Holding On While Letting Go: Trauma and Growth on the Pathway of Dementia Care in Families
There is a moment many families and carers describe in almost identical terms — a day that arrives with paperwork, practical necessity, and an ache that defies explanation. The day they hand over the care of someone they love to an unfamiliar system of aged care.
For such families, the emotional meaning is rarely spoken about. Even in the best of care home settings, guilt, grief, and a sense of having failed the person they most care about can remain long after the transition for many families. Yet research suggests that within such painful experiences, something else is also possible — an unexpected capacity for growth.
What the Research Shows
A 2017 qualitative study published in Aging & Mental Health by McCormack, Tillock, and Walmsley explored the lived experience of nine family carers supporting a family member living with severe dementia within care home settings underpinned by a medical model of care.
Using interpretative phenomenological analysis — a method designed to honour the depth and complexity of individual experience — the researchers identified one overarching theme: navigating system control. Families described moving through a system they experienced as simultaneously threatening and comforting, authoritarian and humane — a complex maze requiring ongoing vigilance just to remain involved in the care of their family member.
Three interlocking sub-themes gave texture to this experience:
Connecting and Disconnecting
Families described an exhausting cycle of reaching for inclusion in care decisions, only to be pushed back by a system that often treated them as secondary. When staff oriented the care home as the home of the person living with dementia, and when genuine rapport developed between staff, resident, and family, participants felt a palpable sense of relief. They relaxed. They trusted.
But that trust was fragile. Medication changes made without consultation, invalidating communication from health professionals, and an adversarial institutional culture sent families back into a state of hypervigilance. One participant described the moment a hospital doctor threatened to have her husband admitted as an involuntary patient — a moment that crystallised the feeling of being powerless within a system ostensibly designed to help.
The struggle to remain an advocate for their family member living with dementia — to be seen as knowing this person deeply, not merely visiting them — was constant and sometimes demoralising.
Windows Closing
As dementia progressed, families faced a different kind of loss: the closing of windows of communication and recognition. The moments of connection became smaller, rarer, and more precious. Behavioural changes — confusion, agitation, aggression triggered by the disorientation of a new environment — added layers of vicarious distress for families already stretched thin.
Guilt was pervasive. Participants spoke of blaming themselves for placing their family member in care too soon, of questioning their duty, of feeling they had failed in the most fundamental relationship of their lives. The grief was not a single event but a rolling accumulation — each lost window of recognition, each aggressive outburst, each moment of not being known, adding weight to what one participant called an internal wound.
Researchers noted that this distress had characteristics of both primary and vicarious trauma — direct and second-hand exposure — experiencing and witnessing helplessly alongside threatening, disorienting, and grief-laden events. Yet this dimension of family caregiving had, until this study, been largely unacknowledged in dementia care models. (McCormack, Tillock, & Walmsley, 2017, p654).
Finding Capacity for Sensation
And yet — something unexpected also emerged. When speech communication fluctuated and closed, some families found a new doorway: sensory connection.
Touch, movement, music, and rhythm became new languages of presence. Participants described walking with their family member to open-up conversation, dancing together as a form of communication, kneeling face-to-face so eye contact could do what words no longer could. One participant spoke of her husband holding her hand tightly as she prepared to leave — uncertain whether he knew her name, but certain he knew she mattered.
This shift — from language-based relating to sensory presence — was not just a coping mechanism. For many families, it became a source of unexpected joy, connection, and even humour. The relationship had changed profoundly, but it had not ended.
This aligns with emerging evidence that a sense of touch may remain accessible even in later stages of dementia, when other senses have diminished (Nicholls, Chang, Johnson, & Edenborough, 2013, as cited in McCormack et al., 2017). Therapeutic approaches such as the Namaste Care programme in Australia have built on this understanding, recognising that people living with dementia retain the capacity both to give and receive touch as a form of meaningful communication.
Who Carries this Experience
Most of the primary caregivers in this study were aged in their fifties to eighties — daughters, son-in-laws, husbands, wives, partners — who had been caring for their family member for an average of five years before the move to residential care. The transition did not end their caring role; it transformed it into something more complex, more contested, and in many ways more emotionally demanding.
This role of caring was also witnessed by, and supported by younger family members — grandchildren — in their twenties — highlighting how distress radiates across the generations of families involved in caring for someone they love. The lost opportunities to protect and re-establish dignity visibly confronted these younger family members, as dementia in a grandparent advanced:
The environment … it was all foreign … it’d be like being lost, and not knowing where you are … She just sat there with her fingers in her ears, and didn’t eat. (McCormack et al., 2017, p. 662).
Does guilt after placing a family member in a care home ever go away?
Research indicates that guilt in dementia family caregivers is common, persistent, and often disproportionate to the actual decision made. It tends to be self-directed and ruminative — looping back over the same questions and perceived failures. With time, psychological support, and opportunities for meaning-making, many caregivers are able to reframe their decision with greater compassion for themselves and recognition of what they gave (Tedeschi & Calhoun, 2004; Joseph, 2011).
The findings of McCormack and colleagues suggest that psychological wellbeing and distress are not opposites in this context — they coexist. Growth does not erase grief. But grief, when navigated with support and self-awareness, does not have to foreclose growth either.
What Families Need
This research points to several meaningful implications for how we support dementia families.
First, acknowledgement matters. The guilt, grief, and traumatic distress that families carry when they transition care are real psychological experiences — not signs of weakness or over-attachment. Naming them as such, and offering genuine support, is itself therapeutic.
Second, inclusion in care is protective. When families are treated as collaborators — as people who hold irreplaceable knowledge of their family member living with dementia — rather than as visitors to be managed, their distress is measurably reduced. Care home cultures that honour this make a significant difference.
Third, connection does not require words. Families who discovered sensory ways of staying present with their family member living with dementia — through touch, movement, music — found that the relationship, in its transformed form, could still carry meaning, joy, and intimacy. This is worth knowing, especially for those who feel that advancing dementia has already ended the relationship.
If you are a family caregiver, or have been one, consider: Is there a way you have stayed connected that surprised you? A moment of recognition, warmth, or presence that came through touch, sound, or simply being there?
About Upside Stories
At Upside Stories, we work with families navigating the emotional complexity of dementia care — the grief, the guilt, and the unexpected moments of connection that this experience can bring.
If this article resonated with you, we'd welcome a conversation. Reach out for a free 20-minute consultation to see if Upside Stories is the right fit for you and your family on this journey.
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References & reading
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
Joseph, S. (2011). What doesn't kill us: The new psychology of posttraumatic growth. Basic Books.
Nicholls, D., Chang, E., Johnson, A., & Edenborough, M. (2013). Touch, the essence of caring for people with end stage dementia: A mental health perspective in Namaste care. Aging and Mental Health, 17(5), 571–578. https://doi.org/10.1080/13607863.2012.757581
Tedeschi, R. G., & Calhoun, L. G. (2004). Posttraumatic growth: Conceptual foundations and empirical evidence. Psychological Inquiry, 15(1), 1–18. https://doi.org/10.1207/s15327965pli1501_01
