UK Dementia Support Organisations including Scotland, Wales and Northern Ireland
UK-Wide Organisations
1. Dementia UK — Admiral Nurse Helpline Phone: 0800 888 6678 (Monday to Friday 9am to 9pm, Saturday and Sunday 9am to 5pm) Email: helpline@dementiauk.org Website: dementiauk.org
Provides specialist dementia support through Admiral Nurses who offer one-to-one clinical and emotional guidance for anyone with concerns about any type of dementia. Admiral Nurses are particularly valuable for families facing complex or difficult dementia scenarios where standard services may not be sufficient. Phone and video appointments can also be booked online.
2. Alzheimer’s Society Devon House, 58 St Katharine’s Way, London, E1W 1LB Phone: 0333 150 3456 Text relay: 18001 0333 150 3456 Website: alzheimers.org.uk
The national lead body for dementia information, guidance and support in England, Wales and Northern Ireland. Provides factsheets, a dementia directory of local services, an online forum called Talking Point, and signposting to appropriate organisations. Text relay support is available for people with speech or hearing difficulties.
3. Rare Dementia Support c/o Dementia Research Centre, Box 16, National Hospital for Neurology and Neurosurgery, London, WC1N 3BG Phone: 020 3318 0243 Email: contact@raredementiasupport.org Website: raredementiasupport.org
Specialist service offering information and peer support for people affected by rare or young-onset dementias including frontotemporal dementia, Lewy body dementia and Posterior Cortical Atrophy. Offers one-to-one support sessions, online groups and resources for families and professionals.
4. Age UK 7th Floor, One America Square, 17 Crosswall, London, EC3N 2LB Advice Line: 0800 678 1602 (365 days a year) Website: ageuk.org.uk
National charity for older people providing a free advice line for information on health, social care, money and legal issues. Supports a network of over 150 local Age UKs across England providing community-based support.
5. Lewy Body Society Unity House, Westwood Park, Wigan, WN3 4HE Phone: 01942 914000 Website: lewybody.org
A specialist charity focused on research and support specifically for Lewy body dementia. Provides information leaflets, community resources and funds research into the condition.
6. Tide — Together in Dementia Everyday 151 Dale Street, Liverpool, L2 2AH Email: carers@tidecarers.org.uk Website: tide.uk.net
A UK-wide involvement network that works side by side with carers to ensure their voices are heard. Empowers current and former dementia carers to use their lived experience to advocate for systemic change and improve services and policy. Runs monthly online meet-ups for carers including a dedicated group for young-onset dementia carers.
7. Young Dementia Network Email: youngdementianetwork@dementiauk.org Website: youngdementianetwork.org
An online community of people living with young-onset dementia, their family, friends and professionals. Creates resources for younger people and their families, campaigns for policy and practice change, and maintains a searchable database of young-onset dementia support groups and services across the UK. Also produces Young Onset Dementia ID cards which carers can use to quietly inform bystanders that unusual behaviour is a symptom of an illness, avoiding the need for stressful public explanations.
England
8. Carers UK 20 Great Dover Street, London, SE1 4LX Phone: 020 7378 4999 Website: carersuk.org
Provides information and advice for anyone in a caregiving role in England, including guidance on financial support, rights in the workplace and accessing local services. Runs an online forum and regular webinars for carers.
Scotland
9. Alzheimer Scotland 160 Dundee Street, Edinburgh, EH11 1DQ 24-hour Helpline: 0808 808 3000 Website: alzscot.org
Operates a free, confidential 24-hour helpline providing signposting and emotional support to people with dementia, families and professionals anywhere in Scotland. Provides dementia-specific services across Scottish communities through a network of local offices.
10. Age Scotland Causewayside House, 160 Causewayside, Edinburgh, EH9 1PR Phone: 0800 124 4222 Website: agescotland.org.uk
The leading charity for older people in Scotland providing specialist information, advocacy and community support tailored to Scottish residents and the Scottish health and social care system.
11. Carers Scotland Suite 1B, 38 Queen Street, Glasgow, G1 3DX Phone: 0141 378 1065 Website: carersuk.org/scotland
Offers expert advice and advocacy specifically for carers living in Scotland, focusing on Scottish benefits, legal rights and regional support systems including the Carers (Scotland) Act 2016.
Wales
12. Carers Wales C12 Business Centre, 12 Cathedral Road, Cardiff, CF11 9LJ Phone: 029 2081 1370 Website: carersuk.org/wales
Provides guidance and tools specifically for Welsh carers including an advice service and resources available in the Welsh language (Cymraeg).
13. Alzheimer’s Society Wales — Welsh Language Line Phone: 0330 094 7400 Website: alzheimers.org.uk/wales
A dedicated dementia support line staffed by Welsh speakers to provide information and guidance in Cymraeg for Welsh-speaking carers and families.
14. Age Cymru Mariners House, Trident Court, East Moors Road, Cardiff, CF24 5TD Phone: 029 2043 1555 Website: ageuk.org.uk/cymru
The leading national charity for older people in Wales, delivering community programmes and specialist advice for Welsh residents on care, health and financial matters.
Northern Ireland
15. Dementia NI NICVA Building, 61 Duncairn Gardens, Belfast, BT15 2GB Phone: 028 9693 1555 Website: dementiani.org
A regional charity founded by people living with dementia to provide peer support groups and ensure the active voice of those with lived experience is heard in Northern Ireland’s health and social care planning.
16. Carers Northern Ireland 58 Howard Street, Belfast, BT1 6JP Phone: 028 9043 9843 Website: carersuk.org/northernireland
Provides expert advice and advocacy for carers in Northern Ireland, including information on specific regional health and social care pathways and entitlements.
17. Age NI 3 Lower Crescent, Belfast, BT7 1NR Phone: 028 9024 5729 Website: ageuk.org.uk/northernireland
Regional organisation for older people in Northern Ireland providing information on care, health and local community services.
Practical Notes for UK Carers
- Sudden changes may not be the dementia progressing If you notice a significant increase in confusion or agitation that appears within hours or a day, do not assume the dementia has worsened. Common treatable causes include urinary tract infections, which often present without fever in older people, dehydration and constipation. Contact your GP or call the Dementia UK Admiral Nurse Helpline on 0800 888 6678 before concluding the condition has changed.
- Young-onset dementia and financial pressure A diagnosis in mid-life creates unique pressures around mortgages, dependent children and employment. Contact your lender early about hardship provisions and ask your GP or specialist specifically about younger-onset services tailored to working-age life. The Young Dementia Network at youngdementianetwork.org is the most useful starting point for families in this situation.
- Lasting Power of Attorney cannot wait Lasting Power of Attorney documents can only be completed while the person living with dementia still has the mental capacity to do so. That window narrows as the condition progresses. If you have not yet addressed this, contact a solicitor with experience in elder law as a matter of urgency. The Alzheimer’s Society website has clear guidance on what is involved.
- A critical note for Lewy body dementia If the person you are caring for has been diagnosed with Lewy body dementia, this diagnosis must be clearly communicated to all medical staff before any new medication is prescribed, particularly antipsychotics. People with Lewy body dementia can have severe and life-threatening reactions to medications that are routinely used for other forms of dementia. Never assume this information has been passed on between providers.
- Admiral Nurse support for complex situations For families dealing with particularly difficult or complex dementia scenarios, Admiral Nurses provide one-to-one clinical support that goes beyond what standard general services offer. Call the Dementia UK Helpline on 0800 888 6678 or book a phone or video appointment at dementiauk.org.
- Devolved health systems Health and social care in Scotland, Wales and Northern Ireland operate under different rules, entitlements and pathways from England. If you are unsure what support is available where you live, contact your regional organisation from the list above rather than a UK-wide service, as they will understand your local system.