JOAN’S THUR/FRI BLOG – MARCH 22/23, 2012 – Caregiver Burnout Survey – A Chance to Help Other Caregivers

Our message boards are a safe place to vent, and lately they have been filled with stories of caregiver burnout. The only way to describe our burnout as Alzheimer Spouse caregivers to outsiders is to tell them to think about what is involved in caring for a toddler 24/7. Most people understand the amount of work involved in parenting a child of that age – especially keeping one step ahead of the trouble they can get themselves into. Now imagine your husband/wife as having regressed to that toddler stage, and our task becomes a little clearer to the outside observer. In the case of the toddler, he/she grows out of that stage, and there is always light at the end of the tunnel. In the case of our adult toddlers, they do not grow out of that stage – they regress even more, and there is no timetable for the end. It can last for 10 -20+ years. It is my opinion that the indeterminable length of our caregiving job is a big factor in our exhaustion and burnout.

As I was reading the message board posts of caregiver fatigue, I received an e-mail from Dr Siobhan O'Dwyer, a DCRC Postdoctoral Research Fellow at the Research Centre for Clinical and Community Practice Innovation at Griffith University in Australia. She and her team are doing research on dementia caregiver stress, and are looking for volunteers to fill out an online survey. There is no compensation involved for me or anyone taking the survey. It is simply a chance to vent your frustrations where they may be used to help researchers help other caregivers.

I asked Dr. O’Dwyer to explain the research to you herself, and I have posted her response below. Before asking anyone to participate, I made sure I took the survey myself. Although it took me 40 minutes to complete, there is a built in “resume” button, so you may do part of the survey with whatever time you have available, and then return to finish it at a later time.

Hello,

My name is Dr Siobhan O'Dwyer and I am a Research Fellow at Griffith University in Australia. My team and I are currently conducting research on the physical and emotional wellbeing of carers. If you currently provide care for a family member, friend or spouse with dementia, we would like to invite you to participate in an online survey.

The survey is completely anonymous and all responses are kept confidential. It includes questions about you and your background, the person with dementia's background, the type of care you provide, and the effect that providing that care has had on your physical and mental health. 

The survey is suitable for people who are caring at home, people who have placed the person with dementia into residential care, and people who have been recently bereaved (i.e. the person with dementia has passed away in the past two years).

 I have been a carer myself and I understand how precious your time is. I don't want this research to be another hassle in your life, so the survey includes a button which allows you to save your responses and come back later to complete the rest. You can save and return as many times as you need. To complete the survey, please click on this link
 https://prodsurvey.rcs.griffith.edu.au/dementiacaresurvey 

Your contribution will help us to develop programs and policies to better support vulnerable carers. The anonymous nature of the survey might also be an opportunity to express thoughts and feelings that you haven't been able to share with your friends or family. 

The findings will be distributed to community and advocacy organisations, governments, and the media, who we hope will use the information to better support carers and raise community awareness of dementia.We will also post a summary of the results here when the study is over.

Please note that this post has been approved by Joan and that the research has been approved by Griffith University's Human Research Ethics Committee. 

If you have any questions or concerns about the research, please feel free to contact me directly at s.odwyer@griffith.edu.au. I would be more than happy to discuss it with you personally.

Best wishes,
Siobhan 

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