Support for dementia carers

Expert reviewer Professor Graham Stokes, Bupa Global Director of Dementia Care
Next review due September 2020

Many people who care for a loved one with dementia don’t realise how much support is available for carers. This section groups together the details of different types of support.

You don’t need to be in a crisis to contact any of the organisations or services we have listed here. In fact, it’s much better to seek support 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

If you ask your local council for support, they should offer you a carer’s assessment. This is a chance to talk about how caring affects your life and if the council can provide any support or services to help.

The support you’ll be offered will depend on your situation, but it could include help for both you and the person with dementia. For example, you may be able to arrange:

• 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)
• temporary help at home so you can have a break

Contact your local council or speak to you GP to arrange an assessment.

Financial support

In a 2017 survey by Alzheimer's Society, more than a quarter of people said their finances got worse after caring for a loved one with dementia. There can be all sorts of reasons for this – from people having to reduce their working hours, to having to save 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.

The person you care for may be eligible for certain benefits because of their dementia. If you look after someone for at least 35 hours a week and they get certain disability benefits, you might be eligible for a weekly payment called Carer’s Allowance. There are government benefits available for a variety of situations, including for people who have mobility difficulties or need care, and for people who 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.

Legal support

After a diagnosis of dementia, it’s a good idea to think about certain legal issues. Your loved one may want to write a will, arrange Power of Attorney, or record their wishes about their future treatment and care.

You 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)
• the Law Society of Scotland website
• the Law Society of Northern Ireland website

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 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's Scotland provides a range of services and support to people affected by dementia in Scotland. This includes local Dementia Advisers, a free 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 1174).

Local support

It can make a huge difference, having help close to home. 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’s 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 UK branches 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. As an example, in Kent, Alzheimer's and Dementia Support Services is a charity that provides local support and advocacy for carers.

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.

Bupa Elderly Care Support Line

Bupa has a team of trained advisers who can help you think through your options if you're planning care for an older loved one. It’s a free and impartial service and is open to everyone – you don’t need to have Bupa insurance. The number is 0333 920 9637.

The line is open every day. You can call from 8am to 8pm, Monday to Friday, or 9am to 5pm at weekends.

It could help if you:

It’s important to stay in touch with friends and family. They can help you in a number of ways.

• are starting to think about residential care for your loved one
• have questions about paying for care
• need help finding the right care home
• are thinking about short-term, convalescent or home care for your loved one

We have more information about the Bupa Elderly Care Support Line and how it can help.

Dementia helplines

Alzheimer’s Society

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

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)

0808 808 3000

Email: helpline@alzscot.org

Opening hours: 24 hours, seven days a week.

Carers’ helplines

Carers UK

0808 808 7777

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

NHS Carer’s Direct (for carers in England)

0300 123 1053

Opening hours: Monday to Friday, 9am to 8pm; and weekends, 11am to 4pm.

Helplines for older people and their carers

Age UK

0800 678 1174

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

Independent Age

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)

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

116 123

Email: jo@samaritans.org

Opening hours: 24 hours, seven days a week.