STUDY FAQ

What is young onset dementia?

Young onset dementia, also called early-onset dementia, refers to dementia that develops in people under the age of 65.

What does participation involve?

Eligible participants will be asked to participate in two interviews, about six months apart. Interviews will last between 30 minutes and 2 hours, and will be conducted at a time and location that is convenient for you.

Participants who have dementia may choose to have shorter interviews, and they may also bring along a family member or friend.

What are interviews like?

The interviews will be conversational, and they will be guided by open-ended questions. Every interview is different, all answers contribute to our knowledge, and there are no correct answers.

Participants who have dementia will be asked to talk about their experiences of dementia and any services they have used. For example, they will be asked about their symptoms, taking cognitive tests, getting a diagnosis, and taking part in programs such as support groups. We also want to know what kinds of information and supports are important for people with young onset dementia.

Interviews with family members will explore the onset and progression of the illness, the process of obtaining a diagnosis and accessing services, and the impact on the family.  At the end of the interview, participants will also be asked a brief series of demographic questions such as age and marital status.

Confidentiality

Information gathered in this research study may be published or presented in public forums; however your name and other identifying information will not be used. You will only be referred to by a study number.  Any information that includes your real name will be stored in a locked file cabinet or on a password protected computer at the University of Manitoba that only the study team can access.

Possible Risks

There are some possible risks to taking part in this study. Some topics might be upsetting or cause you to feel distressed. It is important to know that you do not have to answer any questions that you don’t want to, and you can stop the interview at any time.

Possible Benefits

There may be a short-term benefit of having the opportunity to talk about your experiences. In the long-term, we hope that the information learned from this study will help to make policies and services that better support people living with young onset dementia and their families in Manitoba.

Who has reviewed the ethics of this study?

This study has been approved by the Health Research Ethics Board at the University of Manitoba. For questions about your rights as a research participant, you may contact the Health Research Ethics Board at 204-789-3389.

More Information

For more information about the study, please download the Participant Information and Consent Form for People Living with Dementia or the Participant Information and Consent Form for Family Members.