Early and distinguishing characteristics of Lewy body dementias (LBD) are associated with higher levels of LBD caregiver subjective burden, over and above the effects of typical stressors found in other types of dementia. Key factors in LBD caregiver burden included behavioral problems, an impaired ability to perform activities of daily living, the LBD caregiver’s sense of isolation, and challenges with the diagnostic experience. The findings appear in The Gerontologist, Advanced Access published July 28, 2010.
Subjective burden is how caregivers appraise the emotional, physical and social challenges they experience. These challenges are called stressors, and in LBD caregiving stressors may come from a broad array of situations, such as problems obtaining a diagnosis, behavioral problems, disrupted sleep, frequent falls or fainting. The lack of awareness about LBD, not only in the medical profession but also in the general public, is also a stressor. The interplay between stressors and the resources caregivers might use to manage those stressors, combined with the context of individual caregiver’s situation, is the source of subjective burden. Caregiving burden is associated with decreased well-being, depression, anger, anxiety and health and medical problems.
This research also suggests the lack of LBD awareness in the general public increases the subjective burden of LBD on families, which echoes the experience of dementia caregivers in the days before extensive public education had been done about Alzheimer’s disease.
Also unique to LBD caregivers are higher worries about their own performance as a caregiver, which may be due to fewer informational resources on LBD caregiving in comparison to Alzheimer’s or other forms of dementia, LBD caregivers’ sense of social isolation, and the challenges in finding supportive medical professionals or community services. As a result, LBD caregivers may be more concerned than caregivers of other forms of dementia about how well they are providing care. Spreading awareness about LBD may be the most essential first step in decreasing LBD caregivers’ worry about their performance as caregivers, and perhaps also other dimensions of subjective burden.
Penn State University doctoral student Amanda Leggett, under the supervision of Dr. Steven Zarit and in collaboration with Dr. Jim Galvin of New York University and the LBDA’s Scientific Advisory Council, was the lead author of the paper published in The Gerontologist, and also presented the data in Vienna, Austria at the International Conference on Alzheimer’s Disease and at the Gerontological Society of America’s annual conference.
Researchers studied data from 611 LBD caregiver respondents to an online survey which was posted on the Lewy Body Dementia Association (LBDA) website. The research abstract, along with text and .pdf versions of the full research paper can be accessed by visiting The Gerontologist. Additional analysis of the data can be found in LBDA’s new report, Caregiver Burden in Lewy Body Dementias.