Hospital visits are in jeopardy again in certain parts of the country. It is easy to understand why hospitals wish to reduce risk of spreading the virus, but the damage done to confused and scared patients is often irreversible when no-one is on hand to speak on their behalf. A hospital stay for someone living with a condition like dementia is already traumatic enough, and at a time of immense pressure on hospital staff who clearly cannot be expected to find the time to sit with a person and reassure them, odds are a stay in hospital will significantly worsen their condition.
No hospital wishes to send home a patient in a worse state than when they arrived but sadly that is often what happens, even prior to the pandemic. It is the worst place for a person with dementia to be, and the longer they stay the lesser the chance they’ll have the same level of independence on returning home, or even be able to return home. Dementia is rarely the cause of a person going to hospital, but it is often the reason they can’t leave.
Many hospitals have signed up to a code drawn up by Johns Campaign that gives carers the right to stay with their loved one. Covid should not be a reason for withdrawing that right (obviously subject to a negative test) but it appears to be happening. Even where the hospital policy allows for exceptions, the message may not make it down to ward level and primary carers are denied access.
On the other hand, it is not always practical or possible for a carer or family member to be at their loved one’s side 24/7. I fully admit to a sense of relief at the prospect of an uninterrupted night’s sleep when my late husband Geoff was admitted for an operation that required an overnight stay. At the time I had no idea of the potential for disastrous consequences a hospital stay can have for someone with dementia, but I also had other commitments that meant I could not have stayed with him even if it had been offered.
I would always encourage carers to request the right to be with their loved one if their circumstances allow. Hospitals need to recognise the value of a carer’s presence for the wellbeing of the patient. But there are other things relatives can do to mitigate the effect of a hospital stay, such as sending in with the person photos and familiar items that may give them comfort. Best to avoid irreplaceable items when possible however, given the tendency for things to be misplaced.
There have been some excellent blogs written on this topic, amongst them this one by DementiaWho: https://dementiawho.com/dementia-hospital-emergency-go-bag/
Finding a way to share information about the things that matter to a person can make a big difference. There are a number of resources available to help, including the one I developed in the light of Geoff’s experience, called the Mycarematters profile. I created it online because of the numerous times I heard about paperwork being lost or left behind, plus it makes it easy to update and share. It can be viewed online by anyone with your name, date of birth and Mycarematters code. It can also be printed out and is designed to fit on one side of A4 because staff do not have time to read a long document, and a single sheet of A4 can be displayed by the bed.
Whichever method you use, providing information about a person’s needs and preferences when they are not in a position to communicate those things for themselves can help hospital staff avoid exacerbating what is already a stressful situation.
And of course, this is not just about people with a dementia diagnosis. Any of us can end up in hospital and may temporarily be unable to communicate. Creating a profile of your needs and preferences is one of those tasks we should all complete. We include a paper version of the Mycarematters Profile for those not wishing or able to use the internet in the My Future Care Handbook.