It’s Dementia Awareness Week and the Alzheimer’s Society is asking everyone across the UK to unite against this cruel disease. Earlier this week I wrote about the lack of awareness about this disease. Today, I’m sharing my experience as a carer.
In November 2016 I left my job as an events manager, something that I’d been doing for 12 years and something that people told me I was good at. There were lots of changes happening at work and the job I had been doing was about to turn into something that didn’t really interest me. At the same time I was caring for someone with dementia who needed more and more support. It seemed to be a sensible time to leave.
Research shows that looking after someone with dementia can put a huge strain on a carer’s physical and mental health. I started this blog so that I would have something else to focus on when time allowed. The therapeutic benefits of crafting on mental health are well known and, at difficult times during the last few months, I’ve certainly found it helpful to be able to switch off and immerse myself in whatever project I’ve been working on.
It’s incredibly difficult watching someone slowly fade away in front of you, unable to do things that were once easy. You often feel guilty, completely inadequate and don’t know what to do for the best. What makes it harder is that there is very little practical help available. As with so many healthcare issues in the UK, it is a postcode lottery as to how much support you will be able to easily access.
Dementia affects everyone differently; each person will have his or her own set of symptoms to deal with. As such, you would hope that there would be a tailored package of support but in my experience this doesn’t happen. Once you’ve had the initial flurry of appointments following diagnosis, and apart from an annual review, you’re pretty much just left to get on with it. There are support groups, but they are few and far between and for some reason where I live, they tend to be in locations that aren’t that accessible to us. There are telephone helplines and excellent online resources, but it’s not the same as having regular support from a specialist who is familiar with you and your situation.
Admiral Nurses are specialist dementia nurses who give expert practical, clinical and emotional support to families living with dementia. I read recently that in my county we have one Admiral Nurse. One. We couldn’t access this service anyway because we don’t live within the district where the nurse is hospital-based. A dementia nurse allocated to each person with the disease should be the norm, just like the Macmillan nurses. Dementia UK is working hard to make this happen.
With other conditions, you can get free care on the NHS. But with dementia, that’s not always the case. You will need to self-fund care if your capital and savings are more than £23k and there’s no guarantee that care providers will have had any specialist dementia training.
If I had more support and training, and if there were more frequent dementia health reviews with specialists, I’m quite sure that numerous trips to the doctors, or stays in hospital, could have been prevented. Multiply this by everyone in the same situation and think how much money our cash-strapped NHS could save.
There are 850,000 people with dementia in the UK. In less than 10 years this number is set to rise to over one million. As the number of people with the disease increases, so too will the number of unpaid carers. Unpaid carers supporting someone with dementia save the economy £11 billion a year, without them our health and care system simply couldn’t function.
If successive governments stopped talking about strategies and plans and got a grip on the urgency of this situation and actually did something, i.e. provide proper funding, we might just be able to avoid total meltdown in our already over-stretched NHS, social care and mental health teams.
Help fix care in your area and unite again dementia.