Being told that you’ve got vascular dementia can be devastating. Suddenly your future is not what you thought it would be. People feel lots of different emotions when faced with news like this. You may feel shock, anger, grief or worry, and not just for yourself but for the people around you too.
But people can live well with dementia. There are treatments that can help with symptoms or slow the progression of dementia. People with dementia can lead active, purposeful lives.
Talk to someone
Dealing with these feelings can be hard, so it can help to talk to someone about them. Many people find support groups helpful, because you can talk about your problems with people who are going through the same thing. Find out more about the support groups we offer in your area.
Get the information you need
You’re going to have lots of questions. You may 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 to ease your fears. There’s a lot of information to take in when you’re first diagnosed, so don’t be afraid to go back and ask questions, even if it’s weeks or months later. It’s important that you understand what’s happening and why.
Sit down and write a list of all the questions you have and take it to your next appointment.
Questions to ask your specialist
- Will my symptoms get worse?
- How quickly will it happen?
- Is there anything I can do to slow it down?
- Are there any treatments that can help me with my symptoms?
- Do I need scans or blood tests?
- How often will I have appointments with you?
- What services are available to help me?
- Who can I talk to about care at home?
- Are there local support groups that I can contact?
- Is there anything else I should think about?
Care plans for dementia
Your doctor should talk to you about developing a care plan. This is an agreement between you and your doctors 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 that your care plan covers everything you need, so think about what would help you to manage your condition better. Use the time you have with your doctor to ask questions and talk about any worries or concerns you have.
Your care plan should explain:
- 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’ll provide it.
- Who you should contact if you’re unwell and your GP surgery is closed.
- When your plan will be reviewed.
Your care at home
You’re probably going to need more care as your symptoms get worse. There are lots of services to help you with this. They include carers who come and help you with day-to-day tasks, equipment for your home and help for your family.
What’s available and who provides it varies from area to area. Some services are arranged through the NHS, whereas others may be provided by your local council. Your GP should be able to put you in touch with the services you need, or you can contact our helpline for further information.
If you’ve been diagnosed with dementia, you will have to 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 don’t. They will ask you to fill in a form, giving them 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 make a decision about 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. It’s likely that you will have to stop driving at some point, but you may not have to do it straight away.
You will also need to inform your insurance company that you’ve been diagnosed with dementia, as your policy could become invalid if you don’t.
Learn about driving after a stroke.
Work and finances
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 be details of your bank accounts, your mortgage or rent payments, tax, pension and insurance policies.
Contact your local Citizen’s Advice, as they will be able to do a benefits check to see if you may be able to get financial support from the government.
If you are still working you’ll need to 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 to help you with them. Getting advice will help you make the decisions you need to. So find out about your rights as an employee as well as the practical and financial support you may be able to get. Your local Citizen’s Advice or the disability employment adviser at your local JobCentre Plus will be able to help.
There may be a time in the future when your symptoms mean you’re no longer able to make decisions for yourself. It’s important to plan for this while you’re still able to, so you can ensure that your future is how you want it to be. There are some things that can help you do this.
- A 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.
- An advance decision, sometimes called a living will, allows you to refuse medical treatments you might be offered in the future.
- An advance statement sets out all of your wishes for the future.
- 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 don’t already have a will, then you should think about writing one. You can write a will yourself, but it’s sensible to have it checked by a solicitor to make sure it will be understood the way you want it to be.