1.1 Understand your dementia diagnosis

A diagnosis is the first step in moving forward with dementia

You may feel shock, relief, upset or maybe a mixture of those feelings when you are diagnosed with dementia.  Whatever your feelings about your dementia diagnosis, your diagnosis is the first step in moving forward with dementia. 

Now you have a name for the disease, and an explanation of your symptoms this can help. Knowing more about dementia means you are able to know more about what to expect and what you can do.  

Many people with dementia live meaningful, full lives after their diagnosis.
We want to share with you what people with dementia have shared with us – their good and bad experiences, challenges they’ve faced and solutions they’ve used. Along with some information and practical suggestions we will help you find the information you need to choose your own path forward with dementia.  

People with dementia told us the following actions helped them in the first year after diagnosis. You don’t have to take on board all these suggestions and there is no correct order.  

• Understand your diagnosis: helps you to make sense of what you are going through.
• Manage your feelings: feelings about having a diagnosis of dementia sometimes get in the way of adapting to dementia. Understanding these feelings can help.
• Manage your symptoms: there are strategies and treatments which can help with the symptoms which bother you.
• Live your life: life doesn’t stop because you have dementia. An active and social lifestyle may improve brain health.
• Plan so you stay in control: plan for now and the future and know what supports and services can help.

Understanding your type of dementia will help you adjust and plan

Dementia describes a group of diseases which affect the brain. It may be helpful to think about dementia as a condition which changes how your brain works, leading to changes in how you think, feel and what you do. To get a diagnosis of dementia, your doctor will have found that you’re having difficulty with things such as changes in your memory, thinking, the way you act or the way you feel which make it harder for you to go about your daily life. Find information below from the Alzheimer’s Society about specific types of dementia. 

Click on the common dementia types to find out more about them:

• Alzheimer’s disease
• Vascular dementia
• Fronto-temporal dementia
• Dementia with Lewy Bodies
• Mixed dementia

You can also find out about rarer types of dementia

Each type of dementia affects the brain differently. No one is affected in the same way. However, there are some similar factors and you can check out a visual map of the brain and take a tour and find out how your brain might be affected

Many treatments  to help you with symptoms you may have tend to work for all  dementia types.  However,  eligibility for dementia medication does depend on your type of dementia. Find out more about treatments in Dealing with memory and thinking difficulties.

Sometimes doctors can’t tell the difference between types of dementia, so you can have a dementia of more than one type or of a mixed type of dementia.

Ask your doctor specific information about your dementia

Some people told us that when they were told that they had dementia, they found it hard to take in or remember any other information at that appointment. Some people also told us that they weren’t given enough information. They recommend making a follow-up appointment to find out more about your particular diagnosis and to think about the questions you may want to ask. If you can’t get a follow-up appointment with the person who gave you a diagnosis, your general practitioner (doctor) may also be able to give you information about your dementia diagnosis.

We’ve put together a list of questions that people with dementia often ask their doctors.  The link is at the bottom of this page.  You might find this helpful as a starting point for the questions you’d like to ask your doctor – write them down so you don’t forget any during your appointment.

Get trustworthy, up-to-date information about dementia

Some people like to have as much information as possible, and others prefer to focus on what they need right now. Information about dementia can help you and those who support you to find out more about life with dementia. Choose what information you need, when and in what form.