The End of Caregiving

A study of dementia caregivers revealed that those who were prepared for the death of their person with dementia (PWD) had better bereavement outcomes than those who were not. The study identified several themes that contributed to poor grief outcomes, such as the perception of the dying process as traumatic or unexpected; traumatic loss of the caregiver role and accompanying loneliness; and perceived unavailability of support, either pre- or post-loss (Supiano et al., 2022).

While the majority of bereaved dementia family caregivers emerge after loss through largely positive and adaptive grief processes and resume previous levels of function after the death of their PWD, an estimated 9-25% experience complicated grief (CG), which increases with age and is associated with worse biopsychosocial outcomes for the griever (Supiano et al., 2022). CG is “characterized by yearning for the deceased, intrusive thoughts of the person who died, unrelenting sorrow, withdrawal from previous social relationships, difficulty accepting the death, and a sense that life is without purpose” (Supiano et al., 2022, p. 369). 

Caregivers of PWD face increased poor outcomes because their care recipients are more likely to experience distressing events that may lead to poorer quality of life, earlier institutionalization, more hospitalizations, and risk of elder abuse (Young et al., 2023).

Non-White caregivers tend to provide care for a longer duration, requiring more time-intensive care, engaging fewer formal support services than their White contemporaries. Non-White caregivers are more likely to face negatively biased interactions with health care services on behalf of their care recipients (Young et al., 2023)

What can caregivers do to prepare?

A combination of family and community support can ease caregivers’ transition to life after the passing of their loved one. Spiritual and religious communities offer fellowship and understanding from those who have walked this path before.

Hospice care provides support for caregivers and family/friends of the terminally ill. Many people wait longer than they have to before requesting these wonderful services. According to Barbara Karnes, RN and end-of-life educator, “Hospice helps these patients live as comfortably as possible with the understanding that they won’t be cured. Hospice also provides reassurance and practical assistance to families of the patients.” Karnes’ blog offers practical and warm end-of-life education.

Thanks for reading,
Leilani

References:

Supiano, K. P., Luptak, M., Andersen, T., Beynon, C., Iacob, E., & Wong, B. (2022). If we knew then what we know now: The preparedness experience of pre-loss and post-loss dementia caregivers. Death Studies, 46(2), 369–380. https://doi-org.library.capella.edu/10.1080/07481187.2020.1731014

Young, K. M., Young, T. D., & Young, K. (2023). Caring for the caregiver in dementia. The Journal of Family Practice, 72(5), 215–219. https://doi.org/10.12788/jfp.0606