I am working with a Japanese colleague to review literature regarding measurements and validation of scales used to measure caregiver burden. We are about done with the Japanese literature, but are going through the English literature. It is hard to determine if there is any particular scales that are preferred or how one might categorize the different scales. I haven't dealt much with these tools in the past and would appreciate the input from the community.
The State of California has a comprehensive caregiver burden assessment tool that utilizes and combines several validated tools. I like this document because it actually sites the peer reviewed articles/authors where the tools are from. It includes:
Revised Memory and Behavior Problems Checklist
ADAPTED ZARIT INTERVIEW (Bédard et al. 2001)
MEMORY AND BEHAVIORAL PROBLEMS (Teri et al. 1992)
CAREGIVER QUESTIONNAIRE (Radloff 1977)
Also, look at the Cohen-Mansfield "Agitation Inventory" with documents how often a person with dementia displays a disease related behavior, and then asks the caregiver to rank how stressful they find it to be.
Thank you Janelle. One of the reasons for review is to look at how Zarit has been used and adapted by researchers looking at caregiver burden specifically in cases of dementia. These are good places to start!
Have you looked at the NPI (Neuro Psychiatric Inventory) that also looks at the level of caregiver distress engendered by each of the neuropsychiatric disorders within dementia?
I am not sure if you have come across the following resources..
Modified Caregiver Strain Index (13 Items Scale)
Kingston Caregiver Stress Scale (10 Items Scale)
Sources
Segal-Gidan F, et al. Alzheimers Dement. 2011.
Azermai M, et al. Ageing Res Rev. 2012.
Waldemar G, et al. Eur J Neurol. 2007
Thank you everyone for your help. There were four main issues that I was interested in, and it appears from the literature that I have seen, no one study/measure attends to all four. They are: 1) examining particular characteristics that set informal caregivers apart from formal caregivers 2) examining both positive and negative aspects of caregiving (and any interaction) 3) examining cultural variables that support coping 4) examining the particulars of the caregivers of PWD.
My work is qualitative/ethnographic/phenomenological, so having these reviews is really helpful to fill in some gaps in my knowledge (the 2014 Ageing Research Reviews article by ven der Lee et al. is very good. thank you Canan!).