The Keepsake Chronicles: stories in times of dementia

Researchers from Trinity recently launched new universal design guidelines to enhance quality of life, sustainability, and resilience in long-term residential care settings for older people in Ireland.



The diversity and changing nature of resident needs, health conditions, and dependencies, as well as the range of visitors and staff who typically occupy an LTRC setting, necessitate a welcoming and inclusive environment.

And the new guidelines will help to provide the kind of accessible, safe, comfortable, and adaptable design required to support these diverse and evolving needs.

Funded by the Health Research Board, this project was led by Trinity - by Desmond O’Neill, Professor, School of Medicine, and the Centre for Medical Gerontology as Principal Investigator, in collaboration with experts from the TrinityHaus Research Centre in Trinity’s School of Engineering (Tom Grey, Dr Dimitra Xidous, and Jennifer O’Donoghue).

Members of the research team at the launch of the new Universal Design Guidelines for Long-Term Residential Care settings.

The COVID-19 pandemic, which disproportionately affected older persons and particularly those living in LTRC settings, really shone a light on the need for new guidelines to deliver improvements.

"While the primary impacts of COVID-19 were illness and death, the secondary impacts of isolation, loneliness, lack of physical activities and social interaction that resulted from infection control measures were also devastating to people living in these settings," said Dr Xidous.

"That’s one reason why the design of future LTRC settings must fully consider how a more resilient built environment can enhance infection control, while also maintaining quality of life during a pandemic."

But this resilience must also extend to the impacts of climate change, including such hazards as storms, flooding, or heatwaves. Wider sustainability issues such as biodiversity are also critical, along with management and use of energy - not just in terms of climate change mitigation, but also in terms of adaptation and security of supply through economic or climate-based disruptions.

Finally, continuing to live in your own home is a major part of "ageing in place", but research tells us that is also about a continuity of community, staying close to family, friends, and local services, and remaining in familiar environments where a person has a strong sense of place.

In this understanding of ageing in place, it becomes vital to carefully consider the location & community integration of LTRC settings so that people can move to a local setting and maintain their sense of place.

The new guidelines address the complex and interconnected issues and challenges described above through a LTRC Planning & Design Framework, which includes:
  • Core design values: Quality of life and Quality of Experience; Inclusion through Universal Design; Sustainability & Resilience
  • Evidence based design across key spatial scales
  • Key Design Considerations including overall UD Principles; Key LTRC design issues, and a range of sustainability, climate adaptation and resilience topics
  • Good practice exemplars and case studies used to illustrate the design guidance
  • Levels of Design to illustrate how important features range from minor to major interventions
  • An Engagement & Co-creation Strategy to facilitate collaborative planning and design


"Eleven LTRC facilities from across Ireland served as case studies for facilitating the research, and without their engagement the work would not have been possible," added Dr Xidous.

"Finally, and most importantly, we would like to thank all the residents, their families and friends, and staff, who were kind enough to take the time to participate in the research, and who provided essential insight into their lived experience of residential long-term care."

The LTRC facilities that engaged closely with the research team were: Anam Cara Housing with Care, Fold Housing; St Joseph’s Centre Shankill; Glenaulin Nursing Home; Peamount Healthcare; Newtownpark House; St Brendan’s Community Nursing Unit; The Village Residence; Haven Bay Care Centre; CareBright; St Brendan’s High Support Unit, Mulranny; and Ballyshannon Community Hospital.

Other key investigators and collaborators were Age Friendly Ireland; Age Action Ireland; Health Service Executive; the Centre for Excellence in Universal Design; London School of Economics and Political Science; Nursing Homes Ireland Care Champions; O’Connell Mahon Architects; Maastricht University; Built Environment Consultant Bill Benbow; and Ann Coyle.



Keepsake Chronicles is a collaboration between a nurse, a creative writer and a photographer. As participants tell their stories, we record their words and photograph them in the act of telling. This captures expressions rich with emotion that are inseparable from the stories themselves.



Alex Kornhuber, Principal Investigator, The Keepsake Chronices, Trinity College Dublin and former Atlantic Fellow, Global Brain Health Institute (GBHI), Trinity College Dublin

Shutterstock / Kittyfly

When someone speaks in a language we do not understand, we do not assume their words are meaningless. We assume we are the ones who cannot yet understand them.

You might try gestures, sign language or the few words you recognise to grasp what they are saying. The assumption is always the same: meaning is there. The challenge is translation.

Listening to people living with dementia can sometimes feel similar.

Communication may become slower, fragmented or difficult to follow. It can be tempting to assume that meaning has disappeared. But often the problem is not the absence of meaning. It is that we are struggling to recognise how that meaning is being expressed.

People living with dementia are often trying, sometimes with remarkable persistence, to show us what they mean. Our role becomes something like that of a translator. As with any translation, something may be lost in the exchange, but the essence of meaning remains.

Sometimes that meaning appears in small, unexpected ways. A person who repeatedly asks to "go home", for example, may not literally mean a building. They may be expressing a need for safety, familiarity or comfort. When we listen carefully, the emotion behind the words often becomes clearer.

For people living with dementia, maintaining that sense of self remains deeply important. As research on narrative identity shows, the stories people tell about their lives help them hold together a sense of continuity and meaning, even when memory or language become more difficult.

Social withdrawal, however, is both a risk factor for and a common symptom of advancing dementia. When people withdraw socially, their opportunities to make sense of changing circumstances, relationships and identity diminish. Over time, this can erode self-worth.

The Keepsake Chronicles are storytelling groups for people living with dementia in the community. Participants are invited to bring an object that is meaningful to them, something they have owned for a long time. Objects are tangible. For people living with dementia, physical objects can cue sensory and autobiographical memory in ways that abstract questions often cannot. They can anchor memory and provide a scaffold for storytelling.

Keepsake Chronicles is a collaboration between a nurse, a creative writer and a photographer. As participants tell their stories, we record their words and photograph them in the act of telling. This captures expressions rich with emotion that are inseparable from the stories themselves.

We also photograph the object and then imagine the sense of place embedded in the story, finding ways to recreate it. Sometimes we capture a place as it exists. Sometimes it no longer does, and we respond creatively.

The recorded stories are transcribed and shaped into micro-narratives or poems using only the words and phrases spoken by the person living with dementia. This approach is often described as found poetry, a literary equivalent of collage. Because it preserves a speaker’s own words and rhythms, it allows meaning and emotion to emerge even when speech is fragmented or non-linear.

These stories are deeply embedded in geography. (Participant) Seamus brought a large salmon that had been stuffed by a taxidermist and spoke of his life as a keen fisherman in Mayo.

It was there all’our lives



If you look to the river Moy
today the salmon
have nearly gone extinct
it’s so sad
there’s very little there now,
and if you catch one
you throw it back,
but it’s so sad
No grouse in the bogs,
no bird like you always saw -
the lark, it’s gone now, the curlew,
it’s so sad
It’s so sad when I look at all that;
you take Lough Mask, the Corrib,
the river Moy,
it’s so sad to see them dying.
Now the hatches aren’t in it,
now the birds are gone,
it was there all’our lives,
it’s so sad

dying in front of us now.



(Participant) Sheila told us about moving to America and how her future husband came to bring her back to Ireland. Personal histories are woven into landscapes, rivers and journeys.

Some questions - and answers - about America and Apple Pie



Ten years in America.
I have it all behind me.
Did you eat hot dogs
I did not
Are you a good cook
Reasonably good
I guess
I didn’t poison anyone.
Roast beef on Sunday,
Apple Pie.
Is there are secret to apple pie?
There isn’t really.
How do you do it?
I roll out the pastry.
What kind of apples?
Green apples.
Did they have apple pie in Boston?
They did when I was there...

Stories, meaning and history

Sometimes stories tumble out. Sometimes there is silence. It takes discipline to resist filling that silence. A person living with dementia may need up to 90 seconds to process a question. If we interrupt, we reset that process. This can be deeply frustrating for them. For the listener, the silence can feel endless.

Holding space while someone gathers their thoughts is often what allows stories to emerge. Families frequently tell us they are surprised by what their relatives share, saying they did not realise they still had it in them to tell their story.

The stories and photographs are brought together in a book and returned to each participant. We could talk about reducing stigma around dementia , but the Keepsake Chronicles demonstrate this quietly and powerfully. When someone makes a room laugh, cry or sit in awe, it becomes impossible to deny their meaning and history.

People living with dementia may struggle with word-finding and memory, but they still have something to say. If we listen carefully enough, we can hear the essence of it.

Alex Kornhuber, Principal Investigator, The Keepsake Chronices, Trinity College Dublin

Kate Irving, Professor of Clinical Nursing, Dublin City University

Cathy Fowley, Principal Investigator, The Keepsake Chronicles, Dublin City University

This article is republished from The Conversation under a Creative Commons license. Read the original article .