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DEMENTIA

Just been diagnosed?

Don’t worry – we’re here to help you through. This page addresses the worries you might have immediately after diagnosis, looks at how other people usually feel after diagnosis, and offers guidance on what steps to take next.

Talk to someone now

Our helpline is open from 8am – 8pm, every weekday. Whatever your situation, we’ll take the time to listen to your concerns. We’ll do our best to help you through, answer your questions, and find you the right support. Call us now:

0300 222 5709

DEMENTIA

Just been diagnosed?

Don’t worry – we’re here to help you through. This page addresses the worries you might have immediately after diagnosis, looks at how other people usually feel after diagnosis, and offers guidance on what steps to take next.

Need to talk to someone now?

Our helpline is open from 8am – 8pm, every weekday. Whatever your situation, we’ll take the time to listen to your concerns. We’ll do our best to help you through, answer your questions, and find you the right support. Call us now:

0300 222 5709

Dealing with the impact

It’s normal to feel a wide range of emotions after being diagnosed with dementia. You might experience:

  • Anger – life hasn’t gone the way you expected it to go, and you’re frustrated and disappointed that you might have to make significant adjustments to your future
  • Grief or a sense of loss – you feel cheated out of your future, or you mourn the loss of the abilities you once had
  • Denial – you find it hard to believe your diagnosis
  • Depression – the diagnosis has been a blow to your outlook on life
  • Fear or panic – you’re scared of losing your independence, scared of your condition getting worse, or scared of the impact of your condition on your family and friends
  • Alone – nobody seems to understand what you’re going through. You find it difficult to communicate with your family and friends.
  • Relief – the diagnosis confirms the problems you’ve been experiencing and reassures you that you were right to take action

All of these feelings are normal. There’s no right or wrong way to feel.  

Your feelings might change from one day to the next. You may have some good days, then some bad days, with no overall pattern to your mood. There is always a period of adjustment after diagnosis, so it’s important not to deny your feelings or to feel guilty about how you’re reacting.

It can take a while to come to terms with a diagnosis of dementia, and the same goes for your family and your friends. In this time, it is important to talk openly and honestly about how you are feeling and how you and those close to you can support each other.

What can help:

Read more about the feelings you might have as you come to terms with your condition, and what other people have experienced:

Emotional impact

Having someone to talk to can be incredibly helpful when you’re coming to terms with a life-changing diagnosis. This page looks at how talking can help and who you could talk to:

Finding someone to talk to

Immediate worries

Is there anything that can be done?

Click the relevant link below to find out about the outlook for people with your condition:

Alzheimer’s Disease is a condition that can be managed (you can try to control the symptoms), but it is progressive, meaning it will get worse over time, and it can’t be cured.

It’s hard to learn that you have a condition that can’t be cured. A condition that can’t be cured is called a long-term condition, so instead of thinking about curing dementia, you’ll be thinking about how to manage the symptoms, slow down the progression of the disease, and make lifestyle changes to reduce the impact your condition has on doing what’s important to you.

Your reaction might be to try and ignore your diagnosis. But trying to convince yourself that you don’t have dementia won’t make it go away, and you’ll leave yourself vulnerable to future events that could damage your brain further. The best way to take control of your condition is to face up to it and tackle it, so that you can carry on doing what’s important to you. It involves being committed to receiving the treatment you need and making the appropriate lifestyle changes. There are many steps you can take that will shape your experience of the disease and the quality of your life.

Just because there’s no cure, it doesn’t mean there’s no hope. We’re learning more about dementia every year, and the range of effective treatments is growing. Our understanding of how to manage and live with dementia is greater than ever before. And there is a huge community of people out there living with Alzheimer’s who understand what you’re going through and can give you support.

The outlook for people with vascular dementia depends on the type of vascular dementia you have. While you can’t reverse the damage that has already happened to your brain, you should be able take steps to reduce the risk of future strokes that can make the condition worse.

It’s hard to learn that you have a condition that can’t be cured. A condition that can’t be cured is called a long-term condition, so instead of thinking about curing dementia, you’ll be thinking about how to manage the symptoms, slow down the progression of the disease, and make lifestyle changes to stop your condition getting in the way of what’s important to you.

Your reaction might be to try and ignore your diagnosis. But trying to convince yourself that you don’t have dementia won’t make it go away, and you’ll leave yourself vulnerable to future events that could damage your brain further. The best way to take control of your condition is to face up to it and tackle it, so that you can carry on doing what’s important to you. Some types of vascular dementia can be managed in such a way that your symptoms don’t get any worse,  but it involves being committed to receiving the treatment you need and making the appropriate lifestyle changes. There are many steps you can take that will change your experience of the disease and the quality of your life.

Just because there’s no cure, it doesn’t mean there’s no hope. We’re learning more about dementia every year, and the range of effective treatments is growing. Our understanding of how to manage and live with dementia is greater than ever before. And there is a large community of people out there living with Vascular dementia who understand what you’re going through and can give you support.

A diagnosis of DLB can be particularly difficult to receive. As well as the news that it can’t be cured, it’s hard to accept that medical professionals don’t yet know how to stop the progression of the disease. A condition that can’t be cured is called a long-term condition. Instead of thinking about curing dementia, you’ll be thinking about how to manage the symptoms and make lifestyle changes to reduce the impact your condition has on doing what’s important to you.

Your reaction might be to try and ignore your diagnosis. But trying to convince yourself that you don’t have dementia won’t make it go away, and you’ll leave yourself vulnerable to future events that could damage your brain further. The best way to take control of your condition is to face up to it and tackle it, so that you can carry on doing what’s important to you. It involves being committed to receiving the treatment you need and making the appropriate lifestyle changes. There are many steps you can take that will improve your experience of the disease and the quality of your life.

Just because there’s no cure, it doesn’t mean there’s no hope. We’re learning more about dementia every year, and the range of effective treatments is growing. Our understanding of how to manage and live with dementia is greater than ever before.

Frontotemporal Dementia is a condition that can be managed to an extent (you can try to control the symptoms), but it is progressive, meaning it will get worse over time, and it can’t be cured.

It’s hard to learn that you have a condition that can’t be cured. A condition that can’t be cured is called a long-term condition, so instead of thinking about curing dementia, you’ll be thinking about how to manage the symptoms, slow down the progression of the disease, and make lifestyle changes to reduce the impact your condition has on doing what’s important to you.

Your reaction might be to try and ignore your diagnosis. But trying to convince yourself that you don’t have dementia won’t make it go away, and you’ll leave yourself vulnerable to future events that could damage your brain further. The best way to take control of your condition is to face up to it and tackle it, so that you can carry on doing what’s important to you. It involves being committed to receiving the treatment you need and making the appropriate lifestyle changes. There are many steps you can take that will improve your experience of the disease and the quality of your life.

Just because there’s no cure, it doesn’t mean there’s no hope. We’re learning more about dementia every year, and the range of effective treatments is growing. Our understanding of how to manage and live with dementia is greater than ever before.

What will my friends/family/partner say?

You’re probably also worried about how you’re going to break the news of your diagnosis to the people you’re closest to. We recommend taking a look at our guide to telling your loved ones about your diagnosis. It looks at how to choose the right time and place to tell them, what you might want to say, and what reactions you might get:

Telling your loved ones

What will my employer say?

A lot of people with a dementia diagnosis worry that they might lose their job if they tell their employer. It’s important to know what your rights at work are and what support you’re entitled to, such as flexible work arrangements or paid sick leave:

Working with dementia


Next steps

1. Learn about your condition and what you can do

Our Understanding Dementia section tells you everything you need to know about your particular diagnosis and treatment options available to you.

It also looks at some of the strategies you can try to help manage your condition, from tackling sleep issues to maintaining mobility, or managing problems with your memory. With our guidance, you’ll be able to start managing your condition and minimising the impact it has on your life.

Understanding dementia

2. Find out what care you’re entitled to

Your local council has a duty to assess everyone who appears to need care and support to see if there’s anything they can do for you. You’re entitled to this assessment regardless of your financial situation. The local council will look at what you want to be able to do in everyday life, and how your condition affects your ability to do these things.

Depending on the outcome of your assessment, they might be able to offer your support. At the very least, they’ll give you information about the support you can access in your local area. Read more about the assessment by clicking the link below:

The care needs assessment

3. Think about the legal stuff

Once you’ve come to terms with your condition, it’s important to think about the future. Some forms of dementia are progressive and can gradually damage your ability to make decisions. This means that there might come a point when you’re no longer capable of making decisions about your healthcare or your finances.

There’s lots of things you can do to prepare for this, including setting our your wishes in advance or nominating someone you trust to make decisions on your behalf when needed. Our section on Planning the Future is written to help you understand all of the options available to you:

Planning the future


How we can help

More information on dementia

The HERE site has guidance on all aspects of life with dementia. Treatment options, relationships, moving home, travelling, planning your future – it’s all here in one place. Just hover over (or click) the navigation bar at the top, select I need care & support then Dementia, and you’ll find all the information you need.

Help with accessing financial support or care

We’ve also got more general information for anyone living with a long-term health condition. If you’re worried about the impact of living with dementia on your finances, or you don’t know how you’re going to afford care, we’ve got guidance on the financial support you can access. We have guidance on navigating the vast and often confusing world of health and social care and getting the support you’re entitled to. We also have information on your rights at work, your right to make your own decisions, and what to do if you’ve been the victim of discrimination or abuse. All of this information can be found by selecting I need care & support then Advice for everyone.

Phone support

As well as online information, we’ve got a helpline team ready to talk to you over the phone. If you’ve got a question, or you just want to talk to someone, you can call the HERE helpline on 0300 222 5709. For more information on calling the HERE helpline, click here.

Further support

We offer further support if you become a member of HERE. Membership gives you:

  • Ongoing phone support – we’ll keep a record of past conversations so you don’t have to tell your story again and again. We can also arrange a regular call to see how things are going, or just chat.
  • Local information – Looking for support can be hard, and you might not have the time to do your own research. When you’re looking for support in your local area, we’ll do the research for you, and we’ll give you a list of relevant services and support groups that you can access. We can send this to you via e-mail or by post.

Signing up as a member is easy and costs £1 a month. To find out more about the support we offer and sign up, click here.