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Silent Struggles: Understanding Disenfranchised Grief in Dementia
By Austin McKee, MSSW, Helpline Specialist and Content Creator at Alzheimer’s Texas, with extensive expertise in geriatric care, caregiver support, and end-of-life care.
In our December newsletter, we reviewed Lewy Body Dementia, a complex and progressive brain disorder caused by the buildup of abnormal proteins called Lewy bodies. Access that article here: Uncovering Lewy Body Dementia: From Diagnosis to Management. This month, we'll explore the disenfranchised grief in dementia.
Watching a loved one forget the shared world you built together is an unimaginable loss—one that only those who have experienced it can truly understand. While grief is often associated with death, what happens when someone is still physically present, but their memories and connections begin to fade? Alzheimer’s disease and other dementias often lead to disenfranchised grief—a profound loss that carries the emotional weight of death but lacks the recognition and support from society.
Key Concepts of Disenfranchised Grief:
Ambiguous loss: occurs when there is a lack of clarity or closure surrounding a loss. In dementia, this can happen when a loved one remains physically present but begins to lose cognitive abilities, memories, or emotional connections, creating a profound sense of absence despite their physical presence. Chronic grief: persists over a long period without resolution or closure. The person’s body remains present, but their essence is slipping away, making it challenging to fully mourn or find closure. Cumulative grief: arises when a person experiences multiple losses over time without the opportunity to fully process each one. Each of these losses warrants time and space to grieve, yet in the context of dementia, the disease’s progression and caregiving demands make this increasingly difficult.
Stigma: intensifies disenfranchised grief by fostering avoidance, shame, and judgment. For example, a child who places a parent with dementia in a long-term care facility may face criticism, such as, “How could you give up on them like that?” These uninformed judgments can heighten feelings of guilt and shame, leaving the individual grappling with profound inner conflict and feeling unsupported in their loss. Lack of social recognition: For those not directly involved in caregiving or the daily life of someone with dementia, the gradual, cumulative changes dementia brings often go unnoticed or are minimized. As a helpline specialist, I frequently hear from individuals who feel that others fail to grasp the profound changes they are experiencing. This lack of understanding can amplify grief, making it even harder to seek or receive meaningful support.
Riverbend Church is partnering with AGE of Central Texas for the 12th annual “GPS: Navigation for Caregivers” conference on Saturday, March 1, 2025 from 8:30 a.m. to 2:30 p.m.This FREE conference will be presented in-person at Riverbend Church located at 4214 N Capital of Texas Hwy, Austin, TX 78746. The conference is also available virtually.
For the past ten years, Riverbend Church has hosted this FREE conference to provide unpaid family caregivers with relevant information and vital resources to help ease the challenges of caring for an aging family member. Participants will discover local resources, acquire skills to better manage their caregiving situation, and connect with national and local experts on aging.
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