00 99 66 (every day 7am-7pm)
E-mail: enquiries@acscot.org.uk
Website: www.ageconcernscotland.org.uk

Alzheimer Scotland & Action on Dementia
22 Drumsheugh Gardens
Edinburgh EH3 7RN
Helpline: 0808 808 3000 (24 hours)
E-mail: alzheimer@alzscot.org
Website: www.alzscot.org
Scotland's leading dementia charity, representing the concerns of people with dementia and their carers and families. Runs services throughout Scotland providing information and advice; day, evening and weekend care; home support; befriending; and carer support. Publishes leaflets, books and reports on all aspects of dementia and provides education and training for carers.

Alzheimer's Society
Gordon House
10 Greencoat Place
London SW1P 1PH
Helpline: 0845 3000 336 (Mon-Fri 8.30am-6.30pm)
E-mail: enquiries@alzheimers.org.uk
Website: www.alzheimers.org.uk
The leading care and research charity for people with dementia and their carers in England, Wales and Northern Ireland. It provides information and education, support for carers, and quality day and home care. It funds medical and scientific research, and campaigns for improved health and social services, and greater public understanding of dementia.

Benefit Enquiry Line (BEL)
Tel: 0800 88 22 00 (Mon-Fri 9am-5pm)
Textphone: 0800 24 33 55
Free telephone advice and information service for people in England, Wales and Scotland with disabilities, their carers and representatives. Can give general advice on social security benefits and help with filling in forms.

Benefit Enquiry Line (BEL) (in Northern Ireland)
Tel: 0800 220674 (Mon-Fri 9am-5pm)
Textphone: 0800 24 37 87
Website: www.ssani.gov.uk/phone_services/bel.htm
Recorded answerphone call-back service outside office hours.

for dementia
6 Camden High Street
London NW1 OJH
Tel: 0207 874 7210
Email: info@fordementia.org.uk
Website: www.fordementia.org.uk
The mission of 'for dementia' is to improve the quality of life for people affected by dementia. They run training courses and a carers' network for carers of people with dementia.

Enquiries about Enduring Power of Attorney:

Public Guardianship Office (PGO)
Customer Service Unit
Archway Tower
2 Junction Road
London N19 5SZ
Customer Service Helpline: 0845 330 2900 (Mon-Fri 9am-5pm)
EPA Helpline (for professionals): 0845 330 2963 (Mon-Fri 9am-5pm)
E-mail: custserv@guardianship.gov.uk
Website: www.guardianship.gov.uk
Launched in April 2001, after taking over the Public Trust Office. Can provide information about an Enduring Power of Attorney.

In Scotland:
Office of the Public Guardian
Hadrian House
Callendar Business Park
Falkirk FK1 1XR
Tel: 01324 678 300 (Mon-Fri 9am-5pm)
Website: www.publicguardian-scotland.gov.uk
E-mail: opg@scotcourts.gov.uk
In Scotland the English equivalent of an EPA is a Continuing or Welfare Power of Attorney. The Office of the Public Guardian can give general information and advice regarding any adult who is mentally incapable of managing their own affairs. It can refer people to appropriate sources of information and can advise on legislation in Scotland (which is currently going through changes). It does not give individual legal advice. Website has useful links.

In Northern Ireland:
Speak to your local CAB, or a solicitor in the first instance.

websites

Caring Decisions
www.caringmatters.dial.pipex.com
Comprehensive source of information and advice for patients, carers, and professionals to enable them to make informed decisions about long-term care. Has details on range of subjects such as care homes, home help, rights, and Enduring Power of Attorney, plus details of books and lots of links.

Caring for Someone with Dementia
www.alzheimers.org.uk/Caring_for_someone_with_dementia/index.htm
Information about coping with caring, dealing with unusual behaviour and maintaining health and quality of life.

National Association of Citizens Advice Bureaux (NACAB)
www.citizensadvice.org.uk
Offers free, confidential and independent advice on issues including debt, benefits, housing, legal matters, employment, and immigration. There are bureaux throughout the UK. Website contains information about NACAB, social policies, and details of local CABs.

reading

Alzheimer's at your Fingertips by Harry Cayton, Dr Nori Graham and Dr James Warner
(Class Publishing, 1997)
Deals with all aspects of dementia in a question and answer format. Offers helpful advice.
Get this book

Dementia Reconsidered: The Person Comes First by Tom Kitwood (Open University Press, 1997)
The unifying theme of this text is the personhood of men and women who have dementia. Each chapter provides a statement on a major topic related to dementia, such as the nature of "organic mental impairment", the experience of dementia, the agenda for care practice, and the culture of care.
Get this book

Introducing Dementia: The essential facts and issues of care by David Sutcliffe (Age Concern Books, 2001)
Explains the different types of dementia, the symptoms, diagnosis and treatment and offers practical advice.
Get this book

(November 2001, resources updated December 2004)