Understanding the dementia diagnosis
You may feel shocked, relieved, overwhelmed, upset or maybe a mixture of those feelings when someone you support is diagnosed with dementia. Whatever your feelings about dementia and supporting someone living with dementia – their diagnosis is the first step in moving forward with dementia.
Having a name for the disease can help you to understand the changes you’ve noticed in the person you support. Knowing more about dementia and how it effects a person helps you know what to expect, what you can do to support the person and how to look after yourself too.
Many people with dementia and their carers live meaningful, full lives after diagnosis. People with dementia and their carers have shared their good and bad experiences with us and the challenges they’ve faced and solutions they’ve used. This is combined with up-to-date research. This information will help you choose your own path forward with dementia.
Carers of people with dementia found the following actions helped in their first year after diagnosis. You don’t have to take all of these actions and there is no correct order.
- Understand the diagnosis – this will help you to make sense of what the person you support is going through.
- Manage your feelings – your feelings about the dementia diagnosis can sometimes get in the way of you adapting to life with dementia.
- Support the person with their symptoms – there are strategies and treatments which can help with the symptoms of dementia.
- Live your life – supporting someone with dementia can sometimes take a lot of time and energy, but your life doesn’t need to stop.
- Plan ahead so you stay in control – plan for now and the future and know what support and services can help you and the person you support.
Understanding the type of dementia will help you adjust and plan for both the present and the future
Start your own dementia toolkit
Dementia describes a group of diseases which affect the brain. The person you support may experience difficulties with their memory, thinking, speech, behaviour, emotions and changes in managing everyday life.
The diseases which cause dementia can be thought of as ‘weeds’ which are overgrowing the brain. Like an overgrown path, these ‘weeds’ make it hard for messages to get through between different parts of the brain. Medications and non-drug treatments, such as cognitive stimulation (a type of brain training), can help cut a path through the weeds so that the messages can get through more easily.
Click on the common dementia types to find out more:
- Alzheimer’s disease
- Vascular dementia
- Fronto-temporal dementia
- Dementia with Lewy Bodies
- Mixed dementia
You can also find out about rarer types of dementia here.
Each type of dementia affects the brain differently. Take a dementia brain tour to find out how your brain might be affected.
Many treatments for symptoms tend to work for all the dementia types. However, dementia medication does depend on your type of dementia. Find out more about treatments in Dealing with symptoms and changes of dementia.
Sometimes doctors can’t tell the difference between types of dementia, so can’t tell you what type of dementia you have.
Action: if you are interested in understanding more about how different parts of the brain might be affected by dementia, take a dementia brain tour .
Ask your doctor for specific information about dementia
Carers told us that when they were told the person they support has dementia, they found it difficult to take in any other information at that appointment. Some carers told us that they didn’t get enough information at that appointment, or were given so much information they were overwhelmed. You may not have been there when the person you support was given their diagnosis. Either way it is important to have a chance to ask questions about the diagnosis.
Carers and people with dementia recommend making a follow-up appointment to find out more about the particular type of dementia and ask questions. If you can’t get a follow-up appointment with the doctor who gave the diagnosis, then make an appointment with your general practitioner (or the person with dementia’s GP).
Ask the doctor to:
- Explain the results of the investigations they used to diagnose dementia (such as brain function tests, brain scans and blood tests). This can help you to understand the changes you’ve noticed in the person you support.
- Highlight which symptoms they think are important – what may cause problems and what the person can continue to do in their day to day life.
- Give you advice on how you can support the person with dementia and care for yourself too.
Doctors won’t be able to talk about their patients without their consent. Doctors generally won’t take phone calls from family members as they can’t know exactly to whom they are talking. It is usually best to plan a visit to the doctor together with the person with dementia. It is good to speak to the person with dementia and agree if you can be contacted about their medical care in the future if it is needed.
We have put together a list of questions that carers often ask their doctor about dementia diagnosis – questions about a dementia diagnosis . You might find this helpful as a starting point for the questions you’d like to ask your or their doctor. Print out the question sheet and add your own questions so you can ask the doctor at your next appointment.
Get trustworthy, up-to-date information about dementia
Some carers want to get as much information as possible, others prefer to focus on just what they need to know right now. Choose what information you need, and in what form. We provide some suggestions below.
Read online materials about dementia
The Alzheimer’s Society has many useful factsheets about dementia.
‘iGeriCare’ a website developed by McMaster University in Ontario, Canada has a series of 20-30 minute video lessons on a range of topics about dementia
You can print or read online booklets on the topics of Introduction to Dementia, The Dementia Compass, and Later in the Dementia Journey by the Horizon Health Network in New Brunswick, Canada.
Read books about dementia
The Alzheimer’s Society suggests a range of books about dementia. Some of these include personal stories by people living with dementia.
Listen to a podcast about dementia
The Dementia Dialogue podcast series features people with dementia and carers talking about their experiences adapting to and living well with dementia. Check out Season 1: Mapping the Dementia Journey.
Talk to a dementia professional by phone
Dementia Connect Support Line is available seven days a week. You can talk to a dementia advisor for personalised information, support and advice by calling freephone 0333 150 3456
You can also talk to an Admiral Nurse for information, advice and support. You can call their free helpline seven days a week. The free helpline number is 0800 888 6678
Go to an education or support group
Support or education groups are another way to learn more about dementia. They provide the opportunity to meet other people who are going through a similar experience. You can ask questions and discuss issues over time.
Visit or Call the Alzheimer’s Society Dementia Connect Support Line Dementia Connect support line | Alzheimer’s Society (alzheimers.org.uk) for information about local face to face support groups and educational events.
Do an online course about dementia for the public
There are many free courses that you can access online:
- The University of Derby has a general course – Bridging the dementia divide.
- University College London offers a course on less common causes of dementia like Lewy Body and Frontotemporal dementia – The many faces of dementia.
- The University of Tasmania offers free, online 7-week courses about dementia for people living anywhere in the world.
Carers, family members, friends and people with dementia find these courses helpful and enjoy completing them. The courses, known as Massive Online Open Courses or ‘MOOCS’, offer quality information and you can interact online with your lecturers and others doing the course.
Futurelearn also host a range of free MOOCs on dementia which you may find interesting and helpful.
Help the person I care for find support
There are support groups especially for people living with dementia. It can be helpful for the person to interact with and receive support from their peers. Dementia Alliance International (DAI) runs online peer support groups and educational webinars for members around the world. Membership is free for people with dementia.
Ask your doctor
Ask your doctor more about your dementia symptoms and treatment and support options. Use our list of Frequently Asked Questions.
Call Dementia Connect
0333 150 3456 for free for personalised information, support and advice from trained professionals.
Speak to an Admiral Nurse by calling the Dementia UK free helpline on 0800 888 6678