Receiving hospital care when you have dementia

How can you make sure someone with dementia is treated well if they’re admitted to hospital? Here’s what you need to know

Going into hospital is stressful for anyone, but for a person with dementia it can be traumatic. Coping with an unfamiliar noisy and clinical environment, filled with sounds, smells and people they don’t know, might be very scary and disorientating. It’s hardly surprising that many carers fear their loved one will go downhill during a stay in hospital.

But the good news is that there are lots of things you can do to make the experience less difficult.

1. Get organised

If they’re going into hospital for a planned procedure, you have time to get their hospital bag ready. Consider putting some discreet name tags on clothes, underwear, slippers and robes. Incontinence pads are probably available in hospital but they may feel more comfortable using items they’re familiar with, so pack them too.

Tip: Include a few items that might make the hospital environment feel more homely. For example, a favourite photo, drink, or packet of biscuits to keep on their bedside table. Pack a recent prescription from your GP, it could be useful for staff.

2. Give staff information about your loved one

It’s very important medical staff know that the person you’re caring for has dementia. They may not have time to sit down and discuss their condition in lots of detail, so it might be a good idea for you to write down any essential information you think would help them to care for your loved one.

For example, ‘she’ll prefer to be called ‘Mrs Smith, not ‘Mary, or ‘when she’s feeling anxious she may start walking around’. ‘She might need reminding to drink or she hates having a shower and prefers a bath in the evening.’

You could include a few key points about their life before dementia, too. For example, ‘she used to be a teacher so she might get a bit bossy!’ or ‘She has eight grandchildren she’s very proud of.’ Any information that can help staff understand your loved one could be beneficial, and might make life on a hospital ward a little easier for everyone.

Tip: You might like to put a photo of her when healthy next to the bed to remind hospital staff who she is.

3. Arrange a meeting with their named nurse

Every hospital patient should have a named nurse in charge of their care. The nurse will probably be very busy but should still be happy to have a meeting with you and hear any concerns you might have. The amount of knowledge and awareness nurses have about dementia varies considerably, but even if experience is limited, they should be willing to learn. After all, part of their remit will be to ensure every patient – including those with dementia – receives person centred care.

Tip: Ask if you can help. For example, if you’re worried that your loved one could refuse to eat or wash without you there, you might be able to arrange to come in at certain times of the day to assist.

4. Think ahead

Preparing for their discharge when they’ve just gone into hospital may sound odd, but it’s important you start considering it as soon as possible. Where will your loved one want to go when they’re told they can leave? Can they return home? Will they need more help, or equipment than they did before? How can this be arranged? If they’ll be convalescing with relatives, will their home need to be assessed? If a move to a care home seems likely, the sooner you start looking the better. Start by reading this guide to choosing the best. Remember, even if their discharge seems a long way off, arranging residential care can be time-consuming, funding issues can be complicated and nobody wants to stay in hospital longer than they need to.

Did you know? Some elderly patients are trapped in hospital for up to 30 days longer than necessary, despite being fit enough to leave, because they’re waiting to be transferred somewhere appropriate to their needs, usually a residential home.

5. Not happy with the care?

If you have any concerns, write them down. Make a note of when it happened, and any particular staff who were involved. Then arrange to see their named nurse to discuss it. If you’re not happy with the outcome, take your complaint to the ward manager. Still not satisfied? Contact the hospital’s Patient Advice and Liaison Service (PALS). This is a special service offering confidential advice, support and information on health related matters. Each hospital has a PALS officer who can be contacted by patients, families and carers.

6. Help yourself too

Don’t underestimate how stressful a hospital admission can be for the carer as well as the person with dementia. Carer stress and depression is all too common and if the admission was sudden, it might have been a terrible shock. Even if you’d known about it in advance, seeing your loved one looking frail and confused in a hospital bed can be very upsetting.

Tip: Accept any offers of help that come your way – whether it’s an invitation to dinner or a lift to the hospital - and don’t feel guilty about taking some much needed ‘me-time.’

Good to know

Hundreds of UK hospitals have become part of a national scheme to help people with dementia. If the hospital your loved one is admitted to has joined The Butterfly Scheme it means staff have received special dementia training and will make sure that patients with dementia receive the support and care they need, both practically and emotionally, during their stay. The scheme was created by a carer whose mother had dementia. Find out more about the scheme here.