Alzheimer's Society

Once dementia has been diagnosed it is important to consider what to do next. This information sheet suggests steps that you can take at this stage to make it easier for everyone to manage.

A person who has been diagnosed with dementia 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 and now is a good time to find out about and take advantage of it.

Services and support

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

A person with dementia will need support. 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. An assessment can be arranged by contacting the local authority social services department. The address is in the phone book. For more details see the Alzheimer's Society's information sheet 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
• Respite care and residential and nursing 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.

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 Society branch, citizens advice bureau or Age Concern group for details.

Financial and legal affairs

The person with dementia should 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.

Benefits

It is important to check that both the person with dementia and the carer claim all the benefits to which they are entitled. The Alzheimer's Society information sheet Welfare benefits gives details about benefits and how to claim them. Alternatively, check with:

• The government website at http://www.dwp.gov.uk/
• The benefits enquiry line (0800 88 22 00)
• Your local department for work and pensions (previously the benefits agency)
• Your local citizens advice bureau or local advice agency - their details are in the phone book.

Check, in particular:

• Whether the person with dementia is eligible for disability living allowance or attendance allowance
• Whether the carer is eligible for invalid care allowance.

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

Enduring power of attorney (EPA)

Anyone with dementia who owns property or investments, or has an income other than benefits, should consider making an enduring power of attorney. It is not too late to do this if the person with dementia can show that they are aware of what is involved.

An EPA is a legal process in which the person making the EPA, known as the 'donor', gives the legal right to one or more people, known as 'attorneys', to manage their financial affairs and property. It can come into effect immediately, if desired, and has the same status as an ordinary power of attorney. However, unlike an ordinary power of attorney, which becomes invalid if the donor becomes mentally incapable, an enduring power of attorney remains effective should this occur, providing it is properly registered.

If the person with dementia has not made an EPA, a receiver may have to be appointed to manage their affairs if they become mentally incapable. This can be complicated and costly.

For more information see the Alzheimer's Society information sheet Enduring power of attorney and receivership. The public guardianship office provides free booklets on enduring power of attorney and receivership.

Making a will

A 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 the Alzheimer's Society information sheet Financial and legal tips.

Setting up a trust

If 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 the Alzheimer's Society information sheet Financial and legal tips.

Health

Seeing the GP

A person with dementia should see their GP if they feel unwell or if there are any concerns about their health. Even minor complaints can make a difference to a person's well-being and ability to cope.

A person should also see the GP if there are any sudden and inexplicable changes in their behaviour. Many conditions, such as infected leg ulcers, constipation or chest infections, can cause additional confusion and distress that usually diminish once treated.

Depression is very common in early-stage dementia and the GP should be consulted if this is suspected. If the condition persists, the GP may consider treatment. See the Alzheimer's Society information sheet Depression.

The GP can refer people to other health professionals, such as community nurses and specialists. For more details see the Alzheimer's Society information sheet How the GP can help.

Existing medication

If the person with dementia is already on medication, they should check with their GP whether it is essential. Some medication has sideeffects that can cause additional confusion. The same applies for over-the-counter drugs.

Drugs for dementia

At present there are no treatments that can reverse the progress of dementia once it has developed. However, there are some drugs that may alleviate some of the symptoms of Alzheimer's disease for a limited period of time, although they don't work for everyone. Ask your GP for further information.

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-ups

The person with dementia should have regular sight, hearing and dental check-ups.

• Problems with sight can exacerbate confusion
• Hearing difficulties can increase feelings of isolation
• Problems with teeth, gums or dentures can result in discomfort and distress. For more details see the Alzheimer's Society advice sheet Staying healthy.

Driving

A 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 (DVLA) of their diagnosis
• They must inform their insurance company of their diagnosis, or their insurance may become invalid.

The DVLA 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, usually only valid for a year (after which time the situation will be reviewed), or revoke the licence.

For more information see the Alzheimer's Society advice sheet Driving and dementia.

Working

If 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:

• Their human resources department or trade union
• A local citizens advice bureau
• A disability employment adviser at their local job centre.

Their employer may be able to adjust their job to meet their changing needs. Financial assistance may be available 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.

If the person feels that they have been treated unfairly by their employer, they can seek advice from the disability rights commission helpline (details below).

Helpful organisations

Age Concern England

Freepost SWB 30375
Ashburton
Devon
TQ13 7ZZ

Freephone information line: 0800 00 99 66
Website: http://www.ace.org.uk/

The freephone information line is available from 7am to 7pm every day and can provide advice and information on a wide range of topics, including benefits and community care. Fact sheets are available on the website and from the above address. Look in the phone book under 'Age Concern' for your nearest local group.

Alzheimer's Society

Gordon House
10 Greencoat Place
London
SW1P 1PH

Helpline: 0845 300 0336
Website: http://www.alzheimers.org.uk/

The Alzheimer's helpline is available from 8.30am to 6.30pm weekdays and can give advice and information on many aspects of dementia and caring for a person with dementia. The Society publishes information and advice sheets, which are available on its website and from the above address.

Benefits enquiry line

Telephone: 0800 88 22 00

This free helpline is for people with disabilities or sickness and their carers. It is available from 8.30am to 6.30pm weekdays and from 9am to 1pm on Saturdays. People who are deaf, hard of hearing or speech impaired and who use a textphone can call the benefits enquiry line free on 0800 24 33 55. Advisers can send out forms and give advice but they have no access to personal records.

Carers UK

20/25 Glasshouse Yard
London EC1A 4JT

Carers Line: 0808 808 7777
Email: info@ukcarers.org
Website: http://www.carersonline.org.uk/

Provides information, advice and support for carers and campaigns on their behalf. Leaflets and fact sheets are available free to carers. Carers Line is available from 10am to 12pm and 2pm to 4pm on weekdays.

Citizens advice bureaux (CAB)

To find details of your nearest CAB look in the phone book, ask at your local library or consult the CAB website at http://www.nacab.org.uk/

The website gives details of opening times and specialist services.

Your local CAB is often the best starting point for advice on a range of topics, from benefits and housing to debts and employment. The service is free, confidential and independent. Most CABs have a solicitor and some have an accountant available at certain times to give free initial advice.

Counsel and Care

16 Bonny Street
London NW1 9PG

Advice line: 0845 300 7585
Email: advice@counselandcare.org.uk
Website: http://www.counselandcare.org.uk/

Provides free and confidential advice to older people, their carers and professionals. The advice line is available from 10am to 12.30pm and from 2pm to 4pm on weekdays. Helpful fact sheets on topics ranging from benefits to care homes are also available.

Disability Rights Commission Helpline

Freepost
Mid 02164
Stratford-upon-Avon CV37 9BR

Helpline: 08457 622 633
Email: enquiry@drc-gb.org
Website: http://www.drc-gb.org/

The helpline is available from 8am to 8pm weekdays and all calls are charged at local rate.

DVLA Drivers' Medical Unit

Longview Road
Swansea SA99 1TU

Telephone: 0870 600 0301
Website: http://www.dvla.gov.uk/

Help the Aged

207-221 Pentonville Road
London N1 9UZ

Telephone: 020 7278 1114
Seniorline: freephone 0808 800 6565
Email: info@helptheaged.org.uk
Website: http://www.helptheaged.org.uk/

Gives advice by letter or telephone on topics affecting older people, such as benefits, community care and home safety. They can also put people in touch with local services, voluntary organisations and self-help groups. Seniorline is available on weekdays from 9am to 4pm.

Office of the Public Guardian

Archway Tower
2 Junction Road
London N19 5SZ

Customer services telephone: 0845 330 2900
Email: customerservices@publicguardian.gsi.gov.uk
Website: http://www.publicguardian.gov.uk/

Customer services can send free booklets on enduring power of attorney and receivership. Their telephone line is available from 9am to 5pm on weekdays; all calls are charged at local rate.

Information sheet 471

Last updated: March 2003
Last reviewed: March 2003