What is the dementia grief model?

According to the Alzheimer's Foundation of America, caregivers of individuals with dementia frequently experience ambiguous loss, a profoundly challenging type of grief. The dementia grief model provides a framework for understanding this unique and complex emotional process, offering guidance for navigating the repeated losses experienced before a loved one's physical death.

Quick Summary

The dementia grief model is a theoretical framework explaining the unique, cyclical grieving process experienced by caregivers of individuals with dementia, characterized by ambiguous loss and anticipatory grief. It acknowledges the psychological impact of losing a loved one's mental and emotional presence while they are still physically alive, helping caregivers validate and process their complex emotions.

Key Points

• Unique Grieving Process: Dementia grief is a cyclical and iterative process, not a linear one, that occurs repeatedly throughout the illness's progression.

• Three Key States: The model cycles through three states—separation (acknowledging a loss), liminality (tolerating the ambiguity), and re-emergence (adapting to the new reality).

• Ambiguous Loss: A core component is the grief associated with ambiguous loss, where the loved one is physically present but cognitively and emotionally absent.

• Anticipatory Grief: Caregivers experience anticipatory grief, mourning the changes and losses before the loved one's death.

• Distinction from Traditional Grief: Unlike traditional grief, dementia grief lacks definitive closure and can involve a constant state of transition.

• Essential for Caregivers: Understanding this model helps caregivers validate their complex emotions, reduce guilt, and find effective coping strategies.

Understanding the Dementia Grief Model

Caring for a loved one with dementia involves navigating a complex and often misunderstood emotional landscape. Unlike grief associated with a sudden death, grief in the context of dementia is prolonged and cyclical, marked by small, repeated losses over time. The dementia grief model, particularly the one presented by Blandin and Pepin in 2017, provides a robust theoretical framework that moves beyond simply viewing grief as a symptom of caregiver stress. Instead, it frames dementia grief as a normal, yet distinct, process that caregivers must navigate repeatedly throughout the disease's progression. This model can help caregivers acknowledge their feelings, tolerate difficult emotions, and adapt to their new reality.

The Three Cyclical States of Dementia Grief

In their theoretical model, Blandin and Pepin outline an iterative cycle of three psychological states that dementia grief can follow: separation, liminality, and re-emergence. Understanding this cycle can help caregivers identify where they are in their own grief journey and recognize the mechanisms needed to move forward.

The Separation State

This is the initial phase where a caregiver recognizes a significant loss has occurred. It can be triggered by a specific event, such as a loved one no longer recognizing them or losing a critical functional ability. The key dynamic mechanism for moving through this state is acknowledging the loss. For many caregivers, this can be incredibly difficult, and they may become stalled in this state if they resist or deny the reality of the loss, which can be compounded by frequent, ongoing losses. For example, a loved one losing the ability to drive, cook, or manage finances all within a short period can be overwhelming, making it hard to fully acknowledge each individual loss.

The Liminal State

The term 'liminal' comes from the Latin word for 'threshold,' signifying being in a transitional space. This state is characterized by ambiguity, a central theme in dementia grief. It is the experience of having a loved one who is physically present but cognitively and emotionally absent, a concept known as ambiguous loss. Here, the caregiver is in a confusing and unstable space, balancing the person they knew with the person they are now. The dynamic mechanism in this state is tolerating difficult emotions, such as the pain of this paradoxical situation. Avoiding or suppressing these feelings can cause caregivers to become stuck in liminality.

The Re-emergence State

This final state is characterized by acceptance and adaptation. After processing the difficult emotions of the liminal state, the caregiver can gain clarity and incorporate the new reality into their daily life. This adaptation isn't about being 'cured' of grief but about finding a way to cope with the changed circumstances. Adaptation can manifest in practical ways, such as learning new communication methods or taking on responsibilities previously held by the person with dementia. However, this re-emergence is temporary, as dementia is progressive, and the cycle of separation, liminality, and re-emergence will likely begin again with the next significant loss.

Anticipatory Grief vs. Ambiguous Loss

While related, anticipatory grief and ambiguous loss are distinct concepts within the dementia grief model. Understanding the differences is critical for validating the caregiver's emotional experience.

• Anticipatory Grief: This is the grief felt in anticipation of an inevitable death. Caregivers often begin grieving the gradual decline of their loved one's abilities, personality, and memories long before their physical death. It is the process of mourning what is being lost and what future experiences will never come to be.

• Ambiguous Loss: Coined by Dr. Pauline Boss, this refers to a loss that remains unclear, with no clear resolution. In dementia, this is the profound sadness of a loved one being physically present but psychologically or emotionally absent. It is the feeling of having the person here and yet gone at the same time, leading to a state of 'frozen grief'.

Both anticipatory grief and ambiguous loss contribute to the caregiver's complex emotional journey, and the dementia grief model helps illuminate how these feelings repeatedly arise and are managed over time.

Coping Strategies for Navigating the Dementia Grief Model

Successfully navigating the cyclical nature of dementia grief requires proactive strategies to maintain emotional well-being.

• Acknowledge Your Emotions: Give yourself permission to feel the full range of emotions—sadness, anger, guilt, and frustration—without judgment. Understand that these feelings are a normal and valid part of the caregiving experience.

• Build a Strong Support System: Connect with others who understand what you are going through. Joining a caregiver support group, whether in-person or online, can provide a space to share experiences and feel less isolated.

• Prioritize Self-Care: Caregiving is emotionally and physically demanding, and it is crucial to protect your own well-being. Set aside time for hobbies, exercise, or rest. You cannot pour from an empty cup.

• Seek Professional Help: If grief feels overwhelming or prolonged, consider speaking with a professional counselor or therapist specializing in grief and loss. They can provide specialized tools to help you process complex emotions.

• Create New Meaningful Moments: As the relationship with your loved one changes, find new ways to connect and create positive moments. This could be through listening to music, looking at old photos, or simply holding hands. These small moments can be powerful reminders of your enduring bond.

Comparison of Traditional vs. Dementia Grief

Feature	Traditional Grief	Dementia Grief Model
Timing	Triggered by a clear, final event (e.g., death).	Ongoing and cyclical; begins long before death.
Nature of Loss	Physical and psychological absence.	Ambiguous loss: physical presence with psychological/emotional absence.
Linearity	Often follows a somewhat linear path (e.g., Kübler-Ross stages).	Non-linear; can move in and out of different emotional states repeatedly.
Cause	Primarily death.	Caused by compounded serial losses (memory, personality, abilities).
Closure	Generally leads to eventual closure and resolution.	Lack of clear closure; grief can feel 'frozen' and unresolved.
Adaptation	Adapting to life without the person.	Iterative adaptation to the loved one's evolving condition.

Conclusion

The dementia grief model is an invaluable tool for caregivers, providing a roadmap for an otherwise confusing and isolating journey. By acknowledging that grief for a loved one with dementia is a unique, cyclical, and ambiguous process, caregivers can better understand their own emotional needs and find healthier ways to cope. Recognizing the stages of separation, liminality, and re-emergence allows for self-compassion and encourages proactive strategies, from seeking support to finding joy in new moments. This understanding is a critical step toward validating the caregiver's experience and promoting resilience throughout the caregiving journey and beyond.

Center for Loss and Bereavement

Frequently Asked Questions

What is ambiguous loss in the context of dementia?

Ambiguous loss is the profound feeling of grief and sadness when a loved one is physically present but psychologically or emotionally absent. For dementia caregivers, it’s the heartache of mourning the person they once knew while that person is still physically alive, leading to a confusing sense of being stuck in limbo.

How is dementia grief different from traditional grief?

Dementia grief is distinct because it is ongoing and cyclical, starting long before a person's death. Traditional grief typically follows a clear loss event. With dementia, the grief is ambiguous, lacks resolution, and involves adapting to a series of compounded losses over time, rather than a single event.

Can people with dementia also experience grief?

Yes, people with dementia can and do experience grief, particularly in the early stages. They may mourn the loss of their independence, abilities, and future plans. Their expression of grief may differ due to cognitive changes, and they may need support to process these feelings.

What are the common feelings experienced in dementia grief?

Caregivers often experience a wide range of emotions, including denial, anger, guilt, sadness, frustration, and eventual acceptance. It is also common to feel both love and anger simultaneously, which can contribute to feelings of guilt.

How can a caregiver cope with the ambiguity of dementia grief?

Coping with the ambiguity involves acknowledging your feelings, building a support system, prioritizing self-care, and finding new ways to connect with your loved one. Learning to hold two opposing thoughts, such as 'she is here and she is also gone,' can help process the duality of the experience.

What happens if a caregiver gets stuck in one of the grief model's stages?

If a caregiver gets stuck in a stage, it can hinder their ability to adapt and lead to increased distress, stress, and burnout. Failure to acknowledge a loss, for example, can keep them in the separation phase, while suppressing difficult emotions can prolong the liminal state. Professional intervention may be needed in these cases.

Is it normal to feel relief when a loved one with dementia passes away?

Yes, it is common and normal for a caregiver to feel a sense of relief after a loved one with dementia passes. This is often tied to the end of a long, difficult caregiving journey and the end of suffering for the loved one. It is important to remember that this feeling is valid and does not diminish the love you felt.