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When Caregiving is Over: The Well-Being of Caregivers
of Parents with Dementia

By Marla Berg-Weger, Ph.D., LCSW, Doris McGartland Rubio, Ph.D.
Susan Tebb, Ph.D., LSW and Lisa A. Parnell, MSW 

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Gaining insights into the former caregiverís well-being can provide valuable information for working with caregivers before and during their caregiving experiences. Broadening the scope of the caregiving continuum to include the pre- and post-caregiving phases re-defines caregiving as a multi-faceted and complex phenomena.

Former caregivers find that the period following the death of their family member can be at one in which they reflect on and process the caregiving experience. The grief experience of caregivers of elders suffering from a dementing illness is a unique one, in many ways. Due to the loss of the elderly family memberís cognitive and physical function over a period of time, caregivers report that they often begin the grieving process before the actual death. For this group of caregivers, a sense of relief may occur when the care-recipient dies.

In a recent study of daughters who had cared for an elderly parent who suffered from Alzheimerís disease or a related disorder, but had since died, researchers report two critical findings that can benefit professionals working with family caregivers:

1) Well-being and ability to meet oneís basic needs are both higher for former caregivers than for non-caregivers. These findings suggest that, while caregiving can be stressful, the negative effects are not sustained into the post-caregiving phase. The authors speculate that post-caregivers may develop effective management skills during their caregiving experience that are carried over into the post-caregiving phase. Professionals and caregivers alike know that caring for a family member suffering from a dementing illness such as Alzheimerís disease, while stressful, can equip them with skills to better meet their basic needs.

Learning that former caregivers possess a higher level of well-being than those who have not provided care can guide the professional in working with caregivers who are in the pre-caregiving and active caregiving phases. This finding builds on the concept that self-care and attaining a balance in oneís life is critical at all times, but particularly important for the person who is anticipating and/or engaged in caring for a relative with dementia. Working with caregivers and pre-caregivers to mobilize and utilize resources and support systems and develop a management approach to caregiving may additionally contribute to their enhanced post-caregiving well-being.

2) Post-caregiversí income levels are higher than the comparison group. This finding suggests several potential explanations. First, former caregiversí income may have improved following the death of the loved one as a result of decreased expenditures related to caregiving, thus relieving the financial drain often associated with caring for a chronically ill person. Secondly, because caregivers tend to be older than non-caregivers, they may have accumulated a higher level of income and/or financial resources. Lastly, this finding suggests that the caregiver sought out paid employment, having been relieved of the role of caregiver.

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