COVID-19 pandemic adds to confusion for dementia patients

In full PPE gear Charlotte finds it difficult to recognise her daughter. She then questions why she has to wear a mask, before the heartwrenching "when can I go home?"

For most of January, residents at Charlotte's aged care home in Canberra were locked down. Confined to their rooms and unable to receive visitors, the situation would be difficult for anyone. But for people with advanced dementia it was particularly challenging.

Ms Scouller said her mother's condition significantly deteriorated during this period and the results were "heartbreaking".

"I've seen her dementia advance, and watched her become more unsettled. So, we're back to a point of her asking 'when can she go home' whereas [previously] she had settled," she said.

"It's a use it or lose it situation, and one of the things that really helps people living with dementia sustain a normal life style of living for as long as possible is social engagement."

This follows anecdotal reports of people in aged care forgetting the identity of family members when they were finally reunited.

In addition, masks and head-to-toe protective gear can be very confronting for people with dementia. With no understanding of how the virus has derailed and changed the outside world, restrictions, rules and new realities can be especially hard to grasp.

ANU expert in geriatrics and mental health, Professor Nicolas Cherbuin, said a decline in senses, a symptom of dementia, could make interactions with carers "frightening", with residents unable to see faces, interpret emotions and communicate.

He said there had been "a lot of confusion" for aged care residents since the pandemic began.

"There's less staff, there is less stimulation, there are less activities and family members can't come. When [dementia] gets worse then they simply can't make sense of what what is happening," Prof Cherbuin said.

"They just don't understand ... they might think that somebody is attacking them, that they are being kept in prison."

While Ms Scouller could make video and phone calls to her mother, stretched staff numbers meant her calls often went unanswered with her mum unable to work the phone in her room.

A "situation report", published early February, revealed providers had reported about one-quarter of shifts - about 140,000 per week nationwide - were going unfilled.

Dementia Australia chief executive Maree McCabe said caring for people with advanced dementia was especially challenging, with some providers "so short-staffed that even providing basic care needs has been almost impossible".

"It's been incredibly difficult to be able to provide the level of care that is needed. And on a consistent basis because of the unpredictable nature [of the past two years], we had COVID, then we had Delta, then we had Omicron," she said.

"[The pandemic] has been devastating in its impact."

This follows reports of some aged care homes across Canberra showering residents every second day due to staff shortages.

Ms Scouller said she was "not surprised [aged care] is currently falling off a cliff".

"There are no surprises that it is short-staffed. Staff are underpaid and, quite frankly, operating on staff resident ratios that are unacceptable," she said.

Research has shown people with less social engagement have a higher risk of not only developing dementia but also accelerating its decline.

Leading Aged Care Services Australia chief executive Sean Rooney said maintaining regular connection was particularly important for those living with dementia.

As a result a visitor access code - developed by peak bodies across Australia - was currently under review.

Mr Rooney hoped it would "further point to the importance of maintaining access to loved ones in a safe way".

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Meanwhile, in response to prolonged lockdowns in aged care homes across the country, new visitation guidelines for residential aged care were adopted by the federal government in mid-February.

The new guidelines seek to balance the risk of infection to older people against the known impacts of social isolation. As a result, residents are able to receive one essential visitor at all times, evening during an outbreak.

However, the guidelines are not compulsory, with some aged care homes not adopting the recommendations.

Interim guidance states the known impacts of prolonged isolation include: reduced physical health, fear, anxiety, loneliness, boredom, depression, malnutrition and cognitive decline.

Previously under ACT Health guidance, visitors were allowed into aged care homes during coronavirus outbreaks - but only for essential reasons.