Anticipatory grief: the loss that begins before death

The Dutch term is voorafgaand rouwen, or anticiperende rouw — anticipatory grief. It is recognised in palliative care guidelines (Richtlijn Rouw, Pallialine), in the training of VPTZ volunteers, and in the materials of MantelzorgNL. It is not a sign that something has gone wrong. It is one of the predictable shapes of long, slow loss.

This longread is for the people doing the grieving while still doing the caring.

What anticipatory grief is

Anticipatory grief is the emotional, physical and cognitive response to an awareness of an upcoming loss. It is sometimes called "grieving in advance," but the phrase is misleading: little of it is about the future. Most of it is about losses that are already happening — capacity, conversations, roles, the relationship as it used to be.

The international literature on anticipatory grief draws on the work of Therese Rando, who described it as a process of "grief, mourning, coping and interaction with the dying person and others" while the loss is unfolding [Rando, "Loss and Anticipatory Grief"]. Earlier, Erich Lindemann and later Elisabeth Kübler-Ross noted similar patterns in studies of bereaved families and dying patients. In Dutch palliative training, both authors are referenced, alongside the Richtlijn Rouw of IKNL/Pallialine, which gives clinical guidance for healthcare professionals.

It is not a fixed sequence of stages. It is a moving combination of grief over what has already been lost, fear of what is to come, and adjustment to the present.

Why it can be more intense than grief after death

This is the part that surprises families most: the period before death is often harder than the period after. There are several reasons recognised in the literature and reflected in clinical practice.

You are grieving and caring at the same time. Post-death grief takes place in a body that is no longer physically responsible for the person who died. Anticipatory grief takes place in a body that is still doing medication schedules, hospital appointments, night shifts, paperwork. The double load is the single most reported source of exhaustion among mantelzorgers in MantelzorgNL surveys.

The losses are repeated. A person with advanced dementia is, in a sense, lost over and over — the loss of recognition, the loss of language, the loss of mobility, the loss of the relationship as it was. Each is a small bereavement. There is no single date for the funeral.

The future keeps moving. A diagnosis can run for months or years; a prognosis is rarely precise. Families live in a permanent "not yet," which is more tiring to inhabit than either certainty or hope.

Social recognition is limited. Bereavement after a death attracts condolences, leave from work, time off from social demands. Anticipatory grief usually does not. The person is still alive; the world expects life to continue around the illness.

The Dutch palliative literature is careful not to overclaim that anticipatory grief eases later bereavement. Some studies suggest it can; others find no difference; the picture is mixed. What the literature is clear about is that anticipatory grief is real, identifiable, and worth supporting in its own right.

Ambivalence: relief and guilt

A common, exhausting feature of anticipatory grief is the simultaneous presence of feelings that seem to contradict each other.

A daughter caring for a parent with advanced dementia may love her mother and, on the same afternoon, wish for the situation to end. A husband whose wife is dying of cancer may hold her hand and, in the same minute, find himself looking up funeral information on his phone. The wish for it to be over is not absence of love — it is, often, an expression of it. So is the wish for the person to live forever.

The shame that follows these moments is one of the most reported themes in MantelzorgNL conversations and in VPTZ volunteer debriefings. It is also, in a sense, predictable: the brain that holds two true and incompatible feelings is doing something normal under impossible circumstances.

The Richtlijn Rouw notes that what helps is to name the ambivalence rather than to try to resolve it. Both feelings are accurate. Neither replaces the other. A volunteer or a rouwbegeleider (grief counsellor) can sometimes be the person it is safest to say this to first, before saying it to the family.

How it shows in the body and in behaviour

The Pallialine Richtlijn Rouw and MantelzorgNL materials reference common physical and behavioural manifestations. None is universal; many are mistaken for unrelated symptoms.

In the body: headaches, stomach pain, dizziness, chest tightness; loss of appetite or unusual hunger; trouble sleeping or sleeping much more than usual; reduced energy; more frequent minor illnesses.

In emotion: sadness that comes in waves rather than continuously; anger directed at the situation, at the illness, sometimes at the dying person; fear of the future; loneliness even in a full house; relief followed by guilt.

In thinking: trouble concentrating; intrusive thoughts about the loss; a sense of unreality, of being on the outside of one's own life; lower self-esteem; persistent self-criticism.

In behaviour: withdrawing from friends; dropping hobbies; over-functioning at work or under-functioning at it; restlessness; excessive checking on the patient; or, sometimes, avoidance of the bedside altogether. Avoidance is not a sign of not caring — it is sometimes the body's way of pacing what it can hold.

In dementia in particular, anticipatory grief can run for years and is described in the Dutch literature as especially heavy. The losses are slow, recurrent, and often invisible to outsiders.

What helps

Nothing makes anticipatory grief disappear. Several things make it survivable.

Naming it. People often think the feelings they are having are abnormal or shameful. Recognising the experience as a known process, with a name and a literature, reduces the second-order shame about the first-order grief. The Richtlijn Rouw recommends that healthcare professionals proactively identify anticipatory grief in family members and, where appropriate, refer them to support.

Talking, with someone who is not also inside the situation. This is the role of the rouwbegeleider, the geestelijk verzorger (spiritual counsellor — free since 2024 through the huisarts), the POH-GGZ (mental health practice nurse, also through the huisarts), or the Luisterlijn anonymous helpline (088 0767 000, 24/7). For some, a Humanitas peer-support group is the right register. For others, a single conversation with a VPTZ volunteer who is in the house anyway is enough.

Shared grief with the dying person. When the person who is dying is open to it, grieving together — naming the losses, expressing love and gratitude, saying what has been left unsaid — can become one of the most meaningful parts of the time that remains. It is a particular Dutch palliative tradition, supported in VPTZ training and in geestelijk verzorger work, to treat the last weeks not only as a medical event but as a relational one.

Practical relief. Anticipatory grief is heavier when the body is exhausted. Respijtzorg (respite care), VPTZ night watches (nachtwaken), kortdurend zorgverlof (short-term care leave, up to two weeks per year at 70% salary in NL), mantelzorgcompliment from the gemeente — none of these address the grief, but each makes it possible to feel something other than tiredness for a few hours.

Permission to feel ambivalent. Relief, anger, gratitude, fear, love — they take turns. Letting them, without trying to make them coherent, is often what the people closest to the dying person describe, in retrospect, as having mattered most.

What does not help

Two well-meant moves tend to make things harder, according to MantelzorgNL and Pallialine.

Pretending the loss is not happening. "Don't talk like that, he is still here." The dying person and the family usually already know. The pretence does not protect anyone; it isolates everyone.

Treating the grief as a problem to fix. Anticipatory grief is not pathology. It is the appropriate response of a loving person to an impending loss. When it tips over into prolonged inability to function, depression, or risk of harm, professional help is appropriate — but the goal is support, not removal of feeling.

Where to find help in the Netherlands

In the app

In the Personal Portal you record who in your circle you would want to call when the grief is heaviest, the contacts of your huisarts and any rouwbegeleider, and a note on what kind of presence you find helpful. The information is there before the night you need it.

Join the beta ->

Closed beta — access by invitation.

Sources

1. MantelzorgNL — information and support for informal caregivers, including materials on anticiperende rouw. https://www.mantelzorg.nl
2. VPTZ Nederland — volunteer presence in palliative care, training materials. https://www.vptz.nl
3. Pallialine / IKNL — Richtlijn Rouw (clinical grief guideline used in NL palliative care, drawing on Rando, Lindemann and Kübler-Ross). https://palliaweb.nl