There is no getting around the fact that Channel 4’s documentary Anna Richardson: Love, Loss and Dementia does not make for easy viewing. There were moments I had to pause so that I could sob.
An unflinching but vital watch and with the backing of the charity Alzheimer’s Society, it is the first piece of television to shed an unfiltered light on the physical, emotional and financial impact of life’s cruellest illness.
In the same way that Davina McCall sparked a national conversation with Sex, Myths and the Menopause, this documentary uncovers the hidden reality of a condition that is barely spoken about yet is Britain’s biggest killer.
Anna shares the story of her father’s dementia and travels across Britain to meet families living, or rather existing, invisibly behind closed doors. Every story resonated and along with the tears, watching it brought a flood of relief that finally, FINALLY, we’re talking.
Four months ago, I lost my vibrant, twinkly pocket rocket of a mother to this secretive, dignity-robbing disease, which only those who have endured it can truly understand.
One in three of us will develop dementia in our lifetime, yet the condition is still cloaked in stigma and spoken about in hushed tones, much like cancer was in the 70s.
‘Why aren’t we talking about this?’ asks a frustrated Anna. It’s a fair question.
We first see her father, former vicar of Leeds, Canon Jim Richardson OBE, after he’s had a fall in his sheltered accommodation. He can’t remember having stumbled. He is living with vascular dementia, brought on by a stroke some years earlier, and we witness the daily challenges his illness brings. Long divorced (he dreads the thought of a care home) it is down to the TV personality, who lives on the other side of the country, and her siblings to drop everything whenever a crisis occurs.
They are at the stage where they can still enjoy a conversation and each other’s company, Anna wheeling him to the local pub and chivvying him along when he takes an age to decide between fish and chips and chicken. Their relationship, like mine was with mum, survives on patience and goodwill but mostly humour. ’The humour takes away some of the sting,’ says Anna, a statement that could not be truer.
The same cannot be said for Richard and Mary, a couple who Anna visits in their rural farmhouse. A landscape architect, Richard anxiously paces up and down as Mary explains that she has hidden the kitchen knives because her husband has become increasingly aggressive when he doesn’t recognise her. He has raised his fists and she is frightened.
‘I’ve completely lost this person,’ she tearfully explains. ‘I have no resilience left. I’m ground down completely.’ He is only 55 and is living with Alzheimer’s, the most common form of dementia.
Instead of enjoying her middle years, running her fashion design business from the studio in their garden, Mary has become her husband’s carer. Their savings have been drained to pay the £27k a year required for 15 hours a week help, the only respite she receives.
Sadly, we later learn that Richard’s behaviour has become so unmanageable the family have reluctantly placed him in a home, selling the house to fund his care. We did the same, selling mum’s bungalow when my sister, bone tired with exhaustion, could no longer cope.
New research by Alzheimer’s Society reveals a shocking and devastating lack of support offered to those living with dementia, with loved ones (mostly female family members, with notable exceptions) forced to pick up the pieces where health and social care have failed. It’s a scandal of our time that would not happen with any other major illness, a ticking time bomb that gets progressively worse with each generation and has been kicked down the road by every government in recent years.
And buckle up, because this disease is not just an old person’s problem. It’s an everyone problem. I lost my heart to 29-year-old Jordan who we see with fiancée Agnès**.** They are excited about their wedding, but instead of discussing gowns and guest lists their worries are focussed on when Jordan will begin to show signs of dementia, having inherited the gene from his beautiful mother. She died at 52 from frontotemporal dementia, with symptoms starting in her 40s**.**
We see Jordan undergoing cognitive tests and he gets nervous at not being quick enough with the mental arithmetic. He says the condition, that will certainly hit him in his 50s, has given him ‘a license to live’. However currently his only hope is to join a drugs trial at some point in the future.
The good news is that there have been recent remarkable breakthroughs in dementia medicine, most notably the Alzheimer’s drug Lecanemab, but while it has been approved for use in the UK, cost has prevented it from being available on the NHS.
In the hour-long documentary there are stories of resilience as well as heartbreak. There is Michaela who was so frustrated by any lack of social outlet for her nan, she set up her own fortnightly dementia café where anyone with the condition can come along for a natter. She serves cake and tea from pretty china cups and saucers, all paid for out of her own pocket. The experience that most mirrored mine is the stage that is least talked about – the end.
We see Kayleigh, who has courageously shared her mum’s descent with dementia on social media. Like my mum, she loved her clothes and cared about her appearance: ‘she was super proud, she wouldn’t leave the house without a full face of makeup’, says Kayleigh. We go from photographs of a glamorous, vivacious woman, to how she is now - a tiny, mute shell in a care home bed.
This is the point at which I lost it because this was my mum. I only once posted a picture on Instagram of mum in her final weeks. It was last Mother’s Day, and she was in her nursing home, a sparrow propped up in a wheelchair, surrounded by family. One person DM’d me to say the image had upset her, but I felt strongly that dementia shouldn’t allow my utterly loved mum to disappear. It is an outcome we are all collectively terrified of, which has resulted in national silence. The knock-on effect is no funding or support because none of us is shouting about it.
Anna says making the documentary is the most difficult thing she has ever done in her career. It could also be her most important. Let’s join her and start shouting.
Share your story to help Alzheimer’s Society bring dementia out from behind closed doors alzheimers.org.uk/stories