Grief That Begins Before Death

Anticipatory Grief is not a lesser form of grief. It is grief occurring in real time, in response to real losses — losses of function, personality, memory, relational reciprocity, and shared future — that accumulate across the trajectory of a progressive illness. For caregivers of individuals with Alzheimer’s disease, this grief can span years or even decades, and it rarely receives the recognition or support that post-death bereavement does.

Younger onset Alzheimer’s — diagnosed before age 65 — adds additional layers of complexity. The person being cared for may still be in a primary relational role: spouse, parent of dependent children, professional, active community member. The losses arrive earlier, often more abruptly, and in contexts where neither the caregiver nor the systems around them are prepared.

For helping professionals, understanding anticipatory grief as a clinical and human experience — distinct from post-death bereavement but equally deserving of grief-informed care — is essential to supporting this population well. This episode of the GRIEF Ladies podcast addresses the emotional realities of Alzheimer’s Caregiving, the nature of anticipatory grief, and what meaningful support looks like for caregivers who are grieving someone still present.

What This Episode Covers

The conversation addresses several areas with direct relevance to professionals supporting caregivers and bereaved individuals:

• What anticipatory grief looks like in the context of Alzheimer’s caregiving, and how it differs from post-death grief

• The cumulative emotional weight of caregiving — including grief, exhaustion, ambivalence, and relational loss

• Why social isolation is both a structural and emotional risk for this population

• What realistic, sustainable self-care looks like for caregivers with limited time, energy, and support

• How moments of genuine connection remain possible — and clinically significant — even in advanced disease stages

Clinical and Systemic Implications

Anticipatory grief in dementia caregiving is one of the most prolonged and structurally unsupported grief experiences that helping professionals will encounter. Several clinical and systemic realities are worth naming directly.

Anticipatory grief does not reduce post-death grief. A common assumption — held by both professionals and caregivers themselves — is that grieving throughout a long illness will somehow prepare a person for the death. Research does not support this. Post-death grief in Alzheimer’s caregivers is often acute and can include relief, guilt about that relief, disorientation after years of caregiving structure, and grief for losses that were deferred during the demands of care. Professionals should not assume that the pre-death period has functioned as grief preparation.

Caregiver grief is frequently disenfranchised. Because the person with Alzheimer’s is still alive, the caregiver’s grief is often invisible to their social network and to the healthcare system. Friends and Family may not recognize the losses being experienced. Medical providers focused on the patient may not assess the caregiver’s emotional state at all. This disenfranchisement is a significant risk factor for caregiver Burnout, Depression, and complicated bereavement following the death.

The relational losses in Alzheimer’s caregiving are cumulative and non-linear. Caregivers do not experience one loss — they experience a prolonged series of them. The loss of conversation, of shared memory, of being recognized, of reciprocal affection, of the future they expected. Each shift in the disease trajectory can trigger a new wave of grief. Without a framework that normalizes this pattern, caregivers frequently pathologize their own responses and delay or avoid seeking support.

Younger onset Alzheimer’s creates specific systemic gaps. Caregivers in this context may be simultaneously managing minor children, active careers, and financial pressures while providing care. School systems may encounter children whose parent has younger onset Alzheimer’s — and those children are themselves experiencing anticipatory grief with very few age-appropriate resources available. Educators and school counselors benefit from understanding this specific presentation.

Caregiver identity disruption is a clinical concern. For spouses and partners, caregiving can gradually replace the entire relational structure of a Marriage or partnership. By the time of death, some caregivers have been in a caregiver role longer than they were in an equal partnership. The post-death period then involves not only bereavement but significant identity reconstruction — a dimension of grief that is often missed in standard bereavement support.

Practical Applications for Helping Professionals

1. Assess for anticipatory grief in caregiver populations. When working with or encountering caregivers of individuals with Alzheimer’s or other progressive illnesses, ask directly about grief. Many caregivers have not named their experience as grief and may respond with significant relief when a professional does. Assessment questions might include: What have you lost in this relationship over time? What do you find yourself mourning? What support, if any, are you receiving?

2. Normalize the full range of caregiver emotional experience. Caregivers of individuals with Alzheimer’s frequently experience ambivalence — Love and resentment, devotion and exhaustion, connection and profound loneliness. Without normalization from a professional, these responses generate shame. Explicitly naming that ambivalence is an expected feature of this kind of caregiving, not a character flaw, is a meaningful and accessible clinical intervention.

3. Address disenfranchisement directly. Help caregivers identify where their grief is and is not being acknowledged. Who in their network understands what they are losing? Where are they receiving minimizing or dismissive responses? Supporting caregivers in finding or building communities where their grief is recognized — support groups, peer networks, grief-informed Therapy — addresses one of the most significant risk factors in this population.

4. Support sustainable self-care without prescriptiveness. Generic self-care advice — Exercise, Sleep, eat well — lands poorly with caregivers who are structurally unable to prioritize their own needs. Grief-informed support in this area focuses on identifying what is actually available and realistic given the caregiver’s specific constraints. Even small, consistent practices that provide regulation and relief matter. The goal is sustainability, not optimization.

5. Prepare caregivers for the post-death period. Where clinically appropriate, helping caregivers develop some anticipation of what the post-death period may involve — including the possibility of acute grief, relief, guilt, and identity disorientation — can reduce distress and increase help-seeking following the death. This is not about preparing emotionally in a way that prevents grief, but about ensuring caregivers know that support is available and appropriate after the death, not just during caregiving.

6. Train school personnel to recognize anticipatory grief in children. Children with a parent or grandparent experiencing Alzheimer’s are often grieving silently and without language for what they are experiencing. School counselors and educators who understand anticipatory grief can identify behavioral and emotional changes in students, offer appropriate support, and connect families with resources. This is a concrete application of grief Education in school settings.

About the Guest

Cheri Davies is a clinical social worker based in upstate New York. After her husband, Chris, was diagnosed with younger onset Alzheimer’s in June 2019, Cheri became a strong advocate for the Alzheimer’s Association as an Ambassador for the Alzheimer’s Impact Movement. Cheri is also a founding member of Surviving the Now: younger Onset Alzheimer’s.  Their mission is to provide support to spouses and caregivers a supportive community while going through younger onset Alzheimer’s. Cheri is also an author in three collaborative books including Holistic Mental Health Vol 1 and 2, and The award winning Grief Experience, Tools for Acceptance, Resilience, and Connection.

 Karen Sandone is a member of the NFL Alumni community and a passionate Alzheimer’s advocate. She holds a master’s degree in Human Resources Development from Villanova University and has served as Director of Human Resources at the Bucks County Intermediate Unit since 2016.

After her husband, Anthony, was diagnosed with Younger-Onset Alzheimer’s at 55, Karen became a dedicated caregiver, volunteer for the Alzheimer’s Association, congressional advocate for the Alzheimer’s Impact Movement (AIM), and founder of Surviving the Now, a supportive community for caregivers. Through her speaking and writing, she shares her family’s journey to inspire awareness, strength, and hope.

Resources from the Center for Informed Grief

The Center for Informed Grief provides professional training and education for therapists, healthcare providers, educators, and organizational leaders working with bereaved and grieving individuals. Our programs address grief across its full complexity — including anticipatory grief, caregiver bereavement, and loss that occurs outside of conventional post-death frameworks.

To learn more about upcoming trainings, workshops, or consultation opportunities, visit the Center for Informed Grief.

Kelly Daugherty The GRIEF Ladies

The GRIEF Ladies grew from decades of clinical work, community building, and lived experience. It isn’t a checklist to “get over it.” It’s a path you can re-enter on the hardest days and the ordinary ones.

Kelly Daugherty from Center for Informed Grief and Karyn Arnold of Grief in Common first connected when Kelly was leading a collaborative grief book project and posted in a Facebook group looking for authors. Karyn responded, and from their very first conversation, the connection was instant. They discovered a shared passion for supporting grieving individuals and striking similarities in their approaches and professional paths. Both had worked in hospice, and both believed that there are practical tools that can truly help support someone on their grief journey.

That first book became The Grief Experience: Tools for Acceptance, Resilience, and Connection. From there, their collaboration grew naturally. What began with one project has blossomed into an ongoing partnership including building frameworks, workshops, and now the GRIEF Ladies Podcast to help others navigate life after loss with honesty and hope. Sign up for their newsletter to stay informed about their future ventures!

Karyn Arnold has served grievers for 25+ years as a facilitator, educator, and the founder of Grief in Common, an online community that connects people by shared experiences of loss. With a background in psychology and mind–body work, Karyn blends evidence-informed practice with simple daily actions that help people steady themselves and find support. She has guided thousands of grievers through groups, workshops, and online programs, and partners with clinicians and organizations to make grief resources easier to find and use.

Kelly Daugherty, LCSW-R, FT, BCC, is a clinician, educator, board-certified coach, and founder of the Center for Informed Grief in Malta, NY. A Fellow in Thanatology, Kelly has worked with individuals and families across hospice, schools, and private practice for over two decades. Her commitment to grief work began after her mother’s death during Kelly’s teen years, shaping a career focused on practical, compassionate support. Kelly develops trainings for educators and mental-health professionals, consults with schools on grief-informed practices, and leads community programs that normalize grief while teaching concrete skills. She believes accessible, plain-language tools can change how communities show up for one another.