Dementia Support Line
Diagnosing young-onset dementia
Getting an accurate diagnosis is important but can take longer for a younger person. Read more about being referred to a specialist and genetic testing.
- Young-onset dementia
- What causes young-onset dementia?
- You are here: Diagnosing young-onset dementia
- Living with dementia as a younger person
- Treatment for people with young-onset dementia
Young-onset dementia
Getting a young-onset dementia diagnosis
Getting an accurate and timely diagnosis of dementia is important. However, for younger people it can often take much longer. There can be specific reasons for this, including:
- Young-onset dementia is less common and health professionals may not have much experience of seeing the symptoms in a younger person.
- Early symptoms can be hard to recognise or not obvious. They might be put down to much more common causes such as stress, difficulties with relationships or work, or the menopause.
- Younger people are less likely to be memory loss, and are more likely to experience changes in language, vision, behaviour or personality.
Diagnosing a younger person with early symptoms of dementia can be very challenging and even specialists don’t always manage to get it right first time.
On the whole, diagnoses of dementia tend to become more reliable as symptoms progress and the nature of the condition becomes clearer. An initial diagnosis of something else, such as depression or chronic stress, may need to be looked at again if symptoms evolve and steadily get worse over time.
If diagnosis is severely delayed, it can mean the person doesn’t get the support they need.
The assessment process
Assessment for possible dementia, including young-onset dementia, usually starts with a visit to the GP (see Assessment process and tests). They will do some quick tests and ask how long the symptoms have been going on for and whether they’ve been causing problems with everyday life. If they think dementia could be a possible cause of these symptoms, they will make a referral to the local memory service. These are specialists in diagnosing dementia.
Some areas have specialist services for diagnosing younger people with dementia. The GP should refer a person to this service if it is available locally.
The assessment process often includes:
- Taking a full history of the person’s symptoms, any changes they’ve experienced and the impact of these on day-to-day activities.
- Tests of a person’s mental abilities, behaviour and ability to do daily tasks.
- A full physical exam.
- At least one brain scan (often with more specialist scans).
- Looking at other health conditions and how these can be managed effectively.
The process might sometimes include a lumbar puncture, to collect and analyse fluid around the spine.
Why do I need a diagnosis?
A diagnosis may rule out any other conditions. It will also help you plan for the future. Find out more about getting an assessment.
Coping with diagnosis
If you’ve had a diagnosis of young-onset dementia, you might be feeling a range of emotions, especially if the news is recent. Some people can feel numb, while others may experience denial. There’s no right or wrong way to feel.
Coming to terms with a dementia diagnosis can take time. But there are some things you can do now to help.
Telling people about your diagnosis
After your diagnosis, you may not be sure who to tell. It is natural to wonder how people will react. Some people may be supportive and understanding. Others may be confused or worried, or uncertain of what to say or do. For some, it can take a while for it to sink in.
Remember that you don’t have to talk about everything at once or feel responsible for managing other people’s reactions.
Some people might not know much about dementia. They might find it helpful to read about it, or watch the Dementia Friends video.
You may need to be clear about what support you need from friends and family. For example, you could ask for help in getting to the shops, or for someone to go round the shops with you.
Talking about your diagnosis with family and friends can bring you closer together. It lets people understand what you’re going through, making it easier for them to support you. Being able to share what’s on your mind can make things feel a little less overwhelming.
Some people may struggle to accept that you have dementia. You may need to explain how the condition affects you – especially if your dementia doesn’t cause memory problems. Despite this, they may still need time to adjust.
If people spend less time with you, or stop seeing you altogether, focus on your own needs. Remember that this is not your fault. Surrounding yourself with understanding people is important.
Our Dementia Support Forum is a welcoming, non-judgmental community for anyone who needs it.
If you have young children, grandchildren or other young people in your life, it’s important to talk to them too. It’s natural to want to protect them, but they are often more aware of changes than they may let on.
Giving young people information about dementia and what will change allows them to understand and adjust to the new situation. This can be reassuring for them and it can help you feel more understood.
Show that you are open to talk when they are ready. Ask them about their feelings, and allow them time to say how the changes are affecting them.
Our Easy Read booklets use simple words and images to explain dementia. They may be helpful for young children.
For many people, talking to friends and family helps them come to terms with their diagnosis. Some people find it easier to talk to someone else, such as a professional. If you don’t want to talk, you might find it helpful to write down what you are thinking now for when you are ready to talk.
You might also find it helpful to talk to:
As you need more support, you will most likely need help from different health and care professionals. Here is a list of some of them and the ways they can help you.
Doctors
Your GP can support you by:
When visiting the GP, you may want to take someone with you to listen and take notes.
If you are experiencing mental health problems, such as depression and anxiety, you can get a referral from your GP to see a clinical psychologist or psychiatrist.
They can also help if you are struggling with other mental health symptoms of dementia, such as hallucinations (seeing or hearing things that aren’t there).
Social care professionals
Social workers and carers can help you to adjust to life with dementia. Social workers assess your needs and advise on the best way to support you. Professional carers can help with practical, everyday tasks such as laundry, meals, washing and dressing, and taking medication.
Other health professionals
These include:
It’s easy to get caught up in medical appointments and big decisions. However, the basics of looking after yourself are just as important when coming to terms with a diagnosis.
It’s important that you give yourself the time and opportunity to express your feelings. Think about what feels comfortable for you. This could be talking to someone, writing in a diary, or finding meaning and purpose in faith.
Remember your emotions can change over time, as you learn more about dementia and find ways to adjust.
If you continue to feel sad, hopeless or anxious, talk to your doctor.