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Early-onset dementia (EOD), which occurs before age 65, is less common than old-age onset but is also unexpected. As with old-age onset, spouse caregivers experience caregiver burden and distress along with grief, feelings of loss and sorrow. Grief may be particularly significant among spousal caregivers when dementia occurs early as opposed to later in life because there are greater interrupted expectations for the future. Many of those interrupted expectations include current and future changes in the caregiver’s financial situation.
Method
In order to evaluate the nature of this grief, we interviewed 36 caregivers who were providing care to a spouse afflicted with an EOD. Their open-ended interviews were transcribed, coded and analyzed for emerging themes using thematic analysis.
Findings
Caregivers were predominately female (62%), white (95.8%), middle-aged (58.48 ±12.7), and had provided care for 3 .95±2.8 years. Two major grief-related categories emerged anticipatory and concurrent grief. Anticipatory grief included the following categories: anticipated death of spouse, lost future together, lack of ongoing spousal companionship, and financial uncertainty. Concurrent grief, which occurs as caregivers respond to real-time dementia-related changes in their spouse, included the following categories loss of spouse personhood/personality, loss of marital relationship, and loss of household partnership. Additionally, the caregivers’ grief was not experienced as a linear sequential process, but as episodic grief events triggered by the progression of the illness— a proposed model is presented.
Conclusions and Implications:
The findings highlight anticipatory grief in EOD caregiving as a major mental health issue that may be a result of grief due to financial loss from the illness. Additionally, the proposed model of grief among caregivers of spouses with EOD that can be used to plan targeted interventions.