Advice

Being prepared for changes and emergencies when you’re caring for a person with dementia

We asked Dementia together magazine readers and members of our Dementia Support Forum for their advice about preparing for changes when you’re a dementia carer.

Supportive WhatsApp group

Working Wife says, ‘I have a WhatsApp group of friends who live down the road and round the corner. They have agreed to be part of it.

If something happens, like my son forgets to pick my husband up from his daycare or I get delayed at work, I ask for help through the WhatsApp group.

‘I have only needed it once. It’s for emergencies. A friend replied within a minute and was able to avert the crisis.’

Emergency care plans

JMabb says, ‘Sheffield Carers Centre advised an emergency care plan, for which they provided a blank form and prompt sheet. It made me think of many important things that I hadn’t before.

‘Included in it is a print-out of a “Patient Summary” from the GP, which I renew after every new diagnosis or change of medication (free on request from the surgery). It is a list of all medical conditions and current medication which obviates a lot of painstaking list writing.

‘It also includes emergency respite care provided by our favoured care home, but unfortunately, the home can’t guarantee having a respite room available if it were needed in emergency.’ 

Arranging powers of attorney

Starrynight says, ‘If the person you care for still has capacity, make sure they have both powers of attorney in place. 

‘My mother-in-law, who has Alzheimer’s, never did it and it has caused the family several problems.

‘She’s 94 and in a care home. Latest issue was when she needed new dentures. One of her sons arranged to take her to a recommended dentist, but the dentist wouldn’t see her as she doesn’t have capacity and no one has power of attorney! Luckily, my dentist was willing to see her.

‘My husband has vascular dementia. We both have powers of attorney in place.’ 

Assessment and safeguarding

Gill says, ‘Ensure you gain a second opinion if concerned about radical, sudden changes in their dementia behaviour which necessitate a further assessment. 

‘Seek local authority, social services or GP action on how to achieve this important outcome.

‘Safeguarding is vitally important, both for your loved one and yourself. Report immediately any imminent danger to the mental health team.

Recognise from the onset that you matter! Always seek advice and help when needed.’ 

‘Go bag’ and Herbert Protocol

Izzy says, ‘I think having a “go bag” is essential. I always had one ready in case my husband had to be taken to hospital.

‘I had a list of his medications printed out and kept that up to date.

‘I filled in a Herbert Protocol in case he went missing.’ 

‘Message in a bottle’

Canary says, ‘I’ve got a “message in a bottle” which I got from the Lions. It’s a plastic bottle containing all my other half’s details, including NHS number, GP, medication, my contact details and also son’s contact details, among other things. 

The bottle is kept in the fridge and there is a notice on the inside of the front door saying that my other half has one.

‘If something happens to me, then police, paramedics etc will be able to find my other half’s details. 

‘I also carry prominently in my purse a card saying that I am a carer and someone depends on me.’