Getting support with dementia

Expert reviewer, Versha Sood Mahindra, Dementia Lead, Bupa Care Services
Next review due January 2024

Whether you have dementia yourself or are looking after a loved one, there are various organisations, peer support networks and helplines that you can turn to for support.

You don’t need to be in a crisis to use any of the organisations or services we have listed here. In fact, it’s much better to seek support with dementia before things get to that point. Don’t feel that you have to manage on your own.

Practical, financial and legal support

Help from your local council

Your local council can provide support if you have dementia, or if you care for someone who does. The support you’ll be offered will depend on your situation, but it could include:

• equipment or help with adapting your home
• meals for the person with dementia being delivered to your home
• help with the cost of travelling (for example, taxi fares to reach a day centre)
• temporary help at home if you’re a carer, so you can have a break
• training in understanding aspects of care that may be new to you
• carer counselling and peer support groups
• support from a social worker

Contact your local council or speak to you GP to arrange an assessment. If you look after someone with dementia, you’re entitled to a carer’s assessment no matter what type of care you provide, your finances or how much help you need.

Financial support

A dementia diagnosis can have a financial impact on the whole family. There can be all sorts of reasons for this – from carers having to reduce their working hours, to saving up for residential care in the future. It can be really worrying having money issues at a time when you have lots of other things on your mind.

Government benefit payments may be available to you if you have dementia, or if you look after someone who does. You may be eligible if you:

• have difficulty moving around or need care from others
• look after someone who is ill or disabled
• have a low income

The Gov.uk website has more information about Carer’s Allowance and other benefits that may be available to you. You can also get advice about how to get financial support from your local Citizens’ Advice or over the phone from charities such as Turn2Us.

Legal support

After a diagnosis of dementia, it’s a good idea to think about certain legal issues. If you have been diagnosed with dementia, you may want to:

• write a will
• arrange power of attorney (a legal document that allows someone to make certain decisions on your behalf)
• record your wishes about treatment and care you might need in the future
• get to know what to do when your loved ones lose capacity to take certain decisions due to dementia

Your local Citizens’ Advice is a good starting point for getting legal advice. They can tell you about local solicitors and may be able to give you some free initial legal advice.

You can search for solicitors in your area, by specialism, on the:

• Law Society website (England and Wales)
• Law Society of Scotland website
• Law Society of Northern Ireland website

Other support from your local council or authority could include:

• using your local library to borrow dementia friendly audios or other books
• dedicated facilities like Dementia Hubs
• carers information and support programmes
• day support services (to provide respites for carers)
• advocacy services

National organisations

Alzheimer’s Society

www.alzheimers.org.uk

Alzheimer’s Society is the UK’s largest dementia charity. The support they offer for carers includes:

• a free dementia helpline (0300 222 11 22)
• an online community called Talking Point, where you can contact other carers and ask questions
• detailed information about many aspects of living with dementia or being a carer

Dementia UK

www.dementiauk.org

Dementia UK can help carers through Admiral Nurses, who specialise in helping families affected by dementia. You can call its helpline on 0800 888 6678 for free advice and support, or email to see whether an Admiral Nurse is available near you.

Alzheimer’s Scotland

www.alzscot.org

Alzheimer Scotland provides a range of services and support to people affected by dementia in Scotland. This includes local Dementia Advisers, a free 24-hour helpline (0808 808 3000), peer support and community activities. The charity also runs day centres where people with dementia and their carers can take part in therapeutic activities run by trained specialists.

AT Dementia

www.atdementia.org.uk

AT Dementia provides information about equipment and products that can help people with dementia and their carers: for example, medication reminders, computer aids and easy-to-use mobile phones.

Carer’s UK

www.carersuk.org

Carer’s UK is there to help anyone who cares for a loved one, including dementia carers. They offer advice on their website, a free helpline (0808 808 7777) and a forum.

Age UK

www.ageuk.org.uk

Age UK provides information and advice for older people and those who care for them, through its website and free helpline (0800 678 1602).

Local support

Having help close to home can make a huge difference. Here are some starting points for finding out about dementia support in your area.

• Alzheimer's Society has an online directory of local services across the UK, which you can search online for support available near you. This includes local support groups – which can be a really valuable way to connect with others going through similar experiences.
• Alzheimer Scotland also has a local service directory for Scotland.
• Dementia UK can provide Admiral Nurses, who specialise in dementia, in some local areas – you can check if one is available near you on their website.
• The charity Carer’s Trust has a UK-wide network of local services for carers. The support available includes practical and emotional help, and emergency services to help if you’re facing a crisis.
• In England, local Age UKs can provide a range of support for older people – from help with gardening to social activities and benefits advice.

It’s also worth checking for support organisations that operate specifically in your area.

Your GP or hospital staff should be able to tell you about ongoing medical support for the person with dementia. They may also be able to point you in the direction of other local support services.

Don’t forget that you’re also entitled to a carer’s assessment from your local council – a chance to discuss your needs and those of the person you care for.

Helplines

You don’t need to be facing an emergency to call any of the helplines listed below. They are there for anyone who needs support, at any time – no query is too small. All of these helplines are manned by staff or volunteers who have been trained to give information and support in a sensitive way. 

Dementia helplines

Alzheimer’s Society

www.alzheimers.org.uk

0300 222 11 22

Email: via website

Opening hours: Monday to Wednesday, 9am to 8pm; Thursday and Friday, 9am to 5pm; and weekends, 10am to 4pm.

Admiral Nurse Dementia Helpline

www.dementiauk.org

0800 888 6678

Email: helpline@dementiauk.org

Opening hours: Monday to Friday, 9am to 9pm; and weekends, 9am to 5pm.

Alzheimer’s Scotland (for people in Scotland)

www.alzscot.org

0808 808 3000

Email: helpline@alzscot.org

Opening hours: 24 hours, seven days a week.

Support for carers

Carers UK

www.carersuk.org

0808 808 7777

Opening hours: Monday to Friday, 10am to 4pm. 

Helplines for older people and their carers

Age UK

www.ageuk.org.uk

0800 678 1174

Opening hours: every day, 8am to 7pm.

Independent Age

www.independentage.org

0800 319 6789

Email: advice@independentage.org

Opening hours: Monday to Friday, 8am to 8pm; Saturday, 9am to 1pm.

Non-emergency medical advice

NHS 111 (NHS 24 in Scotland)

NHS111 -  111.nhs.uk;   NHS 24 in Scotland - www.nhs24.scot

Call 111 if you need quick medical advice but it's not a 999 emergency, or if you need health information or reassurance. This service is run by the NHS.

Opening hours: 24 hours, seven days a week.

Emotional support

Samaritans

www.samaritans.org

116 123

Email: jo@samaritans.org

Opening hours: 24 hours, seven days a week.

Mind

www.mind.org.uk

0300 123 3393

Email: info@mind.org.uk

Text: 86463

Opening hours: 9am to 6pm, Monday to Friday (except bank holidays).