HDSA has an initiative - a survey to help develop a caregivers guide. Interesting approach - three surveys: one each for early. mid and late stages. From the south of Maryland, we answered the late stage survey: questions are first asked from the pHD perspective, then respondents are asked to discuss "strategies" and then use of HDSA products/services.

Go to the HDSA web site and do it - at least they are asking for our input.

[hdsa.org]

Fred Lothrop

Fred,

Are you feeling OK?

Will

I just finished and found the questions and responses not relevant to the other.
it was only a couple pages after the personal stuff
the "suvivoir guilty" questionair made absolutely no sense

yeah Will i be okay

just want to see where the ivory tower will go with this. the question in my mind, will they invent something new, rehash of what has been done by other non-profits or is this another misguided me too effort. in any case it is worth the ten minutes effort to support what ever they are trying to do. who knows maybe they will come up with a silver pill we can take in the morning and the rest of the day will "normal".

time for the day to begin

I don't think I took the same survey you discribed.

after a couple pages of background infromation, all the survey asked about was the emotional attitude of the caregiver (and as I said the questions and the provided responses did not match. the last page being so confussing, I just had to choose the center response , don't know)

Ah well - guess care givers will have to continue to do what they do, provide best quality of life for their pHDs they can without guidance or interference from the ivory tower

somewhere in my feeble mind, i think there are two surveys out there on care giving -
one to support research being done by a graduate student which, based on a standardized approach to assess stress and the like, asked for a bunch of background info
two the one from the ivory tower as part of an effort to develop/prepare a how to for HD community

I searched and could not find the #2 survey. if you have a better link, I would try it.

as for the 1st (the stress survey), I recall it stated you will find the questions could cause distress and at the end it would provide support....that support was a link to HERE!

Will,

Appears two surveys may well be one. Jean Logan sent out an alert, including a letter/notice from HDSA that HDSA had a grant to develop/prepare a DIY HD Caregivers Guide. The HDSA letter had links that went to three flavors of a survey gathering data for the Guide.

On the Ivory Tower site, under research down to surveys, Jamie Graziano and her graduate research study is discussed. No mention of DIY guide. But, a link to a survey supporting the research.

And, that is where I got confused that there may be two different surveys. hard for me to sort them out based on the information on the HDSA. Or, maybe HD is contagious?

Fred