Voluntary organisations

If you, or someone you know, have dementia, there are a number of voluntary organisations that may be able to provide you with information, advice and practical help. This factsheet provides details for a range of voluntary organisations that you can contact for more information.

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. Places of worship and community organisations 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. In addition, Alzheimer's Society can also provide advice.

Citizens Advice Bureau

Various locations
W http://www.citizensadvice.org.uk/
     http://www.adviceguide.org.uk/

A network of free, independent and confidential local services in which trained Citizens Advice advisers offer information and advice on topics such as benefits, housing, employment, debts, family and personal problems or problems that people experience because they are from a minority group. It can also give details of national and local organisations and services, including support groups.

Most centres 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 centres have telephone advice sessions but lines tend to be very busy and you may need to be persistent. A growing number provide an email service. You can also write a letter explaining your problem if you prefer.

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

Some neighbourhoods have similar advice centres that are not part of the Citizens Advice Bureau, but that 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.

Councils for voluntary service

National Association for Voluntary Community Action
The Tower
2 Furnival Square
Sheffield S1 4QL
T 0114 278 6636
E navca@navca.org.uk
W http://www.navca.org.uk/

Wales Council for Voluntary Action
Baltic House
Mount Stuart Square
Cardiff CF10 5FH
T 029 2043 1700
E enquiries@wcva.org.uk
W http://www.wcva.org.uk/

Councils for voluntary service can provide information about voluntary organisations in your area and assist in setting up self-help and support groups. These councils may go under different names, such as 'voluntary action' or 'voluntary service' councils. To get in touch, look in your telephone directory, ask at your local library or contact your national organisation (see above).

National organisations

This section provides information about a range of national organisations that offer support, information and advice to people with dementia, their friends and family, and those who care for them. Many of these have a network of local groups.

Age Concern

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/

Age Concern Cymru
Ty John Pathy
13-14 Neptune Court
Vanguard Way
Cardiff CF24 5PJ
T 029 2043 1555
E enquiries@accymru.org.uk
W http://www.accymru.org.uk/

Charity providing services for older people in the UK through a federation of local groups run by volunteers and paid staff. Local activities vary 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 phone book under Age Concern for your nearest group, or contact national Age Concern (see above).

For advice, information and factsheets on issues ranging from help with heating to choosing a residential home, phone the Age Concern information line.

Alzheimer's Society

Devon House
58 St Katharine's Way
London E1W 1JX
T 020 7423 3500
   0845 3000 336 (helpline, open 8.30am-6.30pm weekdays)
E info@alzheimers.org.uk (general information)
   helpline@alzheimers.org.uk (helpline)
W alzheimers.org.uk

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 more than 230 local branches and support groups. Members of the Society receive a monthly magazine.

The Society has expertise in information provision and education about dementia 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.

Alzheimer's Society Talking Point

W http://forum.alzheimers.org.uk/

Online discussion board run by the Alzheimer's Society for carers to exchange messages with others who may be in a similar situation.

Assist UK

Redbank House
4 St Chad's Street
Manchester M8 8QA
T 0870 770 2866
E general.info@assist-uk.org
W http://www.assist-uk.org/

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 phone, email, visit or write to a centre. Free leaflets and factsheets are available at local centres.

Bladder and Bowel Foundation

SATRA Innovation Park
Rockingham Road
Kettering NN16 9JH
T 01536 533 255
E info@bladderandbowelfoundation.org
W http://www.bladderandbowelfoundation.org/

A charity for people affected by bladder and bowel problems (formerly Incontact and the Continence Foundation). It provides support and information, and represents the interests of people with continence problems.

British Association for Counselling and Psychotherapy (BACP)

BACP House
15 St John's Business Park
Lutterworth
Leicestershire LE17 4HB
T 01455 883 300
E bacp@bacp.co.uk
W http://www.bacp.co.uk/
    
National body representing counsellors and psychotherapists. Can provide details of counsellors and psychotherapists in your local area, with details of their specialisation, qualifications, training and fees. This may be useful for people with dementia and those who are close to them, to help them cope with difficult and confusing feelings. Details of free and low cost counselling, where this exists, are also given.

Carers UK

20 Great Dover Street
London SE1 4LX
T 020 7378 4999 (general enquiries)
   0808 808 7777 (free carers line)
E info@ukcarers.org
W http://www.carersuk.org/

Charity that 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. Members receive a free quarterly journal. Carers Line provides information and advice on a range of topics, from welfare benefits to assessments.

Charity Search

Freepost (BS 6610)
Avonmouth
Bristol BS11 9TW
T 0117 982 4060
E info@charitysearch.org.uk
W http://www.charitysearch.org.uk/

National charity that signposts older people and people with disabilities who are in financial need to support available from a range of charitable sources.

CJD Support Network

PO Box 346
Market Drayton
Shropshire TF9 4WN
T 01630 673 993
E info@cjdsupport.net
W http://www.cjdsupport.net/

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

Counsel and Care

Twyman House
16 Bonny Street
London NW1 9PG
T 020 7241 8555 (general enquiries)
   0845 300 7585 (advice line, weekdays 10am-4pm except Wednesdays: 10am-1pm)
E advice@counselandcare.org.uk
W http://www.counselandcare.org.uk/

Charity that provides free and confidential advice for people over 60 and their relatives, friends and carers on subjects such as welfare benefits or help at home. The charity has a particular expertise in residential care. It also publishes a wide range of factsheets.

Crossroads Association

10 Regent Place
Rugby CV21 2PN
T 0845 450 0350
E Email via the website (below)
W http://www.crossroads.org.uk/

Organisation that 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.

Cruse Bereavement Care

PO Box 800
Richmond TW9 1UR
T 0844 477 9400 (helpline)
E info@cruse.org.uk
W http://www.crusebereavementcare.org.uk/

Charity offering support to people of all ages, backgrounds and beliefs after the death of someone close. There are branches throughout the UK, run mainly by volunteers, many of whom are trained counsellors. If you want to speak to a counsellor, ring the above helpline.

If there is a branch near you, Cruse 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)

380-384 Harrow Road
London W9 2HU
T 020 7289 6111
   0845 130 9177 (helpline, 10am-4pm weekdays)
E advice@dlf.org.uk
W http://www.dlf.org.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 make an appointment to see a DLF adviser at the DLF Equipment Demonstration Centre between 10am and 4pm weekdays. For appointments please phone the helpline.

Elderly Accommodation Counsel (EAC)

3rd Floor
89 Albert Embankment
London SE1 7TP
T 020 7820 1343 (helpline, Monday to Friday)
E enquiries@e-a-c.demon.co.uk
W http://www.eac.org.uk/
    http://www.housingcare.org/

Charity that provides detailed information on all types of accommodation for older people in the UK. It can also offer advice and guidance to help people choose the type of accommodation most suited to their needs.

Equality and Human Rights Commission

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/

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

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/

Help the Aged (Wales)
12 Cathedral Road
Cardiff CF11 9LJ
T 02920 346 550
   0808 800 6565 (SeniorlLine freephone, weekdays 9am-4pm)
E infocymru@helptheaged.org.uk
W http://www.helptheaged.org.uk/

Charity that 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 leaflets. SeniorLine is staffed by trained advice workers offering support and information on a range of issues, including benefits, care at home and residential care

Huntington's Disease Association

Neurosupport Centre
Liverpool L3 8LR
T 0151 298 3298
E info@hda.org.uk
W http://www.hda.org.uk/

Association that 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.

Mind

Mind England
PO Box 277
Manchester M60 3XN
T 0845 766 0163 (Mindinfoline 9.00-5.00 weekdays)
E contact@mind.org.uk
W http://www.mind.org.uk/

Mind Cymru
Quebec House
Castlebridge
Cowbridge Road East
Cardiff CF11 9AB
T 02920 395 123
E contactwales@mind.org.uk
W http://www.mind.org.uk/

Mental health charity that aims to improve 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.

MindinfoLine, 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.

A network of independent groups are affiliated 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 and social clubs.

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

Parkinson's Disease Society

215 Vauxhall Bridge Road
London SW1V 1EJ
T 0808 800 0303 (helpline 9.30am-5.30pmn)
E Email via the website (details below)
W http://www.parkinsons.org.uk/

Charity that provides information, advice and support and helpful publications for people with Parkinson's disease. It can put you in touch with your nearest branch, offering information, support and social contact for people with Parkinson's and their families.

Patients Association

PO Box 935
Harrow
Middlesex HA1 3YJ
T 020 8423 9111
   0845 608 4455 (helpline 10am-4pm weekdays)
E helpline@patients-association.com
W http://www.patients-association.com/

Charity that campaigns for the rights of patients and better health services. It produces helpful leaflets, booklets, and advice on any aspect of healthcare.

Pick's Disease Support Group

8 Brooksby Close
Oadby
Leicester LE2 5AB
T 0845 458 3208
E carol@pdsg.org.uk
W http://www.pdsg.org.uk/

Support group established for carers and people with dementia with Lewy bodies, fronto-temporal dementia (including frontal lobe degeneration and Pick's disease), alcohol-related dementia, and corticobasal degeneration. It holds quarterly meetings in London, Liverpool and Nottingham for carers, and produces a quarterly newsletter and information packs.

Princess Royal Trust for Carers

142 Minories
London EC3N 1LB
T 0844 800 4361
E help@carers.org
W http://www.carers.org/ (general website)
   http://www.youngcarers.net/ (website for young carers)

Charity that works through a network of independent carers' centres across 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, working closely with other organisations. 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.

Radar

12 City Forum
250 City Road
London EC1V 8AF
T 020 7250 3222
E radar@radar.org.uk
W http://www.radar.org.uk/

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.

Relatives and Residents Association

24 The Ivories
6-18 Northampton Street
London N1 2HY
T 020 7359 8148
   020 7359 8136 (advice line, weekdays 9.30am-4.30pm)
E info@relres.org
W http://www.relres.org/

Association 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 care home. It produces publications and an information pack. There are also some local relative support groups.

Samaritans

T 08457 90 90 90 (24 hours, seven days a week)
E jo@samaritans.org
W http://www.samaritans.org/

Charity that provides confidential, non-judgemental, emotional support, 24 hours a day, for people who are experiencing feelings of distress or despair, including those which could lead to suicide, either by phone, by email or face to face.

If you would like to talk to a volunteer face-to-face, contact your nearest branch. To find your nearest branch look in the phone book or on the website (above). Most branches are open for callers to drop in, but do check first.

Stroke Association

240 City Road
London EC1V 2PR
T 0845 3033 100 (helpline 9am-5pm weekdays)
E info@stroke.org.uk
W http://www.stroke.org.uk/

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.

Tourism for All

c/o Vitalise (see below)
T 0845 124 9971
E info@tourismforall.org.uk
W http://www.tourismforall.org.uk/

Charity, formerly known as Holiday Care, that 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.

Vitalise

Shap Road Industrial Estate
Shap Road
Kendal
Cumbria LA9 6NZ
T 0845 345 1972
   0845 345 1970 (holiday booking line, 9am-5pm weekdays)
E info@vitalise.org.uk
W http://www.vitalise.org.uk/

Charity, formerly known as the Winged Fellowship Trust, that 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' 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. A 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.

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

Factsheet 412

Last updated: March 2009
Last reviewed: September 2008

Reviewed by: Peter Gill, Senior Information Officer, Alzheimer's Society