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.
You can see current projects funded by the different funders at the following links:
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
What should you know when looking at research?
Good research needs to adopt an ethical approach as well as be designed and conducted well to give valid findings.
Research studies do not necessarily carry more validity if they have many participants. There are valuable results that have derived from qualitative studies.
Some basic terms are used to describe study designs and they are valuable in knowing how much to trust the findings.
When something is measured based on its quality. For example, how a person with young onset dementia feels after taking part in a new activity.
When something is measured by quantity. For example, how many people with young onset dementia took part in the new activity or how much effect the new activity had on quality of life.
There are different types of quantitative research designs. In the following list, the highest standard is at the top. There are many other designs that are not included here.
RCT – Randomised controlled trial
A study in which similar people are randomly assigned to two (or more) groups to test a specific drug, treatment or other intervention. One group (the experimental or treatment group) has the intervention being tested, the other (the comparison or control group) has an alternative intervention, a dummy intervention (placebo) or no intervention at all. To see how effective the experimental intervention is, the groups are followed up over time, and compared to see if there are differences between them. Outcomes are measured at specific times and any difference in response between the groups is assessed statistically to make sure it has not happened by chance. Random allocation to the groups is a good way to reduce bias.
In a controlled study, the treatment group is compared with a control group. Where differences are found between the groups at the end of the treatment, this gives some confidence that changes in the treatment group are a result of the new treatment. However, as the participants were not randomly assigned to the groups, there may be some bias.
A pre-test post-test design is a study where measurements are taken both before and after a treatment. The design means that you are able to see whether the sample of people treated improve. However, as there is no control group, the changes may not have been due to the treatment.
In this design, measures are only taken after the treatment or intervention. (For example, you might test knowledge at the end of a training course.) This design is relatively simple, but the knowledge may not have been gained from the course because there was no pre-measure.
Type of measures
Measures are the instruments used in a research study to assess variables of interest such as memory function, depression, quality of life, blood sugar. They can be medical measurements, survey questions, interview questions, self completed questionnaires, to name a few.
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!
Research and evidence
A collection of research focussing on the most prominent subjects relating to young onset dementia, gathered by members of the Young Dementia Network Steering Group and other experienced researchers