People with dementia symptoms grew ‘rapidly worse’ during lockdown, inquiry told

People with dementia symptoms seemed to rapidly worsen during the first Covid-19 lockdown in Scotland as a result of the sudden withdrawal of care services and their enforced isolation, an inquiry has heard.

Henry Simmons, chief executive of Alzheimer’s Scotland, told the Scottish Covid-19 Inquiry that the worsening of symptoms was just one of several negative impacts the 2020 lockdown had on the charity’s clients and their families during the pandemic.

Mr Simmons, who has led the charity since 2008, said people also experienced a negative impact on their wellbeing and mental health through the loss of support networks when the lockdown barring physical contact between individuals from different households came into force.

He added he felt it was an “unreasonable expectation” that families would be able to step in and entirely take over the work of carers while support networks were shut down, and this had caused added stress and friction within relationships.

Mr Simmons told the inquiry in response to the growing “crisis” in the early days of the lockdown keeping people apart that he formulated a detailed proposal to reopen day centres to help people struggling to look after themselves or their relatives.

Reading from a pre-prepared statement, he said: “Once we realised how the infection travelled we could understand some of the reasons why it could be difficult for us to do what we wanted to do.

“But we got stronger in saying the impact on people was so significant that we were seeing people in the early stages of dementia jump to a more advanced stage rapidly.”

Asked by senior lead counsel Stuart Gale KC to return to the point later in the evidence session, Mr Simmons reiterated: “It looked like people who were in the earlier stages were moving very rapidly to the mid-stages.”

Asked if a causal link had been established, Mr Simmons replied thorough research would have to be conducted to prove or disprove such a link.

He added: “It was quite clear to us that because of the lack of any other forms of intervention to support someone living with dementia and reduce their symptoms, their symptoms were getting far worse.”

Mr Simmons said he felt dementia care fell down the list of Government priorities as the pandemic continued and it seemed to him “blanket decisions” were being taken at the time to stop people mixing.

He said he argued an existing dementia policy team should have been made a directorate during the pandemic with the power to deal with issues specific to how people with dementia were being cared for.

Mr Simmons also told the inquiry of the trauma experienced by families of people taken to hospital during the first lockdown who never saw them again before their death because of the ban on visitors at the time.

He said support staff often had to take panicked calls from people worried about how their relatives were being looked after and this had a “huge” impact on them.

“I would have staff members needing to be supported by our senior leaders to deal with that because they were receiving calls of that nature quite frequently,” he said.

“For some people, that was the last time they saw their loved one and they then had to deal with the grief and the trauma of that.”

Mr Simmons also said his organisation had no involvement in any pandemic planning and was never approached by the Scottish Government to become involved in such planning prior to Covid-19 emerging as a threat.

Asked to read the concluding remarks of his pre-prepared statement, Mr Simmons told the inquiry to allow another lockdown of the kind imposed in 2020 with all its restrictions again in the future would be “horrific”.

“Everything about supporting someone with dementia is personal,” he said. “It’s face-to-face, community-based support and using non-pharmacological therapies.

“To take that away again would be horrific.”

The inquiry before Lord Brailsford continues.