Being a dementia caregiver can have a negative impact on one’s psychological well-being. But what is specifically known about the impact of LBD caregiving? And how it might differ based on who is providing the care? Newly published data suggests that spouses and adult children each have some unique needs as LBD caregivers.
Over 400 LBD caregivers answered 230 questions in an online survey project led by James Galvin, MD, of Florida Atlantic University. Dr. Galvin is a member of LBDA’s Scientific Advisory Council and leads of 1 of LBDA’s 25 LBDA Research Centers of Excellence. The respondents included 255 LBD spousal caregivers and 160 adult child LBD caregivers. The data was then analyzed to identify what similarities and differences could be seen in caregiver-related burden, grief, depression, well-being, quality of life and social support.
The study revealed common and unique experiences between the types of LBD caregivers. Some of the similarities are linked to the care recipient’s severity of dementia and frequency of behavioral symptoms (e.g. hallucinations). More frequent behavioral symptoms worsened caregivers’ depression, grief, burden and quality of life. Similarly, more severe dementia was linked to caregiver reports of lower quality of life and higher burden.
Adult children were more likely to care for a woman with LBD (i.e., their mothers); spouses cared for more males (i.e. their husbands). Spouses were more likely to see the person with LBD daily. The care recipients of adult children were more likely to be older, have less education, and have more severe dementia.
Caregivers who were the child of the person with LBD were more likely to report higher caregiver burden and lower quality of life compared to spouses. More severe dementia in the care recipient predicted lower quality of life for adult child caregivers, but not spouses.
This study was not designed to explore the causes of the caregiver burden. The authors noted spouses may have more time for caregiving. Other studies suggest spouses may view the sacrifice of their leisure time differently from adult children.
Adult children worried more about their caregiving performance than spouses. Spousal caregivers reported more grief as LBD progressed. Adult children reported greater social support than spousal caregivers in general, and as the disease progressed. In general, stronger social support, social networks and greater well-being were correlated with lower caregiver depression, grief and burden.
Clinicals are encouraged to screen LBD caregivers for burden, grief and depression. Education and coping strategies for behavioral symptoms of LBD are recommended. Spousal caregivers may benefit from increased access to support resources. Interventions to reduce burden and improve quality of life may help adult children caring for people with LBD
A referral to the Lewy Body Dementia Association provides all caregivers with access to LBD-specific educational and support resources.
Reference: Rigby T, Ashwill RT, Johnson DK, Galvin JE. Differences in the Experience of Caregiving Between Spouse and Adult Child Caregivers in Dementia with Lewy Bodies. Innov Aging [online serial]. 2019;3.