Understanding the Unique Nature of Grief in Dementia

Grief and loss are universal human experiences, but for people living with dementia, the grieving process can be profoundly complex. Dementia alters how individuals think, remember, and communicate — yet their capacity to feel emotion can remain deeply intact. This means that while the person may struggle to recall details of a loss, they can still feel the weight of sadness, confusion, and longing. 
 
Traditional models of grief, which assume a linear emotional journey or cognitive understanding of death, do not always fit. As research shows, dementia affects not only short-term memory and reasoning but also the way emotions are processed and expressed. For people with dementia, grief might manifest less in words and more through behaviour: agitation, repetitive questioning, withdrawal, or distress. Recognising these signs as possible expressions of grief is a crucial step for care professionals.

The Layers of Loss: Anticipatory, Situational, and Bereavement-Related Grief

Grief in dementia takes many forms — and often multiple types can overlap. 

• Anticipatory grief begins at diagnosis, when the individual starts to mourn the loss of identity, independence, and future plans.
• Situational grief arises from major life changes such as moving into a care home or losing the ability to manage daily tasks.
•  Bereavement-related grief follows the death of a loved one — a process made more difficult by cognitive and communication barriers.

Each type of grief demands sensitivity and flexibility from caregivers. For example, a person who no longer remembers a loved one’s death might still experience emotional echoes of loss without understanding why. It is essential to validate those feelings without insisting on rational explanations.

What the Research Tells Us

While research into grief among people with dementia remains relatively limited, the work that does exist offers valuable insight for care professionals. 
 
O’Riordan et al. (2022) found that people with intellectual disabilities often experience complicated grief that is under-recognised and under-supported. This finding mirrors what many professionals observe in dementia care — where emotional distress is too often medicalised rather than understood as grief. 
 
A particularly significant contribution comes from Watanabe and Suwa (2017), who conducted an observational study within care home environments, focusing on older adults with dementia who had lost a spouse. Their research found that the mourning process varied depending on the stage of dementia the individual was experiencing. 
 
In the early stages, some participants demonstrated immediate recollection of the death and expressed clear sadness and longing. Those in moderate stages often experienced delayed or fluctuating remembrance, where grief resurfaced intermittently as fragments of memory returned. In contrast, individuals in advanced dementia frequently showed inability to recall or cognitively process the death, but still exhibited signs of emotional unrest — restlessness, agitation, or tearfulness — when reminded of their spouse. 
 
These findings suggest that grief in dementia is not a uniform experience but one deeply influenced by cognitive capacity, memory retention, and emotional awareness. It reinforces the need for stage-appropriate interventions: early-stage individuals may benefit from gentle truth-telling and reminiscence, while later-stage residents might respond better to validation, comfort, and sensory-based reassurance. 
 
Their research underscores what many dementia specialists already intuitively know — that grieving with dementia requires not a single strategy, but a flexible, compassionate continuum of support. 

Ethical Care and Therapeutic Approaches

Supporting a person with dementia through grief often involves ethical and emotional dilemmas. Should we tell the truth about a death if it causes distress? Is it ever acceptable to use “therapeutic lying” to comfort someone? 
 
James et al. (2019) explored this concept in dementia care, finding that while therapeutic lying is commonly used, it must be applied ethically and with understanding. A compassionate “blended approach” — balancing honesty with emotional validation — often proves most effective. 
 
Validation Therapy, as studied by Erdmann & Schnepp (2016), offers another valuable tool. By meeting people within their reality rather than correcting them, caregivers can reduce distress and foster connection. The therapy has been shown to lessen reliance on medication and improve overall well-being.

Case Study: Albert and Emily — Clinical Reflections from Practice

This case study is drawn from the author’s own clinical practice as a Specialist Care Home Advisor, supporting care home teams with complex dementia and behavioural presentations. It illustrates how a blended, person-centred approach can transform both outcomes and relationships. 
 
Albert, a gentleman in his late eighties with vascular dementia, had lived in the care home for several years alongside his wife, Emily. When Emily was diagnosed with terminal cancer, she moved to the nursing section of the home, where Albert visited her daily. As her health declined, visits became shorter and more distressing for both. Following her death, Albert’s family — deeply concerned about how he might respond — chose not to inform him or involve him in funeral arrangements, believing this would protect him from distress. 
 
Within weeks, Albert’s emotional state deteriorated. He began pacing the corridors calling for Emily, refusing personal care, and occasionally lashing out in frustration. His sleep and appetite declined, and medication provided little benefit. The staff team, uncertain how to respond, expressed growing concern and moral distress. 
 
As part of the author’s role, a comprehensive multidisciplinary review was convened with the GP, Community Mental Health Team, and home leadership. The focus shifted from managing behaviour to understanding Albert’s distress as an unresolved grieving process. 
 
The first step was staff education and reflective supervision. Through guided sessions, the team explored the concept of grief in dementia, the ethics of therapeutic truth-telling, and the use of validation. This process helped reduce anxiety among staff and gave them a shared language to discuss Albert’s needs. 
 
In parallel, the family received structured emotional support, facilitated by the dementia specialist. They were encouraged to share memories, express their fears, and reconsider earlier decisions made in love but rooted in protection. Over time, the family began to understand that Albert had a right to grieve, even if that grief looked different from their own. 
 
An individualised care plan was co-designed with staff and family: 
- Validation through Albert’s words – Staff responded to Albert’s repeated questions with his own comforting phrase, “She’s gone to live with the angels,” validating emotion while avoiding distressing confrontation. 
- Reminiscence-based interventions – Photographs, mementoes, and music associated with Emily were gently reintroduced to maintain emotional connection. 
- Environmental comfort – Familiar items from their shared room were placed near Albert’s bed to provide continuity and reassurance. 
- Monitoring and review – Emotional and behavioural patterns were tracked daily to adapt approaches and measure progress. 
 
Over six months, Albert’s distress gradually subsided. His sleep and appetite improved, and incidents of agitation decreased significantly. Staff reported increased confidence and emotional satisfaction in their roles, noting that “Albert seemed more at peace.” The family expressed gratitude that the team had honoured Albert’s love for Emily with compassion rather than concealment. From a clinical perspective, the case demonstrated the power of integrated, stage-sensitive grief support.

Supporting the Whole Care Network

Grief in dementia does not occur in isolation. Families, staff, and other residents often share in the emotional ripple effects. Harrison-Dening (2023) highlights the importance of supporting families in navigating truth-telling decisions and preparing emotionally for repeated grief episodes. 
 
For staff, education and mentorship are vital. Caring for someone through dementia-related grief requires emotional resilience, ethical clarity, and teamwork. When teams agree on consistent responses and share reflective practice, they can support one another while maintaining compassionate care.

Practical Guidance for Care Professionals

1. Share news of a loss gently and promptly, using clear language appropriate to the person’s understanding. 
2. Offer consistent responses when questions are repeated — consistency builds security. 
3. Encourage reminiscing through music, photos, or familiar routines. 
4. Validate emotions rather than focusing on factual accuracy. 
5. Monitor behavioural cues and adjust interventions accordingly. 
6. Engage families in open dialogue about the person’s right to grieve. 
7. Reflect as a team — supervision and shared learning reduce burnout and promote empathy.

Moving Forward: Advocacy and Research

The field of dementia care urgently needs more research into how grief manifests and how best to support it. As Pepper, Carter, and Harrison-Dening (2025) argue, supporting people with dementia through loss demands individualised, compassionate strategies grounded in both evidence and empathy. 
 
Caregivers are not just witnesses to loss — they are companions through it. By recognising grief as part of the human experience, even in cognitive decline, we affirm dignity, personhood, and connection.

Final Reflections

Supporting people with dementia through grief is one of the most profound responsibilities in adult social care. It asks us to balance truth and tenderness, to see beyond behaviour to emotion, and to uphold the right of every person — regardless of memory or cognition — to feel, express, and process loss. 
 
Grief may not follow a predictable path, but with patience, empathy, and understanding, we can walk that path together — helping those we support find peace, comfort, and meaning, one gentle step at a time.

References

• Duffy, F. & Ballentine, J. (2020). Supporting a person with dementia following bereavement during the COVID-19 pandemic. Northern Health and Social Care Trust.

• Erdmann, A. & Schnepp, W. (2016). Conditions, components and outcomes of integrative Validation Therapy in a long-term care facility for people with dementia: A qualitative evaluation study. Dementia, 15(5), 1184–1204.

• Harrison-Dening, K., Hayo, H. & Reddall, C. (2023). What You Really Want to Know About Life with Dementia. Jessica Kingsley Publishers, London.

• Harrison-Dening, K. & Aldridge, Z. (2021). Understanding behaviours in dementia. Journal of Community Nursing, 35(3), 50–55.

• James, I., Mills, R., Jackman, L. & Mahesh, M. (2019). Key dimensions of therapeutic lies in dementia care: A new taxonomy. OBM Geriatrics, 3(1).

• O’Riordan, D., Boland, G., Guerin, S. & Dodd, P. (2022). Synthesising existing research on complicated grief in intellectual disability: Findings from a systematic review. Journal of Intellectual Disability Research, 66(10), 833–852.

• Pepper, A., Carter, T. & Harrison-Dening, K. (2025). Grief, loss and adjustment for people living with dementia. Nursing Times, 121(7).

• Spreadbury, J. & Kipps, C. (2019). Understanding anticipatory grief in people with dementia. Dementia Journal.

• Watanabe, A. & Suwa, S. (2017). The mourning process of older people with dementia who lost their spouse. Journal of Advanced Nursing, 73(9), 2143–2155.