Dr James Woods recently graduated from medical school. Here he gives his thoughts on what it’s like to lose a grandmother to dementia and the steps you can take to involve a carer in their treatment.
My grandmother passed away half way through my foundation (FY1) year at medical school.
Over the preceding years, I had seen her gradually succumb to dementia. Throughout medical school I learnt about the pathology of dementia – about neurofibrillary tangles and tau proteins and small vessel vascular disease. I learnt to conduct an Addenbrooke’s Cognitive Examination and about treatment with acetylcholinesterase inhibitors.
But not once did I learn about the real impact that dementia has on both the individual and their carers.
A black hole
Dementia, at its worst, is a black hole of a disease, it sucks the life out of all that surrounds it – there is no escaping its steady march. Over those years, not only did I see my grandmother’s decline but I saw my mother struggle with the brutal reality of caring for a loved one with dementia.
It is an all-consuming task, being a 24/7 career. I saw the parent/child relationship gradually reverse. There would be endless calls from my grandmother through the night: ‘Should I get up now?’ ‘What should I be doing now?’
Mum had to battle with endless paperwork and social work applications and then, despite her best efforts, agonise over the thought and guilt of putting her mother into a care home after she fractured her neck of femur.
Carers aren’t being difficult
Over the years since her death, I’ve had to deal with many relatives of people with dementia in my capacity as a foundation doctor. They are often described as ‘difficult’, because they frequently ask for updates or to speak to the consultant or make frequent demands of the nursing staff.
It is understandable that this can provide challenges to staff in the time- and resource-stretched environment that we often work in. But until you can see the experience from a carer’s perspective, you can never truly understand how hard it is for them.
For ‘difficult relative’, read: exhausted, sleep deprived daughter who has spent every waking (and many sleeping) moment of the last few years caring and worrying about their mother. Then see your approach change.
How can you involve the carer?
If your patient has advanced dementia, try to actively find out who their carer is. Contact them early on in the admission, empathise with the situation and ask how they are coping, take a history from them.
Then involve them as much as possible in their relative’s care – they will often want to be involved, and if they don’t they will at least appreciate that you thought of them. Could you invite them to your MDT or is a case conference needed? Finally, remember to communicate management plans with them – they need to know about changes to medications and follow up appointments, for example.
The General Medical Council’s core guidance, Good Medical Practice requires doctors ‘to establish and maintain partnerships with patients’. If you take away one thing from this piece, I hope you can remember the shared journey your patient with advanced dementia and their carer have been on. Remember that the carer is an integral part of your patient’s life and make every effort to work in partnership with them.
Find out more
James Woods recently graduated from medical school. Both Emma and James are members of Alzheimer Scotland’s National Dementia Carers Action Network (NDCAN) – a campaigning and awareness-raising group whose members all have experience of caring for someone with dementia.
Care for older patients is an increasing priority for many doctors. The General Medical Council have worked with partners including the British Geriatrics Society and Age UK to understand where particular challenges exist and how we can help doctors tackle these. We’ve developed a collection of guidance, tools, signpost and more to support this.
Find out more about the GMC’s Better Care for older people guidance
Related posts: Emma Woods on her tips for caring for people with dementia