When people develop a condition, such as dementia, they can respond to the changes they experience in very different ways. The findings from research in other health conditions suggests that how people understand their condition, its implications, and what can be done about it can have an impact on how people adjust to and cope with their condition. We want to understand how people respond to and cope with having dementia so as to improve the support available to people with dementia.

What are the main aims of the study?

Dr Catherine Quinn, researcher for this study

Dr Catherine Quinn, Chief Investigator for this study

We have developed a new questionnaire to explore how people understand and adjust to having changes in memory, other thinking abilities, or the ability to manage day-to-day activities. Before we can make the questionnaire available for others to use we need to validate the questionnaire. This is important as we need to check that the questions in the questionnaire fit with people’s experience. We also need to check that that the questions make sense, are easy to understand, and elicit consistent responses.

What does it involve for a participant?

Participants will be asked to complete the questionnaire which should only take 10-15 minutes to complete. We will either send participants the questionnaire to fill in and return to us (we will provide you with a stamped addressed envelope), or they can complete the questionnaire online.

Participants will be asked to complete the questionnaire on two occasions (three to four weeks apart). This is so that we can explore whether people respond to the questions in a consistent way or whether their responses change over time, which helps us to check the reliability of the questionnaire.

How long is the study for?

Participants will need to complete the questionnaire on two occasions over a three to four week period.

What do you hope the outcomes of the study will be?

Once we have made sure that the questionnaire is reliable (that it is fit for purpose) we will make it available so that others can use it. This questionnaire will be helpful to researchers and NHS staff, such as doctors and nurses, who could use it to find out more about how people understand and are adjusting to their condition. This could make it possible for them to provide more tailored information and support to people.

We will also use the questionnaire in further research to help us understand more about how people make sense of and adjust to the condition and how this affects their ability to live well with dementia.

Where is the study based?

The study is based at the University of Exeter but we are recruiting throughout the UK.

Who can take part in the study?

We are currently looking for participants with a diagnosis of dementia or Alzheimer’s disease.


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You can see if you are eligible for this study, as well as others around the nation, by logging into your Join Dementia Research account.

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