My apologies for accidentally scheduling this piece to appear a day earlier than intended. Most of the content above the fold remains the same; there is now, however, a little content below the fold. - GH
On Wednesday, 3 Aug 2011, I posted a piece called CareGiving Kos: Questionable Findings in Care-Giver Study which identified and called out a brief article that spoke about a recent caregiver study. The full study had appeared in The Gerontologist behind a subscription wall, so we were unable to read it directly.
Fortunately, one of the members of CareGiving Kos was able to read through it, and posted an initial comment with the suggestion that we reach out to the study authors for more information. (Thank you, Chance the Gardener.) Here's the comment by Chance:
the full article is more nuanced
First off, thank you GreyHawk for exploring these important issues as you do.
I have only skimmed over the full article in the Gerontologist (subscription required), but the story here is more nuanced than the press release (and that Stone Hearth News piece is simply the Penn State press release).
From above:
The first excerpt I'd provided from the article mentioned "one question focused on the level of importance a dementia patient gave to the ability to spend his or her own money in the way he or she wants." What degree of autonomy - and what level of dementia - did the researchers use for their base levels?
The researchers used a multilevel model that controlled for global cognitive functioning. Autonomy was modeled as a dependent variable, measured as a scale:
The Values and Preferences Scale (Whitlatch et al., 2005b) consists of 37 items that assess the IWD’s values and preferences in care. In line with dyadic perspectives, both caregivers and IWDs rated the importance of IWD’s values and preferences in care. Items were rated on a 3-point scale ranging from 1 (not at all important) to 3 (very important). An exploratory factor analysis was performed to determine naturally occurring scales. In accordance with a person-
centered perspective, we used the IWD’s reports in this analysis. Thirteen items were dropped because they had little variance (i.e., over 80% of respondents endorsed one answer choice) or had factor loadings <.40. The analysis yielded seven factors: autonomy, burden, control, continuity, family, safety, and quality of care. Comparable scales were then constructed with caregiver reports, and the internal reliabilities were examined using Cronbach’s alpha.
I think you should probably invite the lead author (whom I don't know) or Steve Zarit (the senior author) to be interviewed as part of Caregiving Kos. He's a great guy, and I'm sure he'd be interested in explaining his research more (better than my quick and dirty defense of it here).
"The government is us, you and me." - TR #GeroAmericano
by Chance the gardener on Wed Aug 03, 2011 at 12:13:15 PM EDT
I reached out to Allison Reamy, who was listed as the point person for contact regarding the study, and she got back to me pretty quickly.
I've got another email out to her regarding how to cite and what can be included (she sent me a complete copy of the article that was behind the subscription pay wall that I'm hoping to quote from), so look for some good feedback soon.
In the meantime, use this as an Open Thread for CareGivers and CareGiving.
Allison's response is below the fold, and she hopes that we will continue to read and discuss such work in our own efforts to understand and become more informed care-givers - for ourselves, our families and our peers.
We'll still use this as an open thread to discuss issues and bring up new topics, so please chime in.
Namaste.
Ok - here's the message I received from Allison:
ALLISON M. REAMY to GreyHawk Aug 5 (5 days ago)
Dear GreyHawk,
Thank you for your e-mail; we appreciate your interest in this topic and our work. Perhaps what would be most meaningful would be for me to include the full text article for you to read and to provide a bit more description on what the full study found.
Overall, as stated in our abstract and discussed in the paper, we used the statistical procedure of multilevel modeling to investigate what factors are associated with discrepancies in how the care receiver (an individual with mild to moderate dementia) and their caregiver see the care receiver’s values and preferences in daily care. In running these analyses, we find that caregivers reported less importance on 5 scales of values (autonomy, control, burden, family, and safety), than what the individual with mild to moderate dementia self reported.
Further, of interest, when we look at what sorts of characteristics or factors are associated with this occurrence, it is not the individual with dementia’s cognitive ability (except in the case of the value of avoiding being a burden), but rather the caregiver’s perception of how involved he or she views the care receiver to be in daily decision making that is associated with not seeing the same level of importance of the individual with dementia’s values as the individual does.
This latter finding in our data indicates that caregivers that view their relative as more involved in daily decision making about care, are more likely to report higher level of importance of a value than the individual with dementia would self report. Conversely, in the case when the caregiver perceives the care receiver as less involved in daily decision-making, the caregiver reports less importance of a given value than what the individual with dementia reports. So, if a caregiver sees his or her relative as not involved there is an association with also seeing his or her relative’s values as less important. We explore some hypotheses on why this might be happening in the article’s discussion section.
The only other factor we found to be related to discrepancy in perceptions was caregiver race on the values of control and burden. In this, as stated in the paper, African American caregivers (as compared to non-African American caregivers) were more likely to report greater perceived importance of the value for individuals with dementia than the individual with dementia self-reported.
These finding discussed in the paper are couched in a larger frame of understanding care processes in the caregiving dyad and ultimately advocates for assessments of value and preferences of the individual with dementia, in addition to the caregiver’s beliefs about care. Given the complexity of issues in caring for an individual with mild to moderate dementia, there is perhaps a need for further communication around the elder’s values to help inform the caregivers, family members, and professional caregivers alike, as they step in to the role of surrogate later on, acting in their best interests.
We hope that this helps to clarify some of the findings discussed in the press release, and that you will continue to read and discuss such work.
Thank you,
-allison reamy
Allison M. Reamy, M.S.
Ph.D. Student
Human Development & Family Studies
The Pennsylvania State University
Henderson South 208
[email address withheld]
As you can see, Allison took the time to provide a little more insight into their study & the results. I intend to read through and attempt to understand their report, and then update folks here regarding it.
It's been very interesting to read the comments that came in so far (given that I accidentally published this a day early), and I'm very glad all of you have been participating.
Peace.