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10th June 2020

John’s Campaign

My mother died of dementia almost 18 months ago. I’ve lost count of the times over the last weeks that I’ve heaved a sigh and said, ‘I’m glad she’s gone’. For the last period of her life Mum lived in a nearby nursing home where I visited every day. She would start to shout for me at 5.30pm – you could set your watch by her, the staff said. I can’t imagine what it would be like, in lockdown, to know that she would still be shouting but I wouldn’t be arriving to answer her. It is too painful to imagine. I wonder how long she’d have carried on – and then what would have happened? A recent British Geriatric Society blog by a GP observed that it is the people living with dementia who have the closest and most supportive families who are suffering most acutely. Many have withdrawn into loneliness, believing that they have been abandoned or their relatives are dead. Some have stopped eating. Others have become agitated and aggressive. Deaths from dementia (non-Covid 19) have risen significantly above the seasonal norms.

People living with dementia are people living with a disability for whom, therefore, it is lawful to make special arrangements (under the Equality Act and Human Rights legislation). The current NHS guidance for hospital visits says that exemptions should be made to the No Visitors rule if ‘You are supporting someone with a mental health issue such as dementia, a learning disability or autism, where not being present would cause the patient to be distressed’. This recognises that emotional support from the closest family member may be essential to resilience and well-being when someone is cognitively impaired. Providing good person-centred care, even during a pandemic, includes recognising and responding to the powerful human need for connectedness, particularly in those who cannot substitute virtual for actual visiting or understand the concept of social distancing.

So how to help?

  • Accept that you are right to be opening up to ‘essential’ family carers. (We hope the hospital visiting exception will soon be accepted across all health and social care settings)
  • Make it clear that, as we are still in a pandemic situation, visits must be managed within an infection control framework – just as they are in wider society. Your most clinically needy residents should be your first priority. (Though don’t forget those of your family members who may also be isolated and suffering disproportionately)
  • Communicate your thinking, your priorities and your future plans to all members of your community
  • Consider the geography of visit locations. Identify the safest routes and cleaning needs
  • Conceptualise the essential visitor as part of the ‘team’. This means implementing the same procedures, e.g. if you take staff temperatures, take visitors’; if you have trained staff in correct handwashing, train your visitors; if you require special clothing to be worn in the building, extend this requirement too. That approach, it seems to me, is fairest towards your staff, whose goodwill and understanding is crucial to make this work. (It also eases the question of closeness and hand holding – staff get close to residents several times a day)
  • Be ready to support the family visitor or resident if the visit is emotionally difficult

Thank you for all that you do in this terribly difficult situation.

John’s Campaign has a website johnscampaign.org.uk. We’re on Twitter & Facebook. My email is julia@johnscampaign.org.uk. I’m only a part time volunteer but do get in touch if you think I can help.

*All information is correct at the time of publishing. Use of this material is subject to your acceptance of our terms and conditions.

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