By Austin McKee, LMSW
Disenfranchised Grief
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.
In the late 1980s, Dr. Kenneth Doka introduced the term 'disenfranchised grief' to describe grief arising from non-death losses, such as the gradual loss of a loved one's identity due to dementia. Often overlooked, disenfranchised grief leaves caregivers and families grappling with the emotional weight of caring for someone who is physically present but slowly fading in ways that are not immediately apparent to others. 1
Key Concepts of Disenfranchised Grief
To better understand how disenfranchised grief impacts caregivers and individuals affected by dementia, it’s helpful to explore its key components: ambiguous loss, cumulative grief, chronic grief, isolation, stigma, and lack of social recognition. Each is deeply intertwined with the dementia journey.2
Ambiguous loss occurs when there is a lack of clarity or closure surrounding a loss.3 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.
Cumulative grief arises when a person experiences multiple losses over time without the opportunity to fully process each one.4 For instance, a caregiver may witness their loved one gradually lose their memories, independence, ability to communicate, and core aspects of their personality. 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.
Chronic grief refers to grief that persists over a long period without resolution or closure.5 This is often experienced by caregivers of loved ones with dementia as they witness the gradual loss of cognitive and physical abilities. The person’s body remains present, but their essence is slipping away, making it challenging to fully mourn or find closure.
Caregiver isolation can lead to feelings of loneliness and depression. Studies indicate that 40–70% of caregivers experience social isolation when caring for someone with dementia.6 Unfortunately, these struggles often go unnoticed by those who were once part of the caregiver’s support system. The combination of social disconnection and caregiving stress amplifies loneliness and deepens grief.
Stigma intensifies disenfranchised grief by fostering avoidance, shame, and judgment.7 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.
The lack of social recognition surrounding dementia-related loss compounds these struggles. 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.8 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.
How Can You Help?
Offering validation and empathy are some of the most meaningful ways to support individuals grappling with the grief that comes with losing a loved one to dementia.
To validate someone is to acknowledge that their feelings, thoughts, and experiences are real and meaningful. Validation doesn’t require agreement with their perspective—it simply means recognizing their emotional reality and offering a nonjudgmental ear. For example, if someone expresses guilt about feeling frustrated and wanting time away from caregiving, a validating response might be:
“I hear that you’re feeling exhausted. Wanting time to yourself doesn’t diminish your love for your mom—it shows that you recognize your own limits. It’s okay to seek support when you need a break.”
In addition to validation, empathy plays a crucial role in helping a person feel truly heard. Empathy involves putting yourself in another person’s shoes and showing understanding, without trying to solve their problems. An empathetic response to the example above could sound like:
"I can imagine how difficult it is to be needed by someone 24/7. It’s completely okay to feel tired—it doesn’t mean you’re failing your mom. You’re doing your best, and it’s okay to ask for help when you need it.”
While we can’t erase the pain of loss, we can help ease feelings of isolation by creating a nonjudgmental space and offering validation and empathy. This approach can have a profound impact on those experiencing disenfranchised grief. As we strive to support individuals navigating this silent struggle, we must acknowledge the grief that often goes unseen and offer the empathy and recognition that can make all the difference.
You are not alone. If you or someone you care about is experiencing grief related to dementia and need support, we encourage you to visit Alzheimer’s Texas or call our 24/7 Helpline at (512) 241-0420. Our compassionate team is here to listen, provide resources, and help you navigate this challenging journey.
Austin McKee, MSSW, is the Helpline Specialist and Content Creator at Alzheimer’s Texas. With a Master of Science in Social Work, Austin has extensive experience in geriatric care, including social support and engagement, end-of-life care, and caregiver support. She is passionate about bridging the gap between generations, fostering mutual understanding, and helping people recognize the inherent value and purpose in individuals of all ages, regardless of physical or cognitive changes.
Sources:
- NPR, The Importance of Mourning Losses (even when they seem small)., last reviewed June 14, 2021, https://www.npr.org/2021/06/02/1002446604/the-importance-of-mourning-losses-even-when-they-seem-small (accessed January 2, 2025).
- Healthline, Disenfranchised Grief: When No One Seems to Understand Your Loss., last reviewed March 30, 2020, https://www.healthline.com/health/mental-health/disenfranchised-grief (accessed January 5, 2025).
- Mayo Clinic, Unnamed pain: coping with ambiguous loss., last reviewed April 10, 2023, https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/coping-with-ambiguous-grief (accessed January 5, 2025).
- VeryWellHealth, What is Compounded Grief?., last reviewed December 24, 2022, https://www.verywellmind.com/compounded-grief-symptoms-causes-diagnosis-and-coping-6979518# (accessed December 23, 2024).
- Alzheimer Society, Managing Ambiguous Loss and Grief., Last reviewed October 17, 2023, https://alzheimer.ca/en/help-information/i-have-friend-or-family-member-who-lives-dementia/managing-ambiguous-loss-grief# (accessed December 31, 2024).
- National Library of Medicine, Depression among caregivers of patients with dementia: Associative factors and management approaches. Word J Psychiatry. Last reviewed January 19, 2022, https://pmc.ncbi.nlm.nih.gov/articles/PMC8783169/# (accessed January 7, 2025).
- Healthline, Disenfranchised Grief: When No One Seems to Understand Your Loss., last reviewed March 30, 2020, https://www.healthline.com/health/mental-health/disenfranchised-grief (accessed January 5, 2025).
- National Library of Medicine, Family caregivers of people with dementia. Last reviewed June 11, 2009, https://pmc.ncbi.nlm.nih.gov/articles/PMC3181916/# ( accessed January 7, 2025).