California State University, Dominguez Hills: Consent to Act as a Research Subject

Relationship Between Engagement in Meaningful Activities and Caregiver Burden in Persons with Dementia

You are being asked to participate in a research study. Before you give your consent to volunteer, it is important that you read the following information and ask as many questions as necessary.

Investigators: The investigators of this case study are Tim Nguyen, who has a Bachelor of Science Degree in Kinesiology from California State University, Long Beach, Briana Salcido, who has a Bachelor of Science Degree in Psychology from Azusa Pacific University, and Leilua Satele, who has a Bachelor of Science degree in Kinesiology from California State University Fresno. The person supervising the research is Eric Hwang, PhD., OTR/L. We are all working within the Occupational Therapy Masters Program in the School of Health and Human Services Department at California State University Dominguez Hills.

Purpose of the Study and Participant Inclusion Criteria: The purpose of the study is to examine the relationship between level of engagement in meaningful activities and caregiver burden. A minimum of 80 participants will be recruited from through the Alzheimer’s Association of Orange County. The participants must be caregivers of a person with dementia for at least six months, between the ages of 18 and 80, proficient in the English language, and the person with dementia must be living.

Description of the Study: The study will be conducted as an online survey using With the online survey, an “electronic consent” will be adopted. The electronic consent will include this form (Form D) in the survey link. Participants can also be mailed the survey, have it completed, and mail it back to the co-investigators. Participants will complete a questionnaire regarding demographics, caregiver burden, and level of participation in meaningful activities for the individual with dementia being cared for.

Risks or Discomforts: Because of the personal nature of the questions that will be included in the questionnaires, you may reflect on unpleasant memories. If you begin to feel uncomfortable, you may discontinue participation at any time, either temporarily or permanently, and it will not affect your relationship with the researchers.

Benefits of the Study: The subjects may experience relief in answering questions about their caregiving experience. This may benefit persons with dementia and their caregivers because if higher levels of engagement are correlated to lower levels of caregiver burden, persons with dementia can experience more meaningful engagement and caregivers can experience less burden. This could benefit occupational therapists as they can educate the caregivers on how to facilitate engagement in meaningful occupation (the aim of occupational therapy) and thereby reduce caregiver burden. There is no guarantee, however, that you will receive any benefits from participating in this study.

Confidentiality: All of the obtained questionnaires will be kept either on a password-protected computer drive for electronic copies or a private folder for hardcopies that will be used exclusively by the researchers. Only the investigators and the supervisor of the research will have access to any and all information pertaining to this research. Confidentiality will be maintained to the extent allowed by law. Threa

* 1. Electronic Consent: Please select your choice below

*Your clicking on "yes" below indicates that: You have read the above information and have had a chance to ask any questions you may have about the study, you agree to be in the study and have been told you can change your mind and withdraw your consent at any time, you meet the inclusion criteria for the study

Your clicking on "no" below indicates that: you do not wish to partcipate in this study 


* 2. Caregiver gender:

* 3. Race (check all that apply) 

* 4. Age:

* 5. Relationship to Individual With Dementia: 

Individual With Dementia 

* 6. Gender:

* 7. Age:

* 8. Years since diagnosis: 

* 9. Household Income:

Activity Participation

* 10. How often has your loved one with dementia "actively" participated in the following activities in the past three months? 

*Note: "Active participation" means that your loved one (a) is able to perform the activities mostly on his or her own, OR (b) shows initiative, motivation, or interest in participating in the activities even if you, as a caregiver, need to provide assistance during the process

  Never Seldom Sometimes Often Always
Grooming, Bathing, or Showering
Putting on Clothes
Meal Preparation and Cleanup
Eating and Drinking
Home Management and Maintenance (e.g; repair, cleaning)
Outdoor or Community Activities and Events
Religious and Spiritual Activities
Socializing With Friends or Relatives (visiting or chatting)
Taking a Walk Outside (At least 10 minutes)
Exercise or Sports
Shopping at a Grocery Store or Shopping Mall
Watching or Listening to Favorite TV Programs or Radio Stations
Dining Out With Family or Friends
Hobbies (e.g; arts, crafts, gardening, etc.)
Vacation (e.g; camping, traveling, resorts, etc.)
Taking Care of Grandchildren (babysitting)
Taking Care of Pets
Zarit Caregiver Burden Scale 

* 11. The following questions reflect how people sometimes feel when they are taking care of another person. After each question, select how often you feel that way: never, rarely, sometimes, frequently, or nearly always. There are no right or wrong answers.  

  Never Rarely  Sometimes Frequently Nearly Always 
1. Do you feel that your relative asks for more help than he or she needs?
2. Do you feel that because of the time you spend with your relative, you do not have enough time for yourself?
3. Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or for work? 
4. Do you feel embarassed over your relatives behavior? 
5. Do you feel angry when you are around your relative?
6. Do you feel that your relative currently affects your relationship with other family members or friends in a negative way?
7. Are you afraid about what the future holds for your relative? 
8. Do you feel your relative is dependent on you? 
9. Do you feel strained when you are around your relative? 
10.  Do you feel your health has suffered because of your involvement with your relative?
11. Do you feel you do not have as much privacy as you would like, because of your relative?
12. Do you feel that your social life has suffered because you are caring for your relative?
13.  Do you feel uncomfortable about having friends over because of your relative?
14.  Do you feel that your relative seems to expect you to take care of him or her, as if you were the only one he or she could depend on? 
15.  Do you feel that you do not have enough money to care for your relative, in addition to the rest of your expenses? 
16. Do you feel that you wil be unable to take care of your relative much longer? 
17. Do you feel you have lost control of your life since your relatives illness? 
18. Do you wish you could just leave the care of your relative to someone else? 
19.  Do you feel uncertain about what to do about your relative? 
20. Do you feel you should be doing more for your relative? 
21.  Do you feel you could do a better job in caring for your relative? 
22. Overall, how do you feel in caring for your relative? 
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