Simple guide to research

This introductory guide is to help you find and understand research on young onset dementia.  We want to make sure that the research is easy to read and digest.  We hope this results in the research and its conclusions being used well to develop good support.

The Young Dementia Network research group collaborated with other experienced academics and researchers to  develop this basic guide.

What is research?

The systematic investigation into and study of materials and sources in order to establish facts and reach new conclusions.

Topics of research

Cure and care.  Research is often divided into two types.  Research on cure and research on care.

Research on cure is often laboratory based.  It is about finding out what causes the many forms of young onset dementia.  It aims to develop drugs to slow, halt or reverse progression.  For example clinical trials of disease modifying therapies, genetic studies.

Research on care is about what can help people with a diagnosis and their families to ‘live well’ with dementia.  It aims to develop interventions that are helpful and supportive and find better ways of targeting and delivering services.

Funding for research projects

To carry out research, researchers in universities and in the national health service need to attract funding by bidding to funding bodies.  This is a competitive and lengthy process.  It may take a minimum of two years to get a project from the idea to the start date, and that is if the bid is successful.

Funding comes from a range of organisations. Key are the UK Research Councils and the National Institute for Health Research.  There are also charitable bodies and foundations.  The main charitable body that funds cure research on dementia is Alzheimer’s Research UK.  The main charitable body that funds research on prevention and care, as well as funding on cure, is the Alzheimer’s Society.

Find out about current projects funded by the different funders on their websites:

Alzheimers Research UK
Alzheimer’s Society
Alzheimer’s Society Research Network
CHAIN – Contact, Help, Advice and Information Network –  an online international network for people working in health and social care.
Economic and Social Research Council
Medical Research Council

What sort of learning has come out of research?

• How young onset dementia can progress
• Ways to reduce risk of getting young onset dementia
• Where, when and how genetics might be involved
• ​There are not enough age appropriate support services for people with young onset dementia
• ​Diagnosing dementia can take twice as long when the person is under 65 years old
• ​Young onset dementia is misunderstood

How you can get involved

​For more information about current studies please visit Join Dementia Research

How to access past research papers

Go to Google Scholar – this is a research search engine.

Enter ‘terms’ (ie words that describe the research that you want to find) into the box.  For example ‘young onset dementia’

Click on the small blue search button and all of the research papers Google can find will appear on your screen.  Under the search ‘young onset dementia’ Google Scholar came up with over 650,000 results when we checked in April 2021!