Why we need to stop turning away from dementia

I’m 40 now. When my father was my age, he was already more than halfway through the years he’d spend untouched by dementia. He had just turned 70 when we started to ask the doctor questions about what was happening to him.

I’ve been talking a lot about a midlife crisis recently – I got my first three tattoos in quick succession, I gave up alcohol and took up cold water swimming. If this really is my midlife, then I’m one of the lucky ones.

If only my father could have made it to 80 before getting dementia, it would hurt less, surely. Or maybe it wouldn’t. (It could have been worse, I know, I know.)

Dementia was in the news a lot when I turned 40 last autumn, mainly because people were wondering whether Biden had dementia, or perhaps Trump did. Dementia was a way of speculating over fitness for work, for governing. A way to smear someone’s character, to label unexpected behaviour or incoherent words.

Perhaps anyone in their seventies or eighties would come under suspicion in this way. The word suspicion is apt for the way this is viewed by a lot of people, the sense that the person with suspected dementia is doing something wrong, hiding something bad.

People avoid the reality of dementia by treating it like something to be uncovered and eliminated. They believe people with dementia should be disqualified from official functions, that they’re to be feared and mistrusted at once. They need to be put to one side where we don’t see them anymore. Then we move on with proper governance, real society.

I suppose because dementia usually happens later in life, it can also become part of the way society tends to marginalise and overlook older people, that feeling that the older you get, the more invisible you become. I hope this is beginning to change.

Of course, these conversations about Biden and Trump also undermined the seriousness of living with dementia, throwing around a very specific medical diagnosis to win political points.

They unhelpfully associated words like ‘unhinged’ and ‘unstable’ and ‘paranoid’ with an experience that is so much more than that, with my sweet dad. They stigmatised people who are just trying to get by with what little help they’re being offered.

As the Alzheimer’s Society pointed out in an excellent blog post on why we shouldn’t diagnose dementia from a distance in this way, “Language affects the way that people living with dementia are treated by others”. Talking in this way in the media makes it harder for people to understand what dementia really is, and could stop people from discussing it with family and friends, and even getting a diagnosis. Dementia is not a political weapon; it’s something people are living with every day in our communities.

If we could incorporate people living with dementia into society more, rather than fearing them, marginalising them, it would be a less painful experience for their loved ones. (Still painful though, I know, I know.)

I couldn’t agree more with the Alzheimer’s Society when they say: “We want a society in which people living with dementia feel understood, valued, and able to play an active role in their community”.

Employers can make adjustments to ensure people with a dementia diagnosis can continue to work for as long as possible. It can mean so much to your sense of self and quality of life to be able to keep doing your job, even in a slightly different form as the dementia progresses.

I am always happy when I see dementia cafés and clubs popping up in my local area, for people with dementia and their carers to meet others, socialise, and do activities they love or maybe new ones. Instead of hiding away at home behind closed doors, to be welcomed into community spaces.

When I could still take my father for walks to cafes and parks, I sometimes wanted to apologise to the people we interacted with, to explain that he was acting strangely because he had dementia. I occasionally saw fear in people’s eyes as they edged away from this erratic old man, my beloved dad, lurching along the hot London pavement in his Panama hat and two sweaters on a muggy summer’s day.

I wouldn’t want to be remembered that way, people say.

They didn’t realise that I could still sit with my father and listen to Verdi’s operas, we would smile, he still felt it, the way the music always moved through him and me, reaching us somewhere deep inside, the welling of an inner spring, of bliss.

They didn’t realise my young son didn’t need anything from my father, simply ran over to hug his legs with joy when he greeted him. Before my father went into the care home, when my mother was still helping look after my son in those days before he started school, my father would often sit and watch my son play on their living room floor, just smiling.

And that was enough for my son. He loved having his grandfather there with him as he pushed Hot Wheels along a mat of roads.

Memory is everything – having it, preserving it, passing it on, leaving it. And learning not to turn away.