After your diagnosis, you may feel shock, anger, grief or worry – not just for yourself but for the people around you too. But people can live well with dementia. Here are some things that can help.

1) Talk to someone             

Dealing with these feelings is hard, so it can help to talk to someone about it.

Many people find support groups helpful, because you can talk to people going through the same things. They also help you keep active and connect with others, which can help with your wellbeing and confidence. There are different types of groups, from ‘dementia cafés’ where you can have a cuppa and a chat, to singing and friendship groups. Some organisations in the ‘Other sources of help and information’ section can tell you about support groups in your area.

If you do not want to join a group, talk to someone close to you instead. It could be a family member, friend or carer – whoever you feel most comfortable confiding in.

You can also call our Stroke Support Helpline on 0303 3033 100 if you need someone to talk to.

2) Get the information you need

You may have lots of questions. You might wonder what’s going to happen and worry about not being able to do things for yourself. Finding out as much as you can will help ease your fears. There’s a lot of information to take in when you’re first diagnosed. Do not be afraid to ask questions, even if it’s weeks or months later. It’s important you understand what’s happening and why. Make a list of questions to take to your next appointment.

There are also dementia charities which can offer information, advice and support. Dementia UK offers a free helpline run by dementia specialist nurses on 0800 888 6678.

3) Look after your health and safety

Check your sight and hearing

• Getting regular eye tests and using any glasses you’re prescribed will help you see more clearly. This can make it easier to do everyday things like reading and cooking and reduce the chance of falls.
• Hearing tests can spot any hearing problems you may have. This is important as hearing loss is associated with dementia, depression and social isolation. Using hearing aids if you need them can help you respond more quickly in conversations and makes it easier to communicate. Hearing aids do not fully correct your hearing, but they do make sounds louder and clearer. They can take a little while to get used to, so ask your audiologist for support if you’re finding it hard.

Driving

If you’ve been diagnosed with dementia, by law you must inform the Driver and Vehicle Licensing Agency (DVLA) if you live in England, Scotland or Wales, or the Driver and Vehicle Agency (DVA) if you live in Northern Ireland. You may have to pay a large fine if you do not. They will ask you to fill in a form with details of your symptoms and any medication you’re taking. Your doctor can help you with this. You will also need to give them permission to contact your doctor for more information if they need it.

The DVLA or DVA will decide whether you can continue to drive, based on the information you and your doctor give them. Sometimes, they may ask you to complete a driving assessment at a local centre first.

You will also need to inform your insurance company that you’ve been diagnosed with dementia. Your policy could become invalid if you do not.

4) Plan for the future

Things are going to change as your dementia gets worse. Starting to plan for this now will help you and your family feel more prepared. Here are some of the things you may want to think about.

Your medical care

Your GP surgery should support you and anyone caring for you. They can offer treatments, referrals and advice to help you. Your GP should also see you at least once a year for a review, or sooner if you have any concerns. Dementia UK has tips for getting the most out of healthcare appointments.

Your doctor may talk to you about developing a care plan, though arrangements for how this is carried out can vary in different parts of the UK. A care plan is an agreement about the care you want to receive. It gives you a chance to discuss how you want to manage things, now and in the future.

It’s important your care plan covers everything you need. Think about what would help you manage your condition better.

Your care plan should be reviewed with you at least once a year, to make sure it still covers everything you need. But you can ask to review it before then if you need to.

Your care plan may include:

• The treatments and medication you’ve decided to try.
• Any eating or exercise plans you’re going to follow.
• Any other goals you want to work towards, such as giving up smoking or losing weight.
• Any support you need and who will provide it.
• An offer to assess the needs of any unpaid carers who support you, such as family members or friends.
• Referrals to other specialists you may need, such as physiotherapists or occupational therapists.

You can ask for a copy of your care plan to keep at home.

Your care at home

You’re probably going to need more care as your symptoms get worse. There are different services to help you with this. They may include paid carers who come and help you with day-to-day tasks, meal deliveries, equipment for your home and help for your family.

What’s available and who provides it varies depending on where you live. Some services are arranged through the NHS, whereas others may be provided by your local council (or via your Health and Social Care Trust in Northern Ireland).

Your GP surgery should be able to put you in touch with the services you need. They may also have a social prescriber who can direct you towards other support in the community.

Clinical services, support organisations and legal systems can vary in different parts of the UK. See ‘Other sources of support’ for details of organisations who can advise about what’s available where you live.

Money and work

It’s a good idea to get your finances in order as soon as possible. Make sure you have all the important documents you need, in a place where you can find them easily. This could include details of your bank accounts, your mortgage or rent payments, tax, pension and insurance policies.

Contact your local Citizens Advice, as they may be able to do a benefits check to see if you can get financial support. Or use Turn2us’ online benefits checker.

If you’re working, speak to your employer. You may not need to give up work, but you will need to talk to them about your symptoms and any support you may need.

Getting advice will help you make decisions. Find out about your rights as an employee, as well as the practical and financial support you may be able to get. Citizens Advice or a work coach at your local JobCentre Plus can help.

Legal matters

There may be a time in the future when your symptoms mean you can no longer make decisions for yourself. It’s important to plan for this while you’re still able to. There are some things that can help you do this.

• A lasting power of attorney is a legal document that allows you to choose someone to make decisions for you, when you’re no longer able to make them yourself (sometimes called not having ‘capacity’). There are different types of power of attorney, so it’s important to get advice before you make one. Your local Citizens Advice or a solicitor can advise you. We also have more information on power of attorney.
• An advance decision to refuse treatment, sometimes called a living will, allows you to refuse specific medical treatments. This would happen if you no longer have the ability (capacity) to make decisions about your medical treatment. It’s known as an advance directive in Scotland. In England, Northern Ireland and Wales, advance decisions are legally binding, as long as they meet legal standards. In Scotland, they are not legally binding in the same way but are likely to be treated as if they are by doctors, if they meet legal standards. It’s a good idea to get specialist advice about making an advance decision.
• An advance statement sets out your wishes for the future. It can include any aspect of your life. For example, where you would like to live if you’re not able to live independently, how you would like to be cared for, or choices about your diet. It’s not legally binding, but it will help those involved in your care to understand your wishes.
• A will allows you to decide what happens to your money and possessions when you die. If you already have a will, you should make sure that it’s up-to-date. If you do not have a will, then you should think about making one. You can write a will yourself, but it’s advisable to have it checked by a solicitor, to make sure it will be understood the way you want it to be.

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