Recognising Dementia Grief: The Hidden Cost of Caring

Recognising Dementia Grief: The Hidden Cost of Caring

There are 5.7 million unpaid carers in the UK who provide essential support to loved ones. Many of these carers are supporting someone living with dementia, including myself. My mum has dementia, and through that personal experience — and my work as a psychologist and coach — I’ve come to better understand one of the most complex and often unspoken aspects of caregiving: dementia grief.

What Is Dementia Grief?

Unlike typical bereavement, dementia grief is a form of “living loss.” You’re grieving someone who is physically present but gradually fading — cognitively, emotionally, and relationally.

The Dementia Grief Model (Blandin & Pepin, 2017) recognises that carers go through a process of emotional separation long before death. This includes loss of shared memories, personality changes, communication breakdown, and the disorienting sense that the person you love is no longer fully “there.”

And yet — you keep showing up.

The Emotional Impact on Carers

Carers supporting someone with dementia often feel:

  • Confused by the changing behaviours or abilities of their loved one
  • Lonely, even while still in the same room
  • Guilty for grieving “too soon”
  • Exhausted by the emotional labour of caring and coping

These experiences are not always recognised — even by the carers themselves. But they matter. Dementia grief is real, and it takes a toll.

Recent UK statistics show:

  • 79% of carers report feeling stressed or anxious
  • 49% feel depressed, and

54% say their physical health has suffered due to caring (Carers UK, 2024)

What can help?

At Cavehill Psychology LTD, I support carers and professionals using psychologically grounded approaches. Here are a few strategies that can help:

  • Acceptance and Commitment Techniques (ACT):
    Helping carers sit with hard emotions without being defined by them.
    “It’s okay to feel overwhelmed. You can still take small steps that matter.”
  • Self-compassion practices:
    Carers often hold themselves to impossible standards. We work on replacing “I should be coping better” with “I’m doing my best in something incredibly hard.”
  • Transition-focused coaching:
    Supporting carers navigating identity shifts — from spouse to caregiver, daughter to advocate, or employee to full-time carer.

How Workplaces Can Play a Role

Many carers are juggling work alongside care. Yet only 13% of UK employers provide manager training on supporting carers.

Employers can:

  • Offer flexible leave and working hours
  • Normalise conversations around caring responsibilities
  • Create carer support networks and signposting tools
  • Train line managers to respond compassionately and effectively

Supporting carers isn’t just the right thing to do — it makes for healthier, more sustainable workplaces.

Final Thoughts

Carers don’t need fixing — they need recognition, understanding, and access to real support.