It’s great that family carers of people living with dementia are becoming better-informed about what to expect from dementia care within healthcare.
You may be aware that the Butterfly Scheme supports not only people with a dementia diagnosis, but also anyone who has the same care needs and no diagnosis; we use an allied (but distinct) symbol, so that the care is delivered, but nobody thinks there’s been a diagnosis when there hasn’t. That’s important, because any support in the community would usually be triggered by a diagnosis and if someone misses out on that, support is unlikely to be forthcoming.
If someone uses the Scheme in hospital and still has the same care needs when they’re discharged, the idea is that the discharge letter to the GP lets them know that and suggests a dementia assessment. However, we have no influence over what the GP does next.
A friend whose mum is showing signs of a possible dementia recently made a GP appointment to request an assessment. Sadly, that particular GP replied that there wasn’t much point in doing an investigation, because nothing could be done anyway! Fortunately, my friend knew enough to point out that blood tests and scans might pinpoint what sort of dementia was present (if any), possibly making it worth trying one of the many medications which could slow down, or even halt, the progress of the dementia. I was glad that my friend had felt confident enough to press for further investigation, but frustrated to hear yet again how variable the response to a request for care can be.
Waiting lists for such investigations can be very long at the moment, but it’s better to be on one than not – and services are only ever going to increase if the demand for them is recognised. Carers should never feel embarrassed to ask for full information or to press for help they know ought to be offered; carers are crucial in the healthcare of those they care for and their advocacy should be respected.
If you use a Butterfly Scheme member hospital, this copyrighted Butterfly logo will be on Patient and Carer information. Carers in those settings should certainly be respected, informed and valued.
If you feel that the person you care for might benefit from using the Scheme – whether or not they have a dementia diagnosis – please speak to a Butterfly Scheme Champion / Dementia Champion. If you use a Butterfly Scheme member hospital, this copyrighted Butterfly logo will be on Patient and Carer information. Carers in those settings should certainly be respected, informed and valued. If you feel that the person you care for might benefit from using the Scheme – whether or not they have a dementia diagnosis – please speak to a Butterfly Scheme Champion / Dementia Champion.