As a family caregiver of someone who has been diagnosed with young onset dementia, you are invited to participate in a research study entitled Family caregivers' experiences of financial consequences related to young onset dementia.

Researcher(s):

Megan O’Connell, Ph.D., R.D.Psych
Clinical Psychologist, Rural and Remote Memory Clinic; Associate Professor, Department of Psychology
Email: megan.oconnell@usask.ca; Phone: (306) 966-2496.

Melanie Bayly, Ph.D.
Postdoctoral Fellow, Rural Dementia Action Research (RADAR) team, Canadian Centre for Health & Safety in Agriculture

August Kortzman, B.A.
Graduate Student, Department of Psychology

Purpose(s) and Objective(s) of the Research:
• Being diagnosed with young onset dementia poses a number of challenges for the persons with dementia and their families. One of these challenges may be negative financial consequences related to the dementia, as a result of employment restructuring, loss, or early retirement on the part of the person with dementia and/or family caregiver/s. 
• The objectives of this research are to better understand:
1) The financial consequences experienced by families of persons with young onset dementia;
2) How these consequences impact on wellbeing and quality of life; and
3) The supports and resources that can help families cope with these challenges.

Procedures:
• You will be asked to share your story, in written form, of young onset dementia and any related financial consequences you and your family have experienced. Please feel free to share as much information as you would like about your experiences. In addition to sharing your story, you will asked to provide some demographic information and be presented with several additional questions focused on emotional well-being and coping.
• The amount of time it will take you to participate will depend on how many details you share with us, but we anticipate that most people will spend between 30 minutes and an hour sharing their story and answering the questions.
• If you have any questions about your participation in this study, please feel free to contact the researchers using the info provided above.

Potential Risks:
• There are no known or anticipated risks to you by participating in this research. Although you may experience some negative emotions discussing your experiences with young onset dementia, these emotions are unlikely to be more negative than those experienced at other points during your day-to-day life. If you are experiencing current difficulties with your mental health or require additional emotional, social, or functional support with dementia-related challenges, we urge you to contact your family physician or local Alzheimer’s Society who support all families, not just those diagnosed with Alzheimer disease. Please refer to the Alzheimer Society of Canada for more information about young onset dementia:
http://www.alzheimer.ca/en/Home/About-dementia/Dementias/young-onset-dementia
Potential Benefits and Compensation:
While there is no direct compensation for participating in this research, many individuals feel positively about sharing their experiences with others. This research will contribute to our understanding of financial consequences related to young onset dementia. This is important to providing the basis for policy changes and other initiatives to better support families of persons diagnosed with young onset dementia.

Anonymity and confidentiality:
• Since this survey is online, you will be anonymous (no one will know who you are including the researchers). An exception to this anonymity would be if you contacted the researchers directly using your personal email, in which case it would be deleted following the correspondence. Because the primary researcher works with individuals with atypical and often young onset dementias, it is also theoretically possible that she has interacted with your family member diagnosed with dementia and could recognize them if you use their full name in your written story. In the unlikely event this occurs; the person’s identity would be kept strictly confidential.
• Although data will be presented about the group of participants overall, we may use direct quotations from participants’ stories in the presentation of data. Any quotations that include a name will be replaced with pseudonyms. An exception to participant anonymity may be the specific information within the quote; as such, you will have be given the opportunity to provide consent to have your direct quotes used. 
• All data will be stored securely on the researchers’ password protected computers for a minimum of 7 years. Survey data will be stored on Survey Monkey, a company whose data is securely stored in Canada, and is funded by the University of Saskatchewan psychology department.

Right to Withdraw: 
• Your participation is voluntary and you can answer only those questions that you are comfortable with. As you are answering questions you may withdraw from the research project for any reason, at any time, without explanation or penalty of any sort by closing your internet browser.
• Because your data is anonymous (we do not know who it belongs to), it is difficult to withdraw your data once submitted.

Follow up:
• To obtain results from the study, please contact any of the researchers at the contact information listed above.

Questions or Concerns: 
• If you have any questions or concerns please contact the researchers using the information at the top of this page.
• This research project has been approved on ethical grounds by the University of Saskatchewan Research Ethics Board on March 13, 2018 (Beh# 17-423).  Any questions regarding your rights as a participant may be addressed to that committee through the Research Ethics Office ethics.office@usask.ca (306) 966-2975. Out of town participants may call toll free (888) 966-2975.

Consent
By selecting the “Continue” button below and completing this questionnaire your free and informed consent is implied and indicates that you understand the above conditions to participate in this study.

Please consider printing this page for your records.

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