Alzheimer's Society

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 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. 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 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 affairs

The 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.

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 power of attorney

A lasting power of attorney (LPA) is a legal process created by the Mental Capacity Act 2005 that allows an individual to give another person authority to make a decision on their behalf. LPAs allow an attorney to make decisions about property and affairs (including financial matters) and personal welfare (including healthcare and medical treatment decisions).

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, although a person can choose to hand over responsibility early for financial affairs while they still have capacity. 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.

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 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 Factsheet 467, as above.

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. 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 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 of time − although they don't work for everyone. These drugs are known as acetylcholinesterase inhibitors.

Current guidance from the National Institute for Clinical Excellence and the Social Care Institute for Excellence recommends that acetylcholinesterase inhibitors are only used in people with moderately severe Alzheimer's disease and also states that people with dementia with Lewy bodies may be offered an acetylcholinesterase inhibitor if they find their non-cognitive symptoms are very distressing.

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-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.

Advance statements and advance decisions

An 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.

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.)

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 also inform their insurance company, 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 (which will need to be regularly reviewed), or will revoke the licence.

For more information see Factsheet 439, 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 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.

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

Useful organisations

Age Concern England

Freepost SWB 30375
Ashburton
Devon TQ13 7ZZ
T 0800 00 99 66 (free helpline every day 8am-7pm)
E use the enquiry form on the website (see below)
W http://www.ace.org.uk/

Provides advice and information for older people in England.

Age Concern Cymru

Ty John Pathy
13-14 Neptune Court
Vanguard Way
Cardiff CF24 5PJ
T 02920 413 555
E enquiries@accymru.org.uk
W http://www.accymru.org.uk/

Provides advice and information for older people in Wales.

Alzheimer's Society

Devon House
58 St Katharine's Way
London E1W 1JX

T 020 7423 3500
   0845 300 0336 (helpline open 8.30am-6.30pm weekdays)
E info@alzheimers.org.uk (general information)
   helpline@alzheimer.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 88 22 00 (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 carers' line, Wednesday and Thursday 10am-12pm and 2pm-4pm)
E info@ukcarers.org
W http://www.carersuk.org/

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

Citizens Advice Bureau (CAB)

Various locations

W http://www.citizensadvice.org.uk/
     http://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 http://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 http://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 1TUT 0870 600 0301 (Monday to Thursday 8am-8.30pm, Friday and Saturday 8am-5.30pm)
E eftd@dvla.gsi.gov.uk
W http://www.dvla.gov.uk/

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
   0845 604 5510 − Scotland (all helplines open 9am-5pm weekdays except Wednesdays 9am-8pm)
E info@equalityhumanrights.com
W http://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.

Help the Aged (England)

207-221 Pentonville Road
London N1 9UZ
T 020 7278 1114
   0808 800 6565 (seniorline freephone, weekdays 9am-4pm)
E info@helptheaged.org.uk
W http://www.helptheaged.org.uk/

Provides advice and reliable information for older people and their carers.

Help the Aged (Wales)

12 Cathedral Road
Cardiff CF11 9LJ
T 02920 346 550
E infocymru@helptheaged.org.uk
W http://www.helptheaged.org.uk/
 

Office of the Public Guardian (OPG)
Archway Tower
2 Junction Road
London N19 5SZ
T 0845 330 2900 (customer services, 9.00am-5.00pm weekdays)
E customerservices@publicguardian.gsi.gov.uk
W http://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.

Factsheet 471

Last updated: July 2008
Last reviewed: July 2008

Reviewed by: Louise Lakey, Senior Policy Officer, Alzheimer's Society