Questions & Answers

About 15 older adults with memory concerns and/or their 15 family or friend care partners will take part in this study.

We seek both older adults’ and families’ viewpoints. But if you wish to interview alone, you are welcome to participate.

Older adult participants (65+) must:

– have a diagnosis of dementia 

– have lived with its symptoms for at least 6 months or so

– live in their own homes (but not in the care setting)

Family/friend care partner participants (18+) must:

– have been providing major care/assistance to the senior participant for at least 6 months or so

If you volunteer to take part in this study, the researcher will ask you to do the following. 

1. Complete a sociodemographic questionnaire. The researcher will ask you a few background information such as age, gender, living situation, and current health. The researcher will also ask you about your diagnosis. If you cannot recall, with your permission, I may ask someone else if you wish, for example, your family or family doctor. 

2. Take part in 1 or 2 interviews at a place and time convenient for you. Suggested places for interviews are your home or University of Calgary. During the first interview, I will ask you questions like “how have you been managing dementia?” and “what kinds of support would you need to access support programs?“. During the second interview, I will share my analysis with you so you can comment on them, correct any misunderstandings, or add more ideas. With your permission, I will audio record the interviews so that I can better remember our conversations. 

Participant recruitment and interview began in March 2023 and will continue until the end of the year (December 2023). 

There will be a total of 2 interviews. The 2 interviews can be scheduled 1 – 2 weeks apart for older adults, and 3 – 5 months apart for care partners.

There are no significant risks or harms to you as a result of your participation in the interview. Yet, discussing your health and illness experiences can uncover sensitive issues and might bring some negative emotions. You do not need to answer any questions that make you feel uncomfortable. If you feel upset during the interview, you can stop the interview at any time, take a break or re-schedule. If you feel that it would be helpful to talk to someone, we will provide you with free counselling contacts. 

There will be no direct benefits to you from participating in this study. Yet I hope that you will enjoy being interviewed, feel helpful to others, and feel empowered by having your voice heard. You may also get information about various support programs and resources in Calgary. 

Your participation in this study will help researchers to learn more about the topic. It may also help health care practitioners to provide better care and treatments in the future. Your opinions will help develop supportive programs that are easier to access for older adults who have dementia and improve their health and quality of life. 

You are free to choose not to take part in the study. Your decision will not affect any of the medical care you receive. 

Yes. This study is voluntary. You may withdraw from the study at any time without giving a reason. Tell the researchers if you are thinking about stopping or decide to stop. 

Study participants who withdraw from a research study have the option to withdraw their data as well. But it might be impossible to extract the interview data once it is incorporated into the analysis. You may request that your data be withdrawn for up to 2 weeks after the interview. 

There are no costs involved with participating in this study. You will not be paid for your participation. If you choose to come to the university for interviews, you will be reimbursed for parking and transportation costs up to $50.00. To be reimbursed, please save your receipts and provide them to the researcher. 

Yes. The researchers will do their best to make sure that your private information is kept confidential. All data will be stored in a password-protected data storage where only the research team has access. All personal information (e.g. names and numbers) will be deleted from data. No personal information will appear on any of the final reports. 

The researchers will keep the research data for 5 years after the completion of the study. All data and records will be destroyed afterwards. 

The research team: You may contact Jasmine Hwang and Tam Donnelly (principal investigator) at 403-919-2377 with any questions or concerns about the research or your participation in the study. 

Conjoint Health Research Ethics Board (CHREB): If you have any questions concerning your rights as a possible participant in this research, please contact the Chair, CHREB, University of Calgary at 403-220-7990. 

Results will be made available to all participants. I will share with you a link to publications and send you an invitation to presentations. Study findings will also be shared on this website. 

Taking part in this study is your choice.

1. You have a right to have all your questions answered before deciding whether to take part. 

2. Your decision will not affect the standard medical care you receive. 

3. If you decide not to take part, you may leave the study at any time.