Ambiguous Loss: Grieving Someone Living With The Fluctuating Changes of Dementia
Ambiguous Loss: Grieving Someone Living With The Fluctuating Changes of Dementia
If you’re supporting a family member living with dementia, you may have experienced those moments of ambiguous relational awareness and engagement in that person. You sit across from your husband, your mum, or your aunty, and feel a wave of loss, even though they’re right there in front of you. Or maybe there are moments of lucidity which can feel just as hard in contrast.
This experience is one of the least understood forms of grief there is. It is called ambiguous loss, and it sits at the heart of what makes caring for someone with dementia so emotionally complex. Unlike grief after a death, it comes without a clear point where it began or where it might end.
This article explains what ambiguous loss is, why it feels so hard, how it shows up for both carers and someone living with dementia, and what the research and clinical experience tell us helps.
What is ambiguous loss?
Ambiguous loss is a loss that has no clear resolution or closure. It was first described by American researcher Dr Pauline Boss, who used it to name a particular kind of loss where someone is gone in one sense but still present in another (Boss, 2004). In dementia, this shows up as a family member who is physically present but, in moments, psychologically further away than they used to be.
What makes it so difficult is the absence of a clear before and after. With ambiguous loss, the loss unfolds slowly, over months and years, and it can return again and again as memory, personality, or connection continue to shift, alongside moments of fluctuating and unexpected awareness (Boss, 2010; Walmsley& McCormack, 2017, 2018a, 2018b)
Why does grieving someone with dementia feel so confusing?
Ambiguous loss rarely arrives on its own. It tends to travel alongside two other experiences, and naming them can help make sense of why dementia grief feels the way it does.
Anticipatory grief
Anticipatory grief is the mourning that can begin well before any death, as we come to terms with losses that have already happened and losses we can see coming (Rando, 1986). It involves grieving, coping, and quietly reorganising life around what is changing. A recent systematic review found this form of grief is common and significant enough among dementia carers that researchers now treat it as a measurable experience in its own right, not simply a by-product of stress (Dehpour & Koffman, 2023).
Disenfranchised grief
Disenfranchised grief is what happens when the people around you do not recognise your loss as a real one, because no one has died (Doka, 2002). Friends might say "at least they are still with you," not realising how much has already been lost. This can leave carers grieving privately, sometimes even feeling they do not have permission to grieve at all. Recent research describes exactly this pattern: dementia carers experience a distinctive grief that often goes unacknowledged by family and health professionals alike (Sánchez-Alcón et al., 2023).
Put these together and the confusion makes sense. You are grieving a loss that is ongoing rather than finished, that you can partly see coming, and that the people around you may not recognise as grief at all.
Is it normal to grieve someone who is still alive?
Yes. Grieving someone who is still living is a well-documented and entirely normal response to dementia, not a sign that you are giving up on the person. Clinicians increasingly recognise that the losses gathered along the way, including the loss of roles, routines, shared conversation, and the relationship as it once was (Nathanson & Rogers, 2020).
It is also worth knowing that this grief does not necessarily end when caregiving does. The losses accumulated across years of caring can carry into bereavement after a death, which is part of why support both during and after caring matters (Nathanson & Rogers, 2020). Recognising the grief while the person is still here is not something to feel guilty about. It is often the beginning of coping with it.
Do people living with dementia grieve too?
Yes, of course, and this is easy to overlook. A 2024 review brought together 19 qualitative studies and nearly 500 participants, including people living with dementia themselves, and identified five distinct dimensions of grief they described: grieving the person they used to be, grieving how others now see them, grieving the person they are becoming, grieving those they have lost, and finding what helps them cope (Waddington et al., 2024).
If you are supporting someone with dementia, they may be carrying a grief of their own, even when the words for it become harder to find. Understanding this can subtly change how we sit with someone, moving from managing symptoms toward acknowledging a shared experience of loss.
Can there still be connection within the loss?
This is often the most important question, and the answer is yes. Ambiguous loss does not mean the relationship is over, or that closeness has to end where memory falters.
In my own doctoral research into families' experiences of dementia, I found that even amid real distress, family members often moved between feelings of aloneness and moments of unexpected, renewed connection with the person they were caring for (Walmsley & McCormack, 2018a). One wife described a bond of devotion that held firm throughout advanced dementia, reaching past the losses to something that remained constant between them.
For many families, a kind of growth grew out of that struggle. As people moved beyond the stigma, shame, and loss that can surround dementia, some described a redefining of themselves and their relationships that made room for hope, acceptance, and meaning, holding what was lost and what remained at the same time (Walmsley & McCormack, 2016). This can be true even when caring involves experiences of traumatic loss and grief along the way (McCormack et al., 2017; Walmsley & McCormack, 2016).
This mirrors what carers often tell me directly. The sadness and the tenderness can sit side by side. You don’t have to choose between grieving who someone was and still finding moments of connection and meaning with the person in front of you.
What helps with ambiguous loss?
There is no one way to ease a loss that has an ambiguous closure, but the research and clinical experience point to several things that help.
Naming it
Recognising the experience as ambiguous loss, rather than something being wrong with you, can ease the confusion and self-doubt that so often come with it. Simply having language for it tends to bring relief.
Letting go of a tidy timeline
Ambiguous loss resists any neat stages we might associate with grief after a death. It is normal for it to come in waves, settle, then return as the person's awareness fluctuates and changes. Expecting it to be a shifting type of landscape, as dementia progresses, can make it less distressing when ambiguous loss resurface compounded by those moments of unexpected awareness that feel both wonderful and hard at the same time.
Finding people who understand
Disenfranchised grief loses some of its sting around others who do not need it explained, whether that is a carer support group, a trusted friend, or a clinical psychologist familiar with dementia. Connection is one of the strongest protective factors against grief becoming stuck.
Making room for both grief and connection
You are allowed to miss who someone was and still enjoy who they are, all in the same afternoon. Holding both, rather than choosing between them, is closer to how this kind of grief actually heals. When we can accept the fluctuating and progressive changes that occur, and find new meaning in them, it becomes easier to make the most of each moment and enjoy the connection that remains (Walmsley & McCormack, 2016).
Structured psychological support
A 2023 systematic review and meta-analysis found that structured support for dementia carers, including guided reflection, psychoeducation, and carer support groups, was associated with meaningful improvements in both grief and depression, particularly around the emotional pain of the loss and the sense of how much of the relationship had changed (Sánchez-Alcón et al., 2023). Support helps, and it is reasonable to seek it out.
Frequently asked questions
Is it normal to grieve someone with dementia who is still alive?
Yes. This is one of the most common and least talked-about experiences in dementia caring. Grieving someone who is physically present but changed is called ambiguous loss, and it is a normal response to a real and ongoing loss, not a sign of disloyalty or giving up. Naming it as grief is often the first step toward coping with it.
What is the difference between ambiguous loss and anticipatory grief?
They overlap but are not identical. Ambiguous loss describes grieving someone who is present in body but, at times, psychologically absent, a loss without clear resolution (Boss, 2004). Anticipatory grief describes the mourning that begins in response to losses we can see coming, including an eventual death (Rando, 1986). Family members, friends, and carers often experience both at once, which is part of why the grief can feel so layered.
Why do family and friends not understand what I am going through?
Because no one has died, others often do not recognise dementia grief as grief at all. This is called disenfranchised grief, where a loss is real but goes socially unacknowledged (Doka, 2002). Comments like "at least they are still here" are usually well-meant, but they can leave carers feeling their grief is invisible. Finding people who do understand, including support groups or a clinical psychologist, can make a significant difference.
Will I still grieve after they die if I have been grieving all along?
Yes, of course, and this is normal. Grieving during the caring years does not use up your grief or spare you bereavement afterwards. The losses accumulated across years of caring can carry into grief after a death, especially where there have been traumatic losses, which is why support both during and after caring can be valuable (Nathanson & Rogers, 2020).
Can therapy help with this kind of grief?
Yes. While ambiguous loss has no tidy resolution, structured psychological support has been associated with meaningful improvements in grief and low mood for dementia carers (Sánchez-Alcón et al., 2023). Therapy can offer language for the experience, space to hold both grief and connection, and practical support for the emotional load of caring.
Do I need a GP referral to see a psychologist at Upside Stories?
No referral is needed to book. Medicare rebates do apply if you have a GP referral with a Mental Health Treatment Plan, which reduces the cost of sessions. A free 20-minute consultation is available for new clients to explore whether Upside Stories is the right fit for you.
What the research tells us
Ambiguous loss describes grieving a loved one who is physically present but psychologically absent, a loss with no clear resolution or closure (Boss, 2004, 2010).
Anticipatory grief, the mourning that begins before a death in response to losses already occurring and those ahead, is common and clinically significant among dementia carers (Rando, 1986; Dehpour & Koffman, 2023).
Dementia grief is frequently disenfranchised, meaning it is real but goes unacknowledged by others because no death has occurred, which adds to carer distress (Doka, 2002; Sánchez-Alcón et al., 2023).
People living with dementia also grieve of course, with at least five dimensions described, including grieving the person they used to be and the person they are becoming (Waddington et al., 2024).
Connection and psychological growth remain possible within ambiguous loss; families often move between aloneness and renewed engagement, redefining relationships in ways that make room for hope and meaning (Walmsley & McCormack, 2016, 2018; McCormack et al., 2017).
Structured support for carers, including psychoeducation and support groups, is associated with meaningful improvements in both grief and depression (Sánchez-Alcón et al., 2023).
You do not have to carry this alone
If you are supporting a partner, parent, or family member with dementia, the anticipatory, disenfranchised, and ambiguous losses you might be feeling are normal. At Upside Stories, Bruce works with family carers navigating this kind of fluctuating loss, alongside the practical and emotional load of caring, drawing on evidence-based approaches and a relaxed, unhurried focus on meaning-making rather than rushing, fixing, or moving on before you are ready.
To explore your therapy needs , book a free 20-minute consult today.
References & reading
Boss, P. (2004). Ambiguous loss research, theory, and practice: Reflections after 9/11. Journal of Marriage and Family, 66(3), 551–566. https://doi.org/10.1111/j.0022-2445.2004.00037.x
Boss, P. (2010). The trauma and complicated grief of ambiguous loss. Pastoral Psychology, 59(2), 137–145. https://doi.org/10.1007/s11089-009-0264-0
Dehpour, T., & Koffman, J. (2023). Assessment of anticipatory grief in informal caregivers of dependants with dementia: A systematic review. Aging & Mental Health, 27(1), 110–123. https://doi.org/10.1080/13607863.2022.2032599
Doka, K. J. (2002). Disenfranchised grief: New directions, challenges, and strategies for practice. Research Press.
McCormack, L., Tillock, K., & Walmsley, B. D. (2017). Holding on while letting go: Trauma and growth on the pathway of dementia care in families. Aging & Mental Health, 21(6), 658–667. https://doi.org/10.1080/13607863.2016.1146872
Nathanson, A., & Rogers, M. (2020). When ambiguous loss becomes ambiguous grief: Clinical work with bereaved dementia caregivers. Health & Social Work, 45(4), 268–275. https://doi.org/10.1093/hsw/hlaa026
Rando, T. A. (1986). Loss and anticipatory grief. Lexington Books.
Sánchez-Alcón, M., Sánchez-Ramos, J. L., Garrido-Fernández, A., Sosa-Cordobés, E., Ortega-Galán, Á. M., & Ramos-Pichardo, J. D. (2023). Effectiveness of interventions aimed at improving grief and depression in caregivers of people with dementia: A systematic review and meta-analysis. International Journal of Mental Health Nursing, 32(5), 1211–1224. https://doi.org/10.1111/inm.13142
Waddington, C., Flanagan, K., Clements, H., Harding, E., van der Byl Williams, M., Walton, J., Crutch, S., & Stott, J. (2024). Grief and loss in people living with dementia: A review and metasynthesis of qualitative studies. Aging & Mental Health, 28(3), 408–421. https://doi.org/10.1080/13607863.2023.2280925
Walmsley, B. D., & McCormack, L. (2016). Synthesis of meaning: Negative and positive change in family members following the adversity of dementia. Journal of Humanistic Psychology, 56(2), 122–143. https://doi.org/10.1177/0022167814557547
Walmsley, B. D., & McCormack, L. (2017). Severe dementia: Retained social engagement during family visits. Aging & Mental Health, 21(12), 1262–1271. https://doi.org/10.1080/13607863.2016.1220923
Walmsley, B. D., & McCormack, L. (2018a). Dementia: Aloneness, social and relational engagement, and psychological growth in families. OBM Geriatrics, 2(4), 1–34. https://doi.org/10.21926/obm.geriatr.1804013
Walmsley, B. D., & McCormack, L. (2018b). Moderate dementia: Relational social engagement (RSE) during family visits. Aging & Mental Health, 22(8), 960–969. https:// doi.org/10.1080/13607863.2017.1326462
