Presence over perfection – “The ones who stayed didn’t need to fix things, they just listened”, Dementia Action Week reminds us all to lean in

Compliance and regulation have a role to play in aged care. Clinical models, policies and quality standards have led to great strides for the vulnerable across health and aged sectors. But would be remiss to only inhabit these measures of care. Daniela Russo, a cognitive therapist and gerontologist with over twenty years of clinical experience shares the chasm between ‘knowing’ dementia and ‘living’ in the wake of its impact. Her story asks, how can you quantify the impact zone of dementia? How can we help if we don’t have the answers?

Knowing and living

Crossing “T’s” and dotting “I’s” may keep the guardrails up but they don’t have the ears to hear the heartbeat at the center of the equation. From government actors, to aged care CEOs, head nurses and all host of valuable clinical specialties, taking the time to feel the mess of dementia, the space where answers are not is not a negotiable, it’s best practice.

Untethered from the brokenness of the diagnosed and loved ones who care for them, regulation and clinical models become hollow. Russo shares that, while bolstered by academic degrees, in understanding neurologically and how the brain functioned and learnt, didn’t prepare her for the impact zone that dementia had in her family’s life. When her mother was first diagnosed, “we knew the word ‘dementia’ but not the road it would carve through our lives.”

“We didn’t realise it would affect every corner of family life”.

When ‘safe’ is gone

Nothing was ‘safe’ from the clutches of dementia. “time, love, patience, even identity.” Working towards solutions is important for leadership in the sector but there must be space to understand where answers do not come readily. There is no keeping loved ones ‘safe’ from the depth of grief, rage and exhaustion that can come with dementia care. In talking to families, the truth of the limits of medical answers is a painful truth that mustn’t be sugarcoated.

Russo shares the further erosion that uncertainty brought into their lives, they didn’t know how quickly their matriarch would decline. Russo shares, “It was like watching the tide pull back without knowing how big the wave would be when it returned.”

“Some days the change felt slow, almost gentle. Other days it was a cliff, and we didn’t see the edge until we were already falling.”

Layers of loss

To start to support in the reality of mess, there is a place for clinical experts and friends to step into uncertainty. Russo has learnt that uncertainty isn’t a weakness, it can actually be a branch to connect in the confusion and awkwardness of trying to navigate what you thought you understood. Dementia means navigating undulating and ever-changing ground, for the diagnosed and their loved ones. Russo had been taught to treat the patient, that was what clinical models showed, yet when her mum’s dementia journey started, the impact zone humbled that view. “I shouldn’t have been surprised but I was.”

“My dad changed more than I imagined. He became nurse, protector, cook, cleaner, and the only audience for her confusion. He gave up parts of himself quietly — hobbies, friends, even his health — because he thought love meant [complete] sacrifice.”

“The hidden one”

It’s helpful for friends and wider society to know that dementia is not just the diagnosed. For Russo’s family the pain and loss was now extended to another loved one. In the pouring out of care to his wife, Russo’s dad was losing himself too, as a daughter she was losing him as a parent. Her worry fractured and grew a new limb, “It was never just one, it was always both.”

“Mum was the patient, but Dad was the hidden one, the silent patient. Sometimes I worried more about him, because carers can collapse in shadows while the spotlight is on the person with dementia.”

The uncomfortable feelings

Dementia Action Week is about advocating for loved ones, friends, colleagues, those who are in our lives, to lean into relationships where there has been a dementia diagnosis. Even in the awkwardness, even in the powerlessness, being present is the start of the opportunity to bring inexplicable strength in the confusion and mess.

Russo, even as a clinical expert, felt bewildered, and compounding that she was overseas. She had to wrestle with, “complete powerlessness.” She struggled with how to help, “Phone calls don’t hold hands. I tried to send love across oceans, I wrote, I listened, I advocated. But guilt was my companion.”

Fear and guilt need to be acknowledged in care models of dementia, they are real and very present feelings that impact behaviour in wider dementia care. Families have felt friends and wider family distance from someone diagnosed with dementia, and the hurt from that is deep. Russo shares, “Silence is often fear, not rejection. People don’t want to say the wrong thing, so they say nothing. But saying nothing is often the loudest wound.”

For those that have distanced from the awkwardness of not knowing how to help or contribute can also morph into guilt. But guilt doesn’t help anyone thrive. Russo “had to turn that guilt into energy — creating awareness, helping other families, so my distance could still have meaning.” Meaning was the fuel that kept her going, working through feeling she was not doing enough but turning that into purpose for others.

Presence matters – Awkward is okay

Russo and her family experienced the withdrawal of her parent’s friends. Friends became, “distant. Some disappeared. Not because they didn’t care, but because they didn’t know how.”

“Some offered prayers, some sent messages, but many disappeared into silence. Dementia doesn’t just isolate the person — it isolates the family.”

For Russo and her family, it wasn’t about showing up with all the answers to make it all better, it was showing up at all. It was in presence that support, love and strength was found, even in slivers.

Dementia is confusing for those living in its close proximity. Russo even as a professional shares about constantly learning how to help her clients and their loved ones. But critically, and what she wants to be heard resoundingly across the board, it’s to show up. Show up without answers but ready to learn. Show up and feel the moments of awkwardness and difference. Being able to inhabit the uncomfortable feelings is a skill that everyone, clinical professional and otherwise, can practice.

For those that leaned in, that took the chance to be a part of their lives in the mess of dementia, there is a blueprint that can be the tentative steps to be present without answers.

“The ones who stayed didn’t need to fix things, they just listened.”

Helping the loneliness

Russo shares that she saw that her mother could be lonely even surrounded by people. “Loneliness in dementia isn’t only about company, it’s about losing the ability to join in, to be understood.”

Russo has seen in her work that simple moments of connection can impact a client deeply. Breaking through loneliness can be deciding that, even as someone who doesn’t know how to talk to a friend changed by dementia, looking them in the eyes and giving a compliment is a possible simple ‘something’.

Russo is adamant, “compliments are anchors”, something as simple as saying, ‘I love your top’, can say to a friend with dementia, “ ‘I still see you. You are still you.’ ”

And safe touch can also be an option, taking the time to ask if they would like to hold your hand, or “sometimes a smile is enough. Sometimes a hand on the shoulder says what words can’t.”

Learning in the routine

For her father, she saw a different obstacle. “He was from a generation that didn’t share burdens. He would say, ‘I’m fine, she’s the one who is sick.’ But his eyes told me another story. His silences were conversations too.”

Tackling loneliness doesn’t happen overnight. That’s why presence in friendship, in the mess, isn’t just a week, it’s in the long road. It’s in the routine that dementia care can start to weave networks of true support. Russo wants to exuberantly shout from the rooftops for all to hear, for friends and wider family leaning in to be a part of a dementia support network, there is no such thing as perfect support, it’s being courageous to show up at all.

“It doesn’t have to be perfect. It can be messy. A wrong word is better than no word. Just showing up — with a smile, a hand, a story, a plate of food — is already medicine.”

Pragmatic approaches

Russo has seen in her work as a gerontologist, and what would have helped her dad immensely, is that the little things can move mountains. Friends asking if they can pop by to make a carer-loved one a cup of tea, or bring a favourite dessert. can be monumental in the routine and in support.

“Those little gestures are lifelines. A cup of tea isn’t just tea — it’s presence, normality, proof that he wasn’t forgotten. My dad would have carried that comfort in his heart for days.”

Leaning in is trying, not perfection

From her experience with her mum, and two decades as a professional in the space of caring for complicated and layered humans, Russo is more realistic than ever and more confident of the possibility of quality care.

She advocates that all, from clinical experts to friends who have just heard of another’s diagnosis, must honour that, “dementia doesn’t just change the person diagnosed — it rewrites the entire family story.” Instead of distancing, friends, colleagues and loved ones can lean in imperfectly, awkwardly being present in the routine.  

“What I’ve learned is that love must stretch wider, patience must grow deeper, and kindness from even one outsider can feel like light breaking through a heavy curtain.”