The invisible patient

TAUREEF MOHAMMED

A CAREGIVER'S story is one of those stories that needs to be told. Sally’s story, although fictional, was inspired by my encounters with caregivers.

“And how have you been managing?” the geriatrician asked.

Up until the question, Sally had appeared to have everything together. She had a pen, notepad and a type-written list of the dozen medications her father was on. She had other important documents – blood results, prescriptions, notes from previous visits – in a plastic envelope which she took to every doctor’s appointment. And her father, who had advanced dementia and had lost the ability to do basic activities of daily living like dressing, looked impeccable.

But now that she was separated from her father – who was busy in another room doing the Montreal Cognitive Assessment exercise with the geriatric nurse – and now that the focus shifted to her, she felt no pressure to make everything appear fine. So, when the doctor asked the question, “How have you been managing?” she broke down.

She had a full-time job and a family of her own – both had seen less of her over the last year. She was contemplating early retirement. Her father moved in with her a year ago, not long after her mother – her father’s previous caregiver – died. As she rattled off her daily duties, those that involved her, her job at the university, her children, her father – just saying everything out loud lightened up the weight a bit – it became clear she had at least three full-time jobs.

She had siblings, but every time their father’s care came up as a topic, the discussion always turned into an argument and the conclusion was always the same: it is what it is.

To make matters worse, she felt many people didn’t have a clue what “it” was. Having read the brochures from the Alzheimer’s Society and completed the online training classes for caregivers of people with dementia, she knew dementia was not “normal” ageing. She knew that caring for a person with advanced dementia required skilled care, a lot of attention, money.

And because she knew dementia was a disease that required special care – just like heart failure and kidney failure – she knew her faith, which said to honour your parents, was not enough to lean on. She needed help from other family members; she needed help from the healthcare system; she needed help from society. When it came to faith and love, she had enough to share.

And when she was finished telling her story – making sure to point out it was not all doom and gloom, that there were moments when she felt she would not swap her role for the world – the doctor diagnosed her: she had caregiver burden. And to stage the level of burden – none, mild, moderate, high – a social worker asked her 12 direct questions about her feelings, a process called the Zarit Burden Interview. On a scale of one to four, she graded each feeling. And with a total score of 30, it became clear why she broke down: high caregiver burden.

Unpaid caregivers like Sally do more for a functionally-impaired person living with a chronic illness at home than any doctor, nurse, or other healthcare worker.

Many studies have looked at understanding the extent of the unpaid caregiver’s role and the consequences of not acknowledging it, especially when caregiving becomes burdensome.

Unpaid caregivers provide 90 per cent of the care needed by adults living with an illness at home; 86 per cent of these caregivers are women, who are two times more likely than men to suffer from high caregiver burden. One in five caregivers spends more than 40 hours per week – a full-time job – providing care. The annual cost of informal dementia care has been estimated at US$56,290 per person with dementia. And, not forgetting, the costs on the caregiver’s health: higher risk of mortality, missed physician’s appointments, weight loss, sleep deprivation.

These figures, based on studies done in the US, were taken from a 2014 article on caregiver burden in the Journal of the American Medical Association.

Describing the caregiver as an invisible patient suffering in silence, the authors said caregiver burden was frequently overlooked.

Taking the weight off unpaid caregivers requires a paradigm shift in how society views ageing at home, especially when an illness that limits functionality is involved.

But before we can help them, we need to first see them.

Taureef Mohammed is a graduate of UWI and a geriatric medicine fellow at Western University, Canada