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 key issues to consider at this stage to help 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 still have the ability to make decisions for themselves. They may wish to prepare for a time when another person may need to help with their affairs. Considering future care options may also help to allay some fears.

Services and support

Accessing 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. If the department assesses a person as being in need of certain services, it has a duty to provide the services that fall within their eligibility criteria (locally set rules on what type of needs the local authority will meet). 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.

Local authorities also provide services for carers, who are entitled to a carers assessment to assess their needs regarding the care they provide. This applies whether or not the person with dementia is also being assessed but the assessments can be done at the same time.

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, Citizens Advice Bureau or Age UK group for details (see 'Useful organisations' for contact details).

Financial and legal affairs

The person with dementia should consider arranging 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. For more information, see Factsheet 467, Financial and legal affairs.

You may need to get advice from a solicitor when completing legal documents. Check that documents are completed correctly and are legally valid. Solicitors for the Elderly can help you to find solicitors in your area, see 'Useful organisations' for details. The Citizens Advice Bureau can also provide advice about legal matters.

Make sure that all important papers 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. This will mean that the bills are paid automatically from your bank account each month.

Benefits

It 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'.)

Lasting powers of attorney

A lasting power of attorney (LPA) allows an individual to give another person authority to make a decision on their behalf. There are two types of LPA and they are applied for separately. Health and welfare LPAs allow an attorney to make decisions about healthcare and welfare, including decisions about medical treatment. Property and affairs LPAs cover property and financial matters. It is important to note that decisions about care often relate both to financial matters and personal welfare - for example, when a person moves to a care home. LPAs must be registered with the Office of the Public Guardian before they can be used.

The introduction of LPAs strengthens the rights of people with dementia to make plans for their future, and gives them greater choice. It also introduces a degree of protection, as well as reassurance that their wishes will be followed as far as is possible.

Personal welfare LPAs can only be used once the person lacks mental capacity (the ability to make decisions for themselves), although a person can choose to hand over responsibility early for financial affairs while they still have capacity. It is important to inform the Office of the Public Guardian (OPG) if the person loses mental capacity and can no longer manage their affairs or make decisions about their care.

LPA has replaced enduring power of attorney (EPA), which only covered property and affairs, not personal welfare. Now that the Mental Capacity Act 2005 has come into force it is not possible to make an EPA, but the act does allow existing EPAs to continue to be valid.

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

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 Factsheet 467, Financial and legal affairs.

Advance decisions

People with dementia may wish to make an advance decision, so that they can have a say in their future care. 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.

Advance decisions replace advance directives made prior to the Mental Capacity Act 2005. If an individual has an advance directive, and has since lost capacity, it may still be valid and applicable under the Mental Health Act if it complies with the new conditions that the act introduced. Transitional provisions have been put in place to ensure that people who made advance directives that do not comply with the new conditions are not disadvantaged.

(For more information, see Factsheet 463, Advance decision.)

Health

Seeing the GP

If 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. Depression shares many symptoms with dementia so it can be difficult to identify in a person with dementia. See Factsheet 444, Depression, for more information.

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 medication

If 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 dementia

At 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 in some people. The drugs that may be used for mild-to-moderate stage Alzheimer's disease are known as acetylcholinesterase inhibitors.

Current guidance from the National Institute for Health and Clinical Excellence (NICE) recommends that an acetylcholinesterase inhibitor is routinely offered to someone with mild-to-moderate Alzheimer's disease. This differs from previous NICE guidance, which recommended these drugs only to people with moderate stage Alzheimer's.

For more information, see Factsheet 407, Drug treatments for Alzheimer's disease - or ask your GP.

NICE guidance states that people with dementia with Lewy bodies may be offered an acetylcholinesterase inhibitor if they find their non-cognitive symptoms are very distressing.

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. An acetylcholinesterase inhibitor is recommended only if the person has mixed dementia (ie vascular dementia with Alzheimer's disease).

Other check-ups

The 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.

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. As with all changes to a person's health that may affect their driving, they must inform the Driver and Vehicle Licensing Authority (DVLA) of their diagnosis. They should also inform their insurance company, or their insurance may become invalid.

The DVLA will ask for medical reports and possibly a driving assessment (this is not the same as a driving licence test) 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 and the booklet, Dementia and driving.

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 a range of sources, including:

• their human resources department
• ACAS (Advisory, Conciliation and Arbitration Service)
• a trade union
  
• the Citizens Advice Bureau 
• the disability employment adviser at the local job centre.

The employer may be able to make some reasonable adjustments to help the person continue to work. Reasonable adjustments could include, changing the way that something is done, changing physical features of the work environment, and providing extra equipment or someone to assist the person to meet their changing needs. The employer 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 or has not made reasonable adjustments to support them, they can seek advice from the Equality and Human Rights Commission helpline (details below). Under the Equality Act 2010, it unlawful for employers to discriminate against disabled people because of their disability.

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

Age UK

Tavis House
1-6 Tavistock Square
London WC1H 9NA
T 0800 169 8787 (general enquiries)
  0800 169 6565 (advice line)
E contact@ageuk.org.uk
W www.ageuk.org.uk

Provides advice and information for older people in England. Age UK has been formed by the merger of Age Concern and Help the Aged.

Alzheimer's Society

Devon House
58 St Katharine's Way
London E1W 1LB
T 020 7423 3500
   0300 222 11 22 (helpline)
E info@alzheimers.org.uk (general information)
helpline@alzheimers.org.uk (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.

Benefit Enquiry Line (BEL)

Red Rose House
Lancaster Road
Preston
Lancashire PR1 1HB
T 0800 882 200 (free helpline open 8.30am-6.30pm weekdays and 9.00am-1.00pm Saturdays)
   0800 243 544 (textphone)
E BEL-Customer-Services@dwp.gsi.gov.uk
W www.direct.gov.uk/disability-money

National, free telephone advice and information service on benefits for people with disabilities, their carers and representatives. Note that advisers can send out forms and give advice but they have no access to personal records.

Carers UK

20 Great Dover Street
London SE1 4LX
T 0808 808 7777 (free advice line, Wednesday and Thursday 10am-12pm and 2pm-4pm)
E info@ukcarers.org
W www.carersuk.org

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

Citizens Advice Bureau (CAB)

Various locations
W www.citizensadvice.org.uk
www.adviceguide.org.uk

Your local CAB can provide information and advice in confidence or point you in the right direction. To find your nearest CAB look in the phone book, ask at your local library or look on the citizens advice website (above). Opening times vary.

Counsel and Care

Twyman House
16 Bonny Street
London NW1 9PG
T 0845 300 7585 (advice line, weekdays 10am-4pm except Wednesdays 10am-1pm)
E advice@counselandcare.org.uk
W www.counselandcare.org.uk

Provides advice, information and financial support for older people, their families and carers.

Department for Work and Pensions

For details of your local office, go to www.dwp.gov.uk/localoffice
For details of various helplines, go to www.dwp.gov.uk/contact/contact_atoz.asp
T 08457 123456
E use the enquiry form on the website (see below)
W www.dwp.gov.uk

The government department responsible for employment and social security. Its website gives details of the various benefits and how to claim them, and has claim forms available to download.

Drivers Medical Group

Driver and Vehicle Licensing Agency (DVLA)
Swansea SA99 1TU
T 0300 790 6806 (Monday to Thursday 8am-5.30pm, Friday and Saturday 8am-1pm)
E eftd@dvla.gsi.gov.uk
W www.dvla.gov.uk/medical

The section of the DVLA concerned with drivers with a medical condition that may affect their fitness to drive.

Equality and Human Rights Commission Helpline

Freepost RRLL-GHUX-CTRX
Arndale House
Arndale Centre
Manchester M4 3EQ
T 0845 604 6610 - England
  0845 604 8810 - Wales
   (helplines open 8am-6pm weekdays)
E info@equalityhumanrights.com
W www.equalityhumanrights.com

A commission set up in October 2007 to replace the Commission for Racial Equality, Disability Rights Commission and Equal Opportunities Commission. Provides a helpline and takes legal action on behalf of some individuals whose legal rights have not been upheld.

Office of the Public Guardian (OPG)

PO Box 15118
Birmingham B16 6GX
T 0300 456 0300
E customerservices@publicguardian.gsi.gov.uk
W www.publicguardian.gov.uk

Supports and promotes decision making for those who lack capacity or would like to plan for their future, within the framework of the Mental Capacity Act 2005. Provides free booklets on enduring power of attorney and receivership. The court of protection is at the same address.

Solicitors for the Elderly

Sue Carraturo
Solicitors for the Elderly Ltd
Room 17, Conbar House
Mead Lane
Hertford SG13 7AP
T 0844 567 6173
E admin@solicitorsfortheelderly.com
W www.solicitorsfortheelderly.com

Independent, national organisation of lawyers who provide legal advice to older people. They can also help you to find a solicitor.

Factsheet 471

Last updated: April 2012
Last reviewed: November 2010

Reviewed by: Jack Gillis, Helpline Co-ordinator, Alex Clay, Knowledge Net Project Officer and Luke Warren, Information Officer (Legal and Welfare Rights), Alzheimer's Society