Advocates for aged care residents are campaigning for facilities to recognise a difference between visitors to aged care homes and family members or friends who provide caregiving services. Their concern is that bans on visitors have left some residents vulnerable, as non-official caregivers have been prevented from providing physical and emotional support during the COVID-10 pandemic.

It’s difficult terrain when the health risks of the virus are still prevalent and facilities are desperate to keep residents safe. Finding a balance between providing a safe environment and allowing caregivers access to their loved ones can be difficult.

International calls for caregiver recognition gain traction

Aged care facilities everywhere began to shut their doors to visitors early this year as the pandemic took hold.

However, it’s this blanket ban on visitors that has brought about a new campaign. It is in response to a concern that visitor bans have deprived vulnerable people of their primary health advocates. Non-official caregivers are not recognised as essential for resident care, regardless of whether their involvement improves patient experience, safety and outcomes. It’s a debate that began long before the COVID-19 outbreak, but has come to the fore as more people are separated from their loved ones for extended periods of time.

Julie Drury, a long-time advocate of family caregivers in healthcare settings, has been campaigning to raise awareness of this issue. Mrs Drury, who lives in Canada, wrote an opinion piece for health publication Longwoods. ‘The rapid shift to highly restrictive policies is understandable given the nature of the COVID-19 crisis,’ she writes. ‘But such policies are very difficult for patients, families and caregivers, causing significant emotional distress. Families and caregivers must remain partners in care, but that partnership may look different during these challenging circumstances.’

The advocacy of Mrs Drury and others in Canada has led to the viral hashtag #morethanavisitor, which aims to promote the distinction between people visiting a resident and an essential caregiver. 

‘Family caregivers often support minor medical procedures, feeding, ambulation, cognitive stimulation, patient hygiene, medication adherence and are often essential in ensuring coordination and continuity of care,’ Mrs Drury explains. ‘We know their presence reduces patient anxiety, supports patient safety and improves the accuracy and quality of shared information. Their role in non-critical care is essential to supporting overstretched clinical team resources.’

On social media, people are sharing tragic stories of their loved ones in aged care who are declining physically and mentally, and in some cases passing away, during the forced absence of their non-official caregivers. Many believe that their family member would not have died if they had been allowed to have contact with them.

The movement sparked petitions to the Canadian government, leading Minister Lisa Gretzky to introduce the More Than a Visitor Act. The bill states that residents have a right to access these caregivers and there should be procedures and guidelines in place to make sure this can happen safely. ‘The government has to ensure that all of these homes have the resources that they need in order to make sure that those visits are happening safely,’ said Minister Gretzky.

#morethanavisitor is now gaining traction outside Canada. In late September, Scottish Parliament noted the example of the Canadian Act and called on Ministers to adopt a similar approach. 

Local solutions for navigating the caregiving balancing act

Maree McCabe, CEO of Dementia Australia, says it’s vital that residents in aged care have access to engagement and communication, especially for people living with dementia. ‘It is important that the human rights of residents, particularly people living with dementia, are at the heart of the decisions we make as service providers,’ Mrs McCabe says. ‘I have heard of carers who have not seen their loved ones since March even when there is no outbreak present. This is unacceptable and it doesn’t have to be this way. Providers, carers, residents and families can work together to find new solutions that work for everyone.’

Mrs McCabe states that non-official caregivers are ‘essential members of multidisciplinary teams’, working alongside aged care staff to supplement support and act as advocates for residents. 

It’s a difficult task to get the balance right between keeping aged care residents safe from the risks of the pandemic and allowing them the support and assistance that their non-official caregivers provide, but Mrs McCabe believes that this can be done. ‘There are a number of innovative solutions facilities can explore,’ she says. ‘Where COVID-19 community transmission remains low, aged care facilities should work to increase the number and variety of visits available. This is desirable because increasing the frequency and duration of visits, while maintaining appropriate screening and infection prevention measures, will improve the wellbeing of residents.’

‘Many facilities have modified visiting rooms or areas to increase the capacity of COVID-safe access and visits. They’ve installed perspex screens, and some homes have used plastic cuddle curtains. There are so many ways essential visits can be continued. Managers can encourage a workplace environment that values and respects the contribution of carers as essential care partners by offering training and resources, when available. Staff can be supported with consistent protocols and procedures, and clarity around roles and responsibilities. Carers and families want to keep residents safe, just as much as staff, and they will comply with infection prevention and control procedures if it means they can be with their family.’

In cases where the risk of in person visits is too high, it’s important that engagement is still viewed as a priority. ‘I am aware of many inspiring, creative examples of engagement with loved ones such as video calls, printing out emails or photos to give to residents and using online resources to engage with people living with dementia,’ Mrs McCabe says.

It is also worth noting that in this debate the voices of policy makers and caregiving advocates are most prominent, but those of the residents in aged care – the ones whose health and wellbeing is being discussed – often go unheard. More needs to be done to engage aged care residents in this discussion and ensure that they are involved in making the decisions that are affecting their lives. 

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