Another month when anguished carers have emailed me, because their relatives are in hospitals where staff aren’t showing any insight into the care of people living with dementia. Whenever this happens, I always explain that it’s not the fault of the staff; they want to care well, but simply haven’t been given the necessary skills. In 2025, we really should be beyond this situation and good hospital dementia care should be available to all, rather than being a postcode lottery, but there are always positive steps those stressed carers can take.
Every hospital should have a Dementia Lead. Either the ward staff or PALS (the Patient Advice and Liaison Service) should be able to put carers in touch with that person, or someone senior in the team. It’s always advisable to write a list of concerns before speaking to the Dementia Lead – what’s going wrong and what you’d like to see happening instead; a calm conversation is likely to be more productive than an emotional one, however hard that is to achieve when you’re worried about a loved one.
Often, people ask whether they can’t just put some sort of symbol up, but I always advise against that; a symbol only brings a positive response if the person seeing it has a confident, positive response to offer – whereas if they haven’t been given those insights and skills, they’ll probably already think they’re getting the care right; if their experience of caring for people living with dementia has been negative, none of us want that negative feeling to be part of their response to seeing a symbol. Certainly, the Butterfly Scheme’s symbol can’t be used outside of a member hospital or organisation, because when people living with dementia use that symbol, they and their loved ones know to expect a very specific care approach – and that’s not going to be delivered if the education hasn’t been received and maintained.
I’d always advise having specific concerns written into the patient’s notes. That way, all staff reading the notes will be aware of what’s worrying you and they’re more likely to liaise as a team about how to deliver what you’re asking for.
It doesn’t matter whether a hospital uses the Butterfly Scheme or some other specific form of dementia care approach, as long as it’s reliably delivered and you feel confident about the appropriate care of your loved one. You’re right to expect hospitals to care appropriately for patients with dementia and by making your expectations clear, you’ll be helping a hospital to sharpen its focus on this large and important patient group.