Dementia is a syndrome that affects several areas of the brain and leads to a decrease in cognitive functioning, usually characterized by progressive deceleration of brain function over time (Elnasseh et al., 2016; Sosa-Ortiz, Acosta-Castillo, & Prince, 2012). It is characterized by a slow decline, and eventual loss, of cognitive functions, including inability to learn new information or to recall previously learned information.
Grief and loss is a common theme for informal caregivers throughout their caregiving experience. Caregivers experience a loss which results from the changes in the person with progressive dementia. Caregivers’ grief can change due to what stage of dementia their relative is in. Ambiguous loss describes the experience of the caregiver when the person with dementia is physically present but dramatically changed cognitively and behaviorally (Adams et al., 2008). Anticipatory grief is described as looking ahead to the death of the family member with dementia.
Relational deprivation acknowledges that the relationship between care provider and care recipient changes, and that the family member of someone with progressive dementia may suffer from the loss of reciprocity of the relationship (Adams et al., 2008). The caregiver’s level of relational deprivation corresponds to the patient’s level of cognitive impairment. Adams and Sanders (2004) found that distress over changes in the relationship was common. Once the disease progresses to the moderate stage, caregivers often report that they feel they have lost the affection and care that was previously available from the person with dementia. Additionally, it was found that in the early-stage of dementia, caregivers’ loss was centered on the loss of someone to share with and confide in (Adams & Sanders, 2004; Adams, 2006).
If you or someone you know is struggling with grief and loss due to caregiving, there are many resources available to assist in the process of support, coping, and problem-solving, including professional counseling. Call (215) 487-1330 or email us at Greenridge@intercommunityaction.org for more information about our counseling services, which include one-on-one therapy with a trained clinician
Author: Christina Vroman, M.A.
Adams, K.B. (2006). The transition to caregiving: Experiences of family members embarking on the dementia caregiving career. Journal of Gerontological Social Work, 47(3/4), 3–30.
Adams, K.B., & Sanders, S. (2004). Alzheimer’s caregiver differences in experience of loss, grief reactions and depression: A mixed-method analysis. Dementia: The International Journal of Social Research and Practice, 3(2), 195–210.
Adams, K. B., McClendon, M. J., & Smyth, K. A. (2008). Personal losses and relationship quality in dementia caregiving. Dementia: The International Journal Of Social Research And Practice, 7(3), 301-319. doi:10.1177/1471301208093286
Elnasseh, A. G., Trujillo, M. A., Peralta, S. V., Stolfi, M. E., Morelli, E., Perrin, P. B., & Arango-Lasprilla, J. C. (2016). Family Dynamics and Personal Strengths among Dementia Caregivers in Argentina. International Journal of Alzheimer’s Disease, 1-10. doi:10.1155/2016/2386728.
Sosa-Ortiz, A. L., Acosta-Castillo, I., & Prince, M. J. (2012). Epidemiology of dementias and Alzheimer’s disease. Archives of medical research, 43(8), 600-608.