Narrow confines of clinical dementia stifling opportunities for successful care – treating the care-giver loved one is non-negotiable

Personal experience pushes clinician to widen scope of care

Daniela Russo is a QLD clinical specialist in cognitive therapy and gerontology but her mother’s dementia diagnosis still hit her like a tonne of bricks. For her whole career, of over 30 years, she has been a voracious learner who is fuelled by the clinical care questions that have so far been illusive, in short, Russo has knowledge. But this knowledge, far from solidifying solutions to be only be found in data, her journey has pointed her deeper into the awkward angles of humanity; To try and unlock ways to cope for those with dementia certainly, but in the messiness and exhaustion, in the tedium and negativity, to treat their loved ones as a core part of that care.

Russo knows first hand how a clinical lens can shroud seeing the deeper care problem. With multiple clinical degrees and experience, when her mother was diagnosed in Brazil, Russo “was in denial for a long time, I was telling my mum, ‘you just have menopause’, your symptoms sound like they derive from stress’. She spent a lot of energy clinically explaining it away, “I went in so many different directions, but eventually I had to accept it.” 

Elevated intellect and deeply personal

And then in a flood, the waves of humility, learning and adapting had to start on multiple fronts. Back to ground zero in a foreign nation, Russo threw herself into gerontologist training, starting to work with dementia clients, and academically pursuing a cure for her mother. Academically studying neural pedagogy, she was delving into how the brain could learn with dementia, and applying that to her clients, all the while going through the heartbreak of her mum’s deterioration and eventual death.

For Russo, the pursuit of quality dementia care was ferociously academic, and achingly personal. She wrestled with where to throw her energy for answers. The tension built when her mother shared a book with her, the ‘Language of Love’, at best, in clinical eyes, a significantly quasi-scientific book on the psychology of love and connection. She initially rebuffed it as faery-tale but in the ensuing years, seeing her father apply some of these principles in the pragmatics and grief of dementia care, she decided to give them a go with her clients. She begrudgingly had to admit, there might be something there, outside of the bounds of peer-reviewed clinical studies, that could provide some substance to a disease and care that defies neat boxes and glossy ad-campaigns.

With intellect to spare Russo pinpoints still the bedrock of her gerontology fuel to a personal trigger. “My journey comes from trying to understand my mother.” And yet the box of personal cannot only be constructed around Russo. She forthrightly shares that, “You have to transfer empathy to someone living with dementia yes, but, I can also be managing up to 15 loved-one caregivers, who are full of good intentions and a lot of empathy, and that is not enough, they don’t have the knowledge.” Continuing, “I can have loved ones with high skills, even clinical, they know all about how dementia impacts brain function, and they don’t have empathy or good intentions, that doesn’t work.” She is unequivocal, “it has to be a mix of these things.”

A wider impact zone

Russo treats dementia wherever it impacts. The clinical model that states that a singular human has been diagnosed with dementia is woefully narrow. Russo sees the treatment plan as needing to include that, “the whole family has dementia in their house.” She assesses that time with her clients has made her think the top-down approach of glossy medical brochures and government initiatives miss the point with much well-intentioned gusto, “we talk too much about dignity and rights without the substance of how it actually happens.” Russo herself is still trying to find conclusive answers to that, she is frustrated that “there are so many fairy-tales.” However, far from jerking to the other extreme of despair, Russo pragmatically acknowledges reality, “there’s the ideal and what happens.” She has earned her knowledge through painful moments, “it has to be a mix of knowledge, empathy and good sense.” While likely to be rebuffed from a medical standpoint, common sense is a great ingredient for care. Russo believes dementia care needs all the humans involved to be given space to be messy, to acknowledge the reality and cruelty of dementia, but through the traits of what it is to be human, to support the carers with options.

Clinical studies support that human biology shows we are wired to connect to other humans. We need them in support and how we learn to cope with difficult situations. The brain, in how far pedagogy has come in clinical circles, understands true and sustained learning to be after someone has tried something, failed, tried again, slightly got it, and continued to try and land it. She sees that many clinical marketing campaigns for dementia care, with bright language about how it’s not a burden, the ‘hopes’ about dementia is, “too much conversation, it’s not contributing to substance.” Loved ones caring for those that have dementia need substance and truth, dignity can at least start there.

Caregivers must be part of the clinical model

Russo places building up the caregivers front and center. “At the end of the day, who is caring for someone caring for someone with dementia?” To even start supporting, hospitals, doctors, nurses, clinicians, support at homes executives need to know and honour the mess of dementia care. “They [caregiver] are home alone with their loved one with dementia. It is 3am in the morning.” For what is the countless day in a row, something difficult happens. 

“No one is showing up to tell you what to do. That person [caregiver] has to go into themselves, and start to learn, through putting into practice what they’ve learnt recently from a support worker. They have to have the strength to put the learning into practice. It is only when they do that that learning comes alive.” It is in the exhaustion of doing it themselves, from help given yes, but at 3 in the morning, putting in the work. Russo, “calls my client’s loved ones the specialists”. She asserts, “I am not the specialist. I was the specialist for my mum but not theirs.”

“Dementia is messy” so its care can’t be ‘perfect’

Russo believes the process of supporting means making space to sit in the deep heart-ache that dementia can bring, “My father is a man of faith, his prayers changed from asking for a miracle to having the strength to endure being there for her.” The complicated messiness must have a place in the clinical knowledge brought to bear on all systems engaging with dementia. Russo knows what it is to wrestle with inexplicable pain and consequences of dementia, “I was worried he would go before her because he was so drained from looking after her.”

“Dementia is messy. Dementia is complex. Dementia is sad. It is the most cruel disease of all.”

Russo with knowledge and humanity wears all the hats, “I become a marriage therapist, family counsellor, even legal advisor”, she jokes, talking people down from incredible frustration at their loved one with dementia.

Yet core to her approach she says, “I am a safe place. People come to me to laugh, cry, swear, do a lot of things, validate their feelings. Their feelings are true. They don’t have that space when they go to the GP appointment. I make that space.”

“Dementia is not just the person with dementia. If you have a main care-giver, they become part of the dementia.”

She advocates, “when you treat dementia, you cannot just treat the person diagnosed. You have to treat the caregiver too.” Understanding the reach of dementia is critical, “that other person is under so much stress, that makes the diagnosed more stressed and can impact any therapy, anything that is being done to support. If the caregiver is under so much stress, confusion, that’s going to impact the diagnosed.”

Clinical must honour the reality

Russo has grown in her approach, “this is my job now. To acknowledge, assess, fully immerse in why the caregiver is stressed. Looking and trying to support them. In the reality, in the messiness of human life, the way you approach and support people with dementia has more chance to be more successful this way.” She critically notes that this can result in benefits to the family and whole system, “the client doesn’t need to go early into residential care.”

Russo balances acknowledging reality and striving to equip, with tools, to keep despair at bay, “it’s so easy to fall into the negative and mull on what has been lost, we focus on what they can’t do, ‘my husband can’t remember what they ate yesterday’, ‘they are now incontinent’, so many of us remember the negative.” Yet, “when caring, when limiting to the negative, this is the reality I see for many, life becomes hell, I tell people that if we feed the negative that we are creating a little monster, a dementia monster in your house. That monster isn’t your loved one with dementia, the monster is feeding the negative feelings daily.”

Choice is empowerment

She always seeks to advocate for choice, “If you feed something, it grows, it will take over the house. If you see just the negative, ‘I am so tired, he put the tea-towels in the freezer, he’s hiding things’, I tell them, ‘I can see how that’s stressful but let’s pick our battles’, I offer them the opportunity to laugh, ‘tea-towels in the freezer, how refreshing on a summer day!’ “

Russo hopes the clinical models can be stretched to include being there for the bone-deep fatigue, for the pain of losing someone before they die. This is her methodology, and in that trust, she wants to help carers protect themselves and their energy tanks, “ I suggest, ‘What is more important, getting the medication in or being frustrated about the tea-towels, you can choose to laugh about the tea-towels and save your energy to get the medication in your loved one’ ”. In the cruelty of dementia, it’s never a choice between ice cream or pavlova but it is a choice. Russo will always seek to support loved ones to know they have an opportunity to direct energy to the really hard things, and laugh as much as they can, wherever they can.

She experienced the negative compulsion with her mother, “A human trait is to make negative things more important, we want answers and to validation on feelings, however, my approach is to change the way we look at things, I try to bring humour in my workshops, when people are laughing, that brings down stress.”

There is power in choosing to laugh

In the complexity of it all, Russo shares a result that can only be attributed to the tenacity, nuance and joy that can come through humans. Caregivers have come back to Russo after a workshop, where she, through tears and laughter, offered the choice to laugh where they could.

“I will share a ‘mistake’, that can happen from someone with dementia, and loved-ones have joined in to laugh in my workshop, to chose accepting humour..” They’ve made a point to seek Russo out later, “they share with me after, and they laugh, they say they no longer care anymore about ‘this thing my wife does now’, and before they were so concerned.”

This, this is dementia care. This is strength without platitudes or false promises, this is messy, this is human. Clinical models may do much good to include these realities further.