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Relatives of residents in nursing homes with dementia should be treated as key workers, say major charities.
In a letter to the health department, they write that the care provided by family members is “essential” to the residents’ mental and physical health.
They argue that the current limits on visitors have had “damaging consequences”.
They want visits to resume safely, with relatives having the same access to nursing homes and coronavirus tests as the team.
Signed by the heads of major charities, including Dementia UK and the Alzheimer’s Society, the letter asks the government to “urgently address” what it calls the “hidden catastrophe” that happens in homes.
A spokesman for the Department of Health and Social Care (DHSC) told the BBC he would release more details “soon” on how he can “carefully and safely” allow visits to nursing homes.
In April, DHSC said in a document that everyone “family and friends should be advised not to visit nursing homes, except close relatives in exceptional situations, such as the end of their lives”.
Charities say this “forced separation” has caused a “deterioration” in residents’ mental and physical health, especially for those living with dementia – who make up more than 70% of the population of the household.
They argue that family caregivers remain “essential members of the residents’ assistance and assistance network”, providing practical services, in addition to being their “lawyers, voice and memory” and “keeping them connected to the world”.
They are asking Health Secretary Matt Hancock to publish detailed home visit guidelines and give certain relatives and friends the same “key worker” status as team members – which would allow them the same access to nursing homes and tests of coronavirus.
During the pandemic, there were 5,404 excess deaths – an increase of 52.2% compared to the five-year average – of people with dementia and Alzheimer’s disease in England and Wales, according to the Office of National Statistics (ONS).
‘I only have one mother’
Rosie’s mother has severe dementia and lives in a nursing home.
For months, she was unable to visit, but when she did, two weeks ago, Rosie was shocked.
His mother was “quite fallen in the wheelchair”. It took a long time to respond.
The image caption Rosie, portrayed as a child with her mother, says that she used to receive visitors every day
Rosie could see that it had changed a lot.
Worse, in the past fortnight, her mother stopped eating, refusing to open her mouth when domestic workers try to feed her. Rosie is now concerned that she too may refuse liquids and die.
Rosie is relieved that the secretary of health is promising guidelines for allowing visits – but is also concerned that this may limit how this can happen.
Before the coronavirus attack, Rosie’s mother received visits every day from family or friends.
They stayed with her for at least an hour, talking to her. Rosie sang Motown songs that her mother loves.
“Her face would light up, she would try to sing along,” she said. Sometimes she would bring food or take her out of the house. She liked to go to the pub.
Rosie says she wants to sit with her mother at home after taking the Covid-19 test and wearing PPE
Now that her mother is much worse, Rosie would like to be treated in the same way as a paid worker, to be allowed to enter the house and sit with her mother.
It would be tested for Covid-19 and use personal protective equipment (PPE). This is something that leading dementia charities are saying should be made possible under new guidance.
“I am her voice, her lawyer,” says Rosie.
“I should be with her. I only have one mother. I’m not prepared to let her die without me there.”
In the letter, charities claim that the “inconsistency” of visitor guidelines in UK countries is causing “additional confusion and stress” for suppliers and family members.
In Scotland, homes without a virus for 28 days were able to receive visitors from 3 July.
In Northern Ireland, as of Monday, virus-free homes can allow one person to visit at a time, with a second person accommodated “whenever possible”.
In Wales, visits have been authorized to care for homes and their residents since June 1, provided that they are carried out outside and 2m rules of social distance and hygiene procedures are followed.
Care England, which represents the majority of independent providers, says new guidelines in England are essential – and “it is not right to keep people with care and support needs locked up indefinitely.”
We don’t know why @DHSCgovuk
is unable to make quick decisions in times of crisis. As the country is unlocked, caregivers are left in the dark as to what is allowed in terms of visitors to their residents, or even residents leaving home on visits.
– Care England (@CareEngland) July 7, 2020
Nicci Gerrard is the co-founder of John’s campaign and also signed the group’s letter.
The campaign was created after his father, John Gerrard – who suffered from Alzheimer’s disease – died in November 2014, after being admitted to the hospital without people he knew.
She describes the effect of the blockade as a “slow motion catastrophe” that has not yet been fully recognized.
Gerrard says, “We received hundreds of messages from family caregivers who used to come in regularly and who are desperate for what’s going on.”
She says that for many residents, family members are “the link to the outside world; they are the voice and the memory”.
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Jane Prudhoe, 90, says the blockade left her depressed
One Dementia Voice, the leading UK dementia organizations led by John’s Campaign and the Alzheimer’s Society, said they welcomed Hancock’s response to the group’s letter, but added that it was necessary to see the “details”, including whether family caregivers will receive important information. worker status.
A spokeswoman said it is vital that family caregivers take the same “safe, regular and repeated test as key workers, so that they can safely return to nursing homes and care for their loved ones with dementia that no one else can “.
Despite the lack of guidance, many households in England have allowed visits from relatives, but generally only once a week per person and for very limited periods.
They check the temperature of the visitors, question them and insist that the meetings take place outside, at least 2 meters apart between residents and visitors.
Image caption Some homes have allowed socially distant visits for relatives