Remember the person, not the disease

Whenever we visit my grandfather, there’s the potential he may be having an ‘off day’. If and when this is the case, my father may say to me, ‘I hope I’m in the ground before I ever get like that’. But what is ‘that’ exactly? For the most part, he means being diagnosed with dementia, which my paternal grandmother also suffered from for a number of years. Being unable to remember your friends, your family and even yourself the further along this disease grabs you can be totally distressing, both to experience and to witness, so I can understand his mentality.

I’m from a large family – my father is one of eleven siblings – so I’ve observed my fair share of mental illness or, to use a better term, brain disease. For most of my adolescence, I only ever knew my grandmother sat up in bed in a number of care homes, unable to talk, and for the most part, unable to recognise that her son and granddaughter were sat in front of her and trying to make her feel more comfortable. Due to her illness, I’ve been visiting care homes since I was young, and have witnessed the amount of people that are constantly lonely and seemingly left behind. While I don’t discriminate the fact that many of these people did have loving families to visit them, or that they were simply too old to have many people left to do so, it’s heartbreaking to see.

Even coming from such a large family, I was one of only a few people who visited my nan regularly; I’d go at least once every week, sometimes once a fortnight when I had school or exams, while some of my aunts, uncles and cousins didn’t go at all. Many of them cited the reason, ‘I don’t want to see her like that’. For me, this reason never fully washed. In one sense, I can completely understand their point of view; witnessing someone you love slowly forget who you are, forget their own mind, be so ill they’re unable to walk and talk properly, is truly harrowing, and not something I’d wish upon anyone. It was subsequently reported by the Alzheimer’s Society on New Years Day this year that 42% of the British public ‘[are] not convinced people with dementia still benefit a lot from seeing loved ones they no longer recognise’. Personally, I don’t think I could go on living my life properly knowing that my own grandmother was sat in a care home, lonely and unable to verbalise how she really feels – it used to upset me if I had to go a week without seeing her, let alone several months or years. They further reported that 64% of people ‘living with dementia feel isolated following a diagnosis’. Taken from reports written by the Medical Research Council, 68% of people said they would visit someone diagnosed with dementia. However, the MRC go on to explain that not all of the people within this percentage are ever guaranteed to follow up on these claims, partially due to the fact that their reaction may be totally different once they are faced with the reality of having to be a potential carer or witness a loved one’s memories and brain function deteriorate.

My brother didn’t always like to visit our grandmother, which I understood. He was a lot younger then and eventually most of his memories became those of her in a care home; he has even less memories of my nan before she was diagnosed. He probably doesn’t remember too clearly the Sundays she’d come over for dinner, or the times we’d go and visit her flat on a Saturday afternoon to see how she was getting on over in Sutton Coldfield. For me, it was a learning curve having to cope with her situation, and I believe that both of us seeing her regularly throughout her illness helped us to grow up, mature and realise that not everything in the world is perfectly rosy. Dementia affects most, if not all families, at least once.

It is reported by Alzheimer’s Society that approximately 850,000 people in the UK are currently diagnosed with dementia, with 70% of people in care homes being there due to suffering from the disease or from ‘severe memory problems’. This number is staggering, and with the number of people suffering from dementia set to increase to 1 million by 2025 and 2 million by 2051, it is clear that more and more people are going to need care and support as a result. As well as this, it should be noted that not everyone suffering from brain disease are of an old age – there are currently 40,000 people under the age of 65 living with dementia. However, there is a further stigma attached to younger adults being diagnosed with the disease. This in turn hinders the amount of people who actually are diagnosed and subsequently treated and looked after, despite the fact there is currently no cure for dementia. The Medical Research Council reports that people over the age of 55 have a greater fear of being diagnosed with dementia than any other condition, with approximately 1 in 4 hiding their diagnosis from others due to shame and ultimately, the stigma of living and having to come to terms with the fact they have a brain illness.

My grandfather was diagnosed with vascular dementia back in June 2014, which isn’t as common compared to 62% of people diagnosed with Alzheimer’s (the most common form of dementia); only 17% of diagnoses are vascular. I’d like to think that constantly visiting my grandmother when I was growing up has helped gear me up to deal with my grandfather’s slow deterioration, especially as by the time he was diagnosed following major heart surgery, I was 18 and considered by many to be an ‘adult’. It is never easy to see a loved one suffer, especially someone you look up to as much as I do my grandfather, however the stigma of dementia and brain disease needs to be overcome by more. For me personally, it will only cause more regret and upset when that person is no longer here and you wish you’d spent more time with them, regardless of them no longer knowing who you are. Those suffering from dementia need care, attention, love but perhaps most of all, they need the awareness that you’ll still be there for them when they aren’t there for themselves.

Helpful links to find out more or to seek support:

Alzheimer’s Society / Dementia Friends / Age UK

I originally wrote this piece as a feature article in my student newspaper, Redbrick. However, as you can probably tell from the personal experiences I’ve written about here, this piece was written due to the sheer frustration and upset I’ve experienced and still experience on a daily basis when dealing with the stigma and nature of dementia. I only hope it brings more awareness.