Urgent call for government to overhaul dementia care support

Many people with dementia and their carers have been left more isolated during coronavirus. Picture:

Many people with dementia and their carers have been left more isolated during coronavirus. - Credit: Getty Images/iStockphoto

"We thought we were going to lose her - she was going down into a depressive state."

Those are the harrowing words of former nurse Tracey Blazey, 63, from Norwich, who was unable to visit her 92-year-old mother Lilian Bradford, who has dementia, in a care home for most of last year due to the pandemic.

Ms Blazey can now visit her mother after the government changed the rules for loved ones of care home residents and because she has been classed as an essential care giver to provide emotional support for Mrs Bradford.

Describing the impact of the coronavirus lockdown on her mother's mental and physical health, as well as her own, she said: "We got locked out for months. We only had a short opportunity to see mum behind a window or behind a screen or in a tent in the summer. The few times we saw mum, her health had declined so much. She didn't recognise us - she was a ball of anxiety."

Tracey Blazey (right) with her mother Lilian Bradford a few years ago on holiday in Santorini, Greece.

Tracey Blazey (right) with her mother Lilian Bradford a few years ago on holiday in Santorini, Greece. - Credit: Tracey Blazey - Credit: Tracey Blazey

The former nurse, who is a member of the the national action group Rights for Residents, originally set up to fight for loved ones to get greater access to people in care homes in the pandemic, said she did not attend visits in the care home tent because it caused too much distress for her mother.

But since being able to visit her properly, with PPE and testing, she said the emotional and physical health improvements in Mrs Bradford had been dramatic.

"It was like turning on a light switch. She is back to her old self and showing an interest in doing her jigsaw puzzles and crosswords. She is more alert." Ms Blazey said.

The 63-year-old said she had gone through every single emotion possible over the past year adding: "I feel extremely sad about the whole care system. It is broken. Care work is not held in high esteem - the workers are not paid enough. There is also a fundamental lack of understanding of dementia."

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She also believes in future care homes, and centres for people with dementia, should be built  much smaller so the individual focus can be greater.

Pat Abendroth, 59, from Holt, is a full-time carer for her husband Paul, 64, who has Parkinson's disease and dementia, the latter of which was diagnosed in 2018.

She said the lockdown has increased loneliness for both of them.

Pat and Paul Abendroth from Holt

Pat and Paul Abendroth from Holt. Mrs Abendroth is her husband's full-time carer. - Credit: Luke Abendroth

The restrictions also prevented the Holt and District Dementia Support Group's "wonderful" weekly cafe from running for the majority of the past year and temporarily stopped visits from their 32-year-old son, Luke, who can now offer weekly support.

Mrs Abendroth said: "In lockdown we didn't have anything to look forward to. It is a very heavy burden being a carer because you cannot take a day off and cannot be ill. People couldn't pop in for a coffee or a chat. The isolation has been the worst bit."

She added that her husband, a former chef, thrived off listening to other people's conversations which he missed.

The carer said she would never throw in the towel and believed unpaid carers of people with dementia should be listened to more.

Claire Roberts, Holt and District Dementia Support Group chair, said: "The effect on people living with dementia and their carers has been enormous. People with dementia have lost function and speed and have really struggled. We have seen a decline in people's abilities. Many people who are carers are older and have their own health needs."

Claire Roberts, chair of Holt and District Dementia Support Group.

Claire Roberts, chair of Holt and District Dementia Support Group. - Credit: Holt and District Dementia Support Group

She added some carers had put their loved ones in care homes after the pressure of lockdown became too much and strongly believed the social care sector needed to be stronger.

"Carers of people with dementia have felt left on their own. We are happy as volunteers to help but it is an indictment on our society that we have to do this," Mrs Roberts said.

People with dementia and their carers at the Holt and District Dementia Support Group Poppy Cafe meeting in Holt.

People with dementia and their carers at the Holt and District Dementia Support Group Poppy Cafe meeting in Holt in September 2019 before the coronavirus lockdown. - Credit: Holt and District Dementia Support Group

A Department for Health and Social Care spokesperson said: "Unpaid carers have played a vital role throughout this global pandemic and we have supported them with clear guidance, funding for the Carers UK phoneline and prioritised vaccinations.”

Any carers wanting support should call the Admiral Nurse national helpline 0800 8886678 from Monday to Sunday. 

Dementia nurse highlights 'bleak' situation for carers

Zena Aldridge, Admiral Nurse Research Fellow for Dementia UK.

Zena Aldridge, Admiral Nurse Research Fellow for Dementia UK. - Credit: Dementia UK

The coronavirus pandemic created a perfect storm for piling on extra strain for carers, according to a specialist dementia nurse.

Zena Aldridge, from Costessey, who is Admiral Nurse Research Fellow for Dementia UK, said: "Carers were hanging on with their fingernails before the lockdown. A lot has got to be unpicked to build up resilience for family carers and make them feel they can carry on doing that role if they want to."

She praised the work of unpaid carers and described them as a hidden population but said many carers' mental health was at  risk due to the past year.

She said the lockdown had also delayed dementia diagnosis for many people across the country.

Praise for dementia support cafes

Norman Lamb. Picture: Jamie Honeywood

Sir Norman Lamb.  - Credit: Archant

Former health minister Sir Norman Lamb has praised dementia support cafes who adapted their services to help people during lockdown.

Sir Norman, who stood down as North Norfolk Liberal Democrat MP in 2019, is the patron of the Holt and District Dementia Support Group, which carried out a telephone support service and virtual get-togethers for carers when it could not hold its drop-in cafes, which have restarted.

He said: "The last year has been incredibly difficult for people with dementia. It must have been the most testing experience for carers.

"The fact we are still waiting for social care reform is enormously troubling. We owe it to the people of this country to crack this. Politically it is tricky because it involves money but we have to do it because we are failing families the length and breadth of the country."

A London School of Economics report from November 2019 said there were an estimated 16,770 people living with dementia in Norfolk, predicted to rise 37pc by 2030 to 22,370 people.

The same report said that in Suffolk there were 13,580 people with dementia, predicted to increase by 42pc by 2030 to18,770 people.






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