Living grief: the quiet goodbye of dementia

Social worker Beverley Dickson gives a moving and insightful personal account
Beverley Dickson and father

We often think grief arrives after the last goodbye, after the funeral, after the flowers fade.

But for families living alongside dementia, or Alzheimer’s, grief begins much earlier. It is not one moment, but a thousand small ones, each with its own sting.

It’s the instant a loved one forgets your name. The moment they no longer recognise the street they’ve walked for decades. The day they look at you with polite distance instead of warm familiarity.

This is living grief – sometimes called ambiguous loss – and it’s one of the least discussed yet most emotionally complex aspects of living with dementia.

“Ebbs and

Flows: grief comes and

Goes.  See, you’re here, yet gone.

Fragile, yet funny; frail, yet strong:

Your smile.”

– The Edge of Grief

The ripple effect on families

Dementia does not only change the person with the diagnosis – it reshapes the entire family. Partners often become carers overnight, and children find themselves stepping into a parental role for their own parents. Familiar rhythms shift, and everyday relationships can be transformed in painful and unexpected ways.

Carers frequently carry a tangled knot of emotions: love and loyalty mixed with resentment, frustration, and deep fatigue. Guilt creeps in — guilt for craving time alone, guilt for moments of relief during respite, and guilt for wishing it were over. Daily life becomes dominated by care schedules, appointments, and practical decisions, while an emotional weight quietly builds.

There are still moments of joy, of course – a smile, a remembered song, a shared cup of tea — but they can feel fragile and fleeting. All the while, grief continues, long before the final farewell.

“I see

Your sparks, chuckles:

Glimpses of you, dancing

To me, who you still are.  You keep

Dancing.” 

- The Edge of Grief

Dementia is both a public health reality and a deeply personal journey — these figures and feelings show why recognising ‘living grief’ matters.

Why social workers need to understand living grief

Over half of my career as a social worker has been working with children with disabilities and their families – supporting them through both the practical and emotional challenges of everyday life. This work has taught me about resilience, and about the unspoken grief that can accompany long-term caring.

But my understanding of living grief did not come from my professional role. It came from my personal life, as a daughter watching my father change under the weight of dementia and Alzheimer’s.

In practice, social workers often meet families amid this quiet, ongoing loss. A daughter’s sharp tone during a home visit, or a husband’s seeming detachment during an assessment can easily be misread as indifference or hostility. Often, these are signs of exhaustion and grief without an accepted end point.

Recognising living grief can validate carers’ experiences, open conversations that have been difficult to start, and encourage earlier access to support before crisis points arise. It can also reassure families that their emotions — even the conflicted ones – are a normal part of the caring journey.

Practical ways to support families

Naming the experience is a powerful first step. Simply saying, “This is called living grief, and it’s a recognised part of the dementia journey,” can help carers feel seen and understood. Normalising the complicated mix of emotions – love alongside frustration, sadness mingled with relief – reminds them that they are not failing; they are human.

Small moments of connection can preserve bonds when words fade. Listening to familiar music, looking through photographs, or sharing a quiet cup of tea can carry enormous meaning. Helping families build support networks early makes the caring role more sustainable, and creative outlets such as writing, music, or art can offer a safe way to explore feelings that are difficult to voice.

Social workers also need to care for themselves when working in this space. Bearing witness to living grief can be emotionally demanding, and reflective supervision is essential for protecting personal wellbeing.

My perspective as a daughter

I did not learn about living grief in a training session. I learned about it in my parents’ living room, watching their relationship shift, observing my mother’s knot of entangled emotions, being at my father’s bedside, and in the pauses between his smiles and gazes. 

“Your eyes

Pierce a knowing

Look.  Then, they glance across

To where you really are: confused,

Away.”

 – The Edge of Grief 

My own coping method was poetry — something I turned to after discovering BASW’s Poetry for Wellbeing in Social Work toolkit. Writing gave me a safe space to express what I couldn’t manage in conversation. Over time, some of those verses became The Edge of Grief, a small collection exploring the emotional reality of this kind of loss. While my book is only one example, the principle is universal: creative expression can be a lifeline, for carers and practitioners alike.

An invitation to notice

Living grief is often invisible and unreleased. It hides behind polite smiles, quiet routines, and busy schedules. But it shapes every part of a family’s life.

When social workers recognise and validate it, they offer more than practical help – they bear witness to the hidden cost of love and care. Sometimes, that recognition can be the one thing a family carries with them long after a visit ends.

The Facts 

  • 944,000 people in the UK are living with dementia – projected to rise above 1 million by 2030.
  • Alzheimer’s disease accounts for 60–70 per cent of cases.
  • More than 42,000 people under 65 have young-onset dementia.
  • Unpaid carers provide support worth £13.9 billion a year.
  • Over 60 per cent of family carers experience anxiety or depression.
  • Average life expectancy after diagnosis is 8–10 years.
  • Dementia – the human impact
  • Every three minutes, someone in the UK develops dementia.
  • Families lose loved ones in pieces, long before the final goodbye.
  • Caring can hold love and grief in the same breath.
  • Small moments – a smile, a remembered song – become treasures.
  • Many carers grieve twice: once during the illness, and again after death.

Beverley Dickson works with children with disabilities and their families and has experienced living grief first-hand while supporting her father. Her book, The Edge of Grief is a poetic exploration of this experience