People providing essential care aren’t ‘visitors’

Hospital patients with dementia should have loved ones close by

I recently received an urgent call from an acquaintance whose mother with dementia was en route to a hospital’s emergency department. This was her third hospital admission during the pandemic. Due to COVID-19 visitor restrictions, this family knew they faced an uphill battle to gain access to the bedside to provide care to their mom.

I coached them to use the phrase “essential care partner for a person with dementia.” This allowed them bedside attendance in emergency, but once their mother was admitted to the hospital ward, their access was again severely curtailed.

On their allotted biweekly visiting days, they witnessed her declining. Previously living independently, she was now staring blankly at her meals, with dry mouth, unable to walk unassisted. These symptoms of dehydration and delirium are common in hospitalized seniors, especially with dementia.

The family contacted hospital nursing management, opening the door to daily access. The patient flourished with family providing care and was discharged. Sadly, she could not return to her home and moved instead to a retirement residence. Six weeks later I learned that they had to drop their mother off at the door of the retirement home and access to provide essential care was again severely curtailed.

All of this could have been avoided by simply including dementia as a reason to allow unquestioned access for essential care partners at the bedside with COVID-19 visiting protocols. This access is already acknowledged as necessary in pediatrics, labour and delivery, and palliative care. Instead, hospitals use overarching terms like “limited capacity, age-related issues, disability or chronic health concerns.” I know these include dementia but I’m not sure the COVID-19 screeners or the general public understand this.

How could this happen? In his directives to hospitals, Dr. David Williams, Ontario’s chief medical officer of health, consistently uses the term “visitor,” seemingly unaware of the critical needs of people with dementia and disabilities. Care partners are not visitors! They are essential providers of daily health care. His directives explicitly exempt pediatric and palliative care visitors from restrictions of access. Patients diagnosed with dementia are glaringly overlooked.

Is this ageism? Probably. Is it fear of COVID-19? Certainly. Is it cost-effective and humane? Absolutely not. Seniors with dementia alone in hospital have become collateral damage with falls, delirium and fractures creating unnecessary and preventable health-care costs.

Dementia, called the “invisible disability,” is often unnoticed by health-care providers. You should not have to plead your case for daily bedside involvement to frazzled nursing staff and exhausted health-care workers. If you are a caregiver for someone with dementia you are essential to their care.

After a year of advocacy and discussion, Peterborough Regional Health Centre has amended its guidance to frontline staff to explicitly cite dementia.

Though the public wording of the visiting policy has not changed on the website, the good news is that families should now automatically receive daily access on disclosing a diagnosis of dementia.

As of May 4, PRHC is ensuring that people with the diagnosis of dementia admitted to hospital for illness or surgery, will now be allowed to designate two essential care partners for daily bedside care as part of the hospital care team.

With this privilege comes responsibility. Adherence to full infection control protocols will be strictly enforced. The essential care partners will sign a “Partners in Care” pledge and will be given identification, PPE, enhanced infection control training, and special training in dementia.

The protocol includes the introduction of personalized “All About Me” and “My Routines” documents to be posted (with consent) at the bedside, encouraging all hospital staff to recognize the person alive inside the dementia.

All people living with dementia and their care partners in this community should feel reassured by this commitment.

If you are a caregiver for someone with dementia you are essential to their care