Voluntary organisations

If you have dementia or are caring for someone with dementia, there are a number of voluntary organisations that may be able to provide you with information, advice and practical help. This information sheet gives contact details for national voluntary organisations. Many of these have a network of local groups.

Local organisations

Voluntary organisations and groups vary from area to area. Your local social services department, citizens advice bureau, council for voluntary service or library should be able to give you a list of groups in your area.

Your place of worship, if you have one, or community organisation may also be able to help or point you in the right direction. You may need to be persistent to find the support you need. The Alzheimer's Society can also provide advice.

Alzheimer's Society

The Alzheimer's Society is the leading care and research charity for people with Alzheimer's disease and other forms of dementia, their families and carers. It is a national membership organisation working through over 250 local branches, support groups and carers' contacts. Members of the Society receive a monthly newsletter.

The Society has expertise in information and education and produces factsheets and other publications. It provides helplines and support for carers, runs quality day and home care, funds medical and scientific research and gives financial help to families in need. It campaigns for improved health and social services and greater public understanding of all aspects of dementia.

Contact the Alzheimer's Helpline on 0845 300 0336 (weekdays 8.30am to 6.30pm) for information, advice and contact details of local groups. Calls are charged at local rates. For all other enquiries contact:

Alzheimer's Society
Gordon House
10 Greencoat Place
London
SW1 1PH

Telephone: 020 7423 3500
Email: info@alzheimers.org.uk
Website: http://www.alzheimers.org.uk/

Age Concern

Age Concern is a charity providing services for older people in the UK through a federation of local groups run by volunteers and paid staff. Local activities vary, ranging from providing advice and information to running day centres, over 60s clubs, transport schemes and home sitting services.

There is no membership fee for local groups but there may be a charge for some activities to help cover costs. Look in the telephone book under Age Concern for your nearest group or contact your national Age Concern (see below).

For advice, information and factsheets on issues ranging from help with heating to choosing a residential home, you can telephone the Age Concern Information Line freephone on 0800 009966 (every day 8am to 7pm).

To contact your national Age Concern:

Age Concern England
Astral House
1268 London Road
London
SW16 4ER

Telephone: 020 8765 7200
Email: ace@ace.org.uk
Website: http://www.ageconcern.org.uk/

Age Concern Cymru (Wales)
13/14 Neptune Court
Cardiff
CF24 5PJ

Telephone: 029 2043 1555
Email: enquiries@accymru.org.uk
Website: http://www.accymru.org.uk/

Age Concern Northern Ireland
3 Lower Crescent
Belfast
BT7 1NR

Telephone: 028 9024 5729
Advice line: 028 9032 5055 (weekdays 9.30am-1pm)
Email: info@ageconcernni.org
Website: http://www.ageconcernni.org/

Age Concern Scotland
Causewayside House
160 Causewayside
Edinburgh
EH9 1PR

Telephone: 0845 833 0200
Email: enquiries@acscot.org.uk
Website: http://www.ageconcernscotland.org.uk/

Assist UK

This council co-ordinates a network of around 50 centres in the UK which offer free and impartial advice to disabled people and their carers on disability equipment.

Some centres also advise on clothing, footwear and continence management. You can telephone, email, visit or write to a centre. Free leaflets and factsheets are available at local centres. For further information contact:

Assist UK
Redbank House
4 St Chad's Street
Manchester
M8 8QA

Telephone: 0870 770 2866 (all calls charged at local rate)
Textphone: 0870 770 5813
Email: general.info@assist-uk.org
Website: http://www.assist-uk.org/

British Association for Counselling and Psychotherapy (BACP)

People with dementia and carers may feel they need counselling to help them cope with difficult and confusing feelings. The BACP covers the UK and can provide a list of counsellors and counselling and psychotherapy organisations in your area, with details of their specialisation, qualifications, training and fees. Details of free and low cost counselling, where this exists, are also given.

To find out what exists in your area you can write, enclosing a C5 stamped, self-addressed envelope, to:

British Association for Counselling
BACP House
35-37 Albert Street
Rugby
CV21 2SG

Telephone: 0870 443 5252 (weekdays 8.45am-5pm)
Email: bacp@bacp.co.uk
Website: http://www.bacp.co.uk/

Carers UK

Carers UK aims to help carers recognise their own needs. It provides information, advice and support for carers and campaigns on their behalf. Leaflets and factsheets are available free to carers.

There is a network of local branches and carers groups throughout the UK run mainly by carers and former carers. Local activities vary and may include support groups, a telephone helpline, social events and campaigning on relevant local issues.

For support and information on topics such as welfare benefits or assessments phone the free Carers Line on 0808 808 7777 (Wed and Thurs 10am-12pm and 2pm-4pm). To join Carers UK phone 020 7566 7602 or write to the address below. Members receive a free quarterly journal. For other information and details of local groups contact:

Carers UK
20/25 Glasshouse Yard
London
EC1A 4JT

Telephone: 020 7490 8818
Email: info@carersuk.org
Website: http://www.carersuk.org/

Charity Search

This national charity gives information on other charities that may be able to offer financial help to older people and people with disabilities.

Charity Search
25 Portview Road
Avonmouth
Bristol
BS11 9LD

Telephone: 011 7982 4060 (Mon-Thurs 9am-4pm)

Citizens advice bureaux (CABx)

Trained CAB advisers offer information and advice on topics such as benefits, housing, employment, debts, and family and personal problems. The service is free, independent and confidential.

The CAB can also give details of national and local organisations and services, including support groups. If you are experiencing particular problems because you are from a minority group, staff can advise or point you in the right direction. Most CABx have a solicitor and some have an accountant present at certain sessions to give free advice.

Local arrangements and opening times vary. You may need to make an appointment or you may have to walk in and wait your turn. Some CABx have telephone advice sessions but lines tend to be very busy and you may need to be persistent. A growing number of CABx provide an email service. You can also write a letter explaining your problem if you prefer.

For your nearest CAB look in the telephone book, ask at your local library or consult the website at http://www.citizensadvice.org.uk/. This website gives details such as opening times and specialist services. For basic advice and information, consult http://www.adviceguide.org.uk/.

Some neighbourhood advice centres can provide advice on financial or other problems or point you in the right direction. To find out what exists in your area ask at your library or the town hall.

CJD Support Network

This national network provides information, advice and support for people with CJD (Creutzfeldt- Jakob disease) and their families and professionals. It produces publications on CJD and can put families in touch with each other for mutual support.

Gillian Turner
CJD Support Network
PO Box 346
Market Drayton
Shropshire
TF9 4WN CJD

Helpline: 01630 673973
Email: support@cjdsupport.net
Website: http://www.cjdsupport.net/

Continence Foundation

If you want information or help with bladder or bowel problems for yourself or on behalf of someone else you can contact the Continence Foundation. A specialist nurse will answer your queries in confidence and they can also put you in touch with a local continence adviser. Helpful publications are available in leaflet form and on their website.

Continence Foundation
307 Hatton Square
16 Baldwins Gardens
London
EC1N 7RJ

National helpline: 0845 345 0165 (weekdays 9.30am- 1pm; calls charged at local rate)
Email: continence-help@dial.pipex.com
Website: http://www.continence-foundation.org.uk/

Councils for voluntary service

Independent local councils for voluntary service, which may go under different names such as voluntary action, or voluntary service councils, can give you information about voluntary organisations in your area and assist in setting up self-help and support groups.

To get in touch, look in your telephone directory, ask at your local library or contact your national organisation.

National Association for Voluntary Service and Community Action
Arundel Court
177 Arundel Street
Sheffield
S1 2NU

Telephone: 011 4278 6636
Email: navca@navca.org.uk
Website: http://www.navca.org.uk/

Wales Council for Voluntary Action
Baltic House
Mount Stuart Square
Cardiff
CF10 5FH

Telephone: 029 2043 1700
Email: enquiries@wcva.org.uk
Website: http://www.wcva.org.uk/

Northern Ireland Council for Voluntary Action
61 Duncairn Gardens
Belfast
BT15 2GB

Telephone: 028 9087 7777
Email: info@nicva.org
Website: http://www.nicva.org/

Counsel and Care

Counsel and Care provides free and confidential advice for people over 60 living in the UK and for relatives, friends and carers on subjects such as welfare benefits or help at home. The charity has a particular expertise in residential care.

You can phone the advice line on 0845 300 7585 (weekdays except Wednesdays10am-12pm and 2pm-4pm; all calls are charged at local rate). If you prefer you can write to:

Counsel and Care
Twyman House
16 Bonny Street
London
NW1 9PG

Email: advice@counselandcare.org.uk
Website: http://www.counselandcare.org.uk/

A wide range of factsheets is available. Single copies of factsheets are free but please send a large stamped self-addressed envelope. Factsheets can also be downloaded from the website.

Crossroads - Caring for Carers

This organisation runs a network of care attendant schemes in England and Wales. Its aim is to provide a flexible service to give respite care to carers so that they have time to themselves.

Trained and paid care support workers undertake activities that the carer normally carries out. The service is not restricted to office hours. Different schemes vary in the amount of time they can offer. There may be a charge, and there may also be a waiting list, so apply as soon as possible.

To find out whether there is a scheme in your area look in the telephone book or contact:

Crossroads - Caring for Carers
10 Regent Place
Rugby
Warwickshire
CV21 2PN

Telephone: 0845 450 0350
Website: http://www.crossroads.org.uk/

Cruse Bereavement Care

Cruse offers support to people of all ages, backgrounds and beliefs after the death of someone close.

There are Cruse branches throughout the UK, run mainly by volunteers, many of whom are trained counsellors. To find out if there is a branch near you, ask at your local library or citizens advice bureau or contact:

Cruse Bereavement Care
Cruse House
126 Sheen Road
Richmond
Surrey
TW9 1UR

Helpline: 0870 167 1677 (9.30am-5pm weekdays)
Email: info@cruse.org.uk
Website: http://www.crusebereavementcare.org.uk/

If you want to speak to a counsellor on the phone ring the above helpline.

If there is a branch near you they can arrange for you to meet someone. Help often consists of counselling on an individual or group basis over a period of time to enable people to come to terms with their loss, and there is opportunity for social contact with other people who have been bereaved. Helpful publications are also available.

Disabled Living Foundation (DLF)

The DLF is a UK charity providing expert and unbiased information and advice on disability equipment and ways of managing disability. Its aim is to enable people to remain as independent as possible and to have more choices in life.

You can phone the helpline with queries or problems on 0845 130 9177, weekdays 10am-4pm (all calls charged at the local rate) or email advice@dlf.org.uk.

You can also make an appointment to see a DLF adviser at the DLF Equipment Demonstration Centre at 380-384 Harrow Road, London W9 2HU between 10am-4pm, weekdays. For appointments please phone the helpline.

For general enquiries ring the main switchboard on 020 7289 6111, weekdays 9am-5pm. Information is also available on the website at http://www.dlf.org.uk/.

Elderly Accommodation Counsel (EAC)

This national charity provides detailed information on all types of accommodation for older people in the UK. They can also offer advice and guidance to help you choose the type of accommodation most suited to your needs. Contact:

Elderly Accommodation Counsel
3rd Floor
89 Embankment
London
SE1 7TP

Advice line: 020 7820 1343
Email: enquiries@eac.org.uk
Website: http://www.housingcare.org/

Help the Aged

This national charity aims to improve the quality of life of older people in the UK. It campaigns on behalf of older people, fundraises for research and services and provides a number of helpful schemes. It offers advice and information and produces a range of helpful leaflets.

Help the Aged
207-221 Pentonville Road
London
N1 9UZ

Telephone: 020 7278 1114
Email: info@helptheaged.org.uk
Website: http://www.helptheaged.org.uk/

Trained advice workers offer advice and information on a range of issues, including benefits, care at home and residential care, on the freephone SeniorLine on 0808 800 6565, weekdays 9am-4pm. Textphone 0800 269626. For Northern Ireland call 0808 808 7575.

Huntington's Disease Association

Many people who develop Huntington's disease also develop dementia. The association provides information, advice, support and useful publications for families affected by Huntington's disease in England and Wales. It can put you in touch with a regional adviser and your nearest branch or support group.

Huntington's Disease Association
Downstream Building
1 London Bridge
London
SE1 9BG

Telephone: 020 7022 1950 (weekdays 9am-4.30pm)
Email: info@hda.org.uk
Website: http://www.hda.org.uk/

For Northern Ireland contact:

Shane McKay
Huntington's Disease Association Northern Ireland
8 Glenbank Close
Belfast
BT17 0SN

Telephone: 02890 221950

Mind

Mind is a mental health charity that aims to improve the quality of life for people affected by mental health problems in England and Wales through means such as campaigning, developing services, providing advice and information and producing publications. National Mind is at:

Mind
15-19 Broadway
London
E15 4BQ

Telephone: 020 8519 2122
Email: contact@mind.org.uk
Website: http://www.mind.org.uk/

The Mind InfoLine, run by expert information officers and trained volunteers, can provide information on a range of topics including local services and mental health issues and can refer you to appropriate organisations. Telephone 0845 766 0163 (weekdays 9.15am-5.15pm; all calls charged at local rate).

A network of independent Mind groups are affliliated to national Mind. Activities vary but most groups provide information on local services, benefits and where to get help. Some organise day centres, drop-in centres or social clubs, for example.

You can find the address of your local Mind group from the national organisation or from the website.

For Northern Ireland contact:

Northern Ireland Association for Mental Health
80 University Street
Belfast
BT7 1HE

Telephone: 028 9032 8474
Email: edassistant@niamh.co.uk
Website: http://www.niamh.co.uk/

Parkinson's Disease Society of the UK

People with Parkinson's disease are at a higher risk of developing dementia. The Parkinson's Disease Society gives information, advice and support and has helpful publications. It can put you in touch with your nearest branch, offering information, support and social contact for people with Parkinson's and their families.

Parkinson's Disease Society
215 Vauxhall Bridge Road
London
SW1V 1EJ

Telephone: 020 7931 8080
Email: enquiries@parkinsons.org.uk
Website: http://www.parkinsons.org.uk/

A free helpline is open weekdays between 9.30am- 5.30pm on 0808 800 0303.

Patients Association

This national organisation campaigns for the rights of patients and for better health services. It produces helpful leaflets and booklets. You can contact them for advice if you are worried about any aspect of healthcare.

A helpline, staffed by trained volunteers, is available on 0845 608 4455 (weekdays 10am-4pm; calls charged at local rates). You can also write to:

Patients Association
PO Box 935
Harrow
Middlesex
HA1 3YJ

Helpline: 0845 608 4455
Email: mailbox@patients-association.com
Website: http://www.patients-association.com/

Pick's Disease Support Group

This support group has been established for carers and people with the following forms of dementia: dementia with Lewy bodies, fronto-temporal dementia (including frontal lobe degeneration and Pick's disease), alcohol-related dementia and corticobasal degeneration.

The group holds quarterly meetings in London, Liverpool and Nottingham for carers and produces a quarterly newsletter and information packs. For details of your local contact and further information contact:

Carol Jennings
8 Brooksby Close
Oadby
Leicester
LE2 5AB

Telephone: 0845 458 3208 (all calls charged at local rate)
Email: carol@pdsg.org.uk
Website: http://www.pdsg.org.uk/

Princess Royal Trust for Carers

This charity works through its network of independent carers centres in the UK.

Carers centres, staffed by professionals and volunteers, provide information, advice, emotional support, practical help and social contacts for people caring for a relative or friend with an illness or disability. They are places where carers can feel relaxed and confident that their needs will be understood.

Other activities may include courses for carers, home care, social events and accompanying carers to tribunals. Carers centres work closely with other local organisations. To find out if there is a carers centre near you contact:

The Princess Royal Trust for Carers
142 Minories
London
EC3N 1LB

Telephone: 020 7480 7788
Email: info@carers.org
Website: http://www.carers.org/
Young carers website: http://www.youngcarers.net/

Racial Equality Councils (RECs)

If you are from an ethnic minority community your local racial equality council may be able to give you information on local services and voluntary organisations or on interpreters or legal matters.

Look in the telephone book or contact the Commission for Racial Equality (CRE) for the address of your nearest REC.

Commission for Racial Equality
St Dunstan's House
201-211 Borough High Street
London
SE1 1GZ

Telephone: 020 7939 0000
Email: info@cre.gov.uk
Website: http://www.cre.gov.uk/

Radar

You may want to contact Radar if you have a physical disability in addition to dementia or if you are a carer with a physical disability. Radar is a national organisation run by disabled people that campaigns and works with disabled people to promote independence. It produces a wide range of publications on disability and can refer people to relevant specialist organisations.

Radar
12 City Forum
250 City Road
London
EC1V 8AF

Telephone: 020 7250 3222
Email: radar@radar.org.uk
Website: http://www.radar.org.uk/

Relatives and Residents Association

This association is for relatives and close friends of older people in long stay care in the UK.

It can advise on matters such as what to look for when choosing residential or nursing care, how to get an assessment, how fees are paid and what to do when problems occur within a home. It produces publications and an information pack. There are also some local relatives support groups.

Relatives and Residents Association
24 The Ivories
6-18 Northampton Street
London
N1 2HY

Telephone: 020 7359 8148
Email: info@relres.org
Website: http://www.relres.org/

For advice and support you can phone their advice line on 020 7359 8136 (weekdays 9.30am-4.30pm).

Samaritans

The Samaritans is a national charity that provides a range of completely confidential services for people who are suicidal or experiencing emotional distress.

The Samaritans can be contacted by phone, text, email or letter. The national helpline is open 24 hours a day, every day of the year. Contact:

Chris
PO Box 9090
Stirling
FK8 2SA

Telephone: 08457 90 90 90
Text: 07725 90 90 90
Email: jo@samaritans.org

If you would like to talk directly to a volunteer, contact your nearest branch. The address will be in the phone book. Most branches are open for callers to drop in but do check first.

Details of services provided by the Samaritans and addresses of local branches are available on their website at http://www.samaritans.org/.

Stroke Association

The Stroke Association is a national charity providing information and practical support for people who have had strokes and their families or carers. It aims to help reduce the incidence of stroke through health education, and funds research and campaigns for better services. Contact:

The Stroke Association
240 City Road
London
EC1V 2PR

Email: info@stroke.org.uk
Website: http://www.stroke.org.uk/

The Stroke information service is available 9am- 5pm, Mondays to Fridays on 0845 3033 100. All calls are charged at local rates.

Tourism for All UK

This national charity, formerly known as 'Holiday Care', provides advice and information on accessible holidays and travel for older people and people with special needs and their carers in the UK and abroad.

It can also provide details of a number of residential, nursing and holiday homes that are happy to cater for people with dementia with or without their carers. Some of these have special facilities for people with dementia and some offer limited help with personal care. Tourism for All does not visit the care homes listed. For more information contact:

Tourism for All
The Hawkins Suite
Enham Place
Enham
Alamein
Andover
Hants
SP11 6JS

Telephone: 0845 124 9971 (all calls charged at local rate)
Email: info@tourismforall.org.uk
Website: http://www.tourismforall.org.uk/

Vitalise

This charity, formerly known as the Winged Fellowship Trust, organises holidays for people with disabilities and their carers at five purpose-built centres in England. Care is provided by qualified staff and volunteers.

Four of the centres run special Alzheimer's weeks, sponsored by the Alzheimer's Society, at different times in the year for people with dementia and their carers. Carers on these weeks are encouraged to spend some time independently so that they also have a break. The fifth centre in Cornwall can cater for people with dementia and their carers all the year round. Care support is available but carers can provide any necessary care if they choose. Family accommodation is also available. For more information contact:

Vitalise
Shap Road
Kendal
Cumbria
LA9 6NZ

Holiday booking line 0845 345 1970 (9am-5pm, Mondays to Fridays; all calls charged at local rate)
Website: http://www.vitalise.org.uk/

Alzheimer's Society