Four daughters carry out Instagram takeover to raise profile of dementia for World Alzheimer’s Day

• The Hewitt sisters share candid posts on Alzheimer’s Research UK Instagram account about how they operate a ‘tag team’ to care for their mum, Laura, full-time despite all have busy lives with their careers and families.
• Laura, 61, is living with posterior cortical atrophy, a rare form of dementia.
• Scans on the Instagram account, @dayinthelifeoflaws, show how much Laura’s brain has shrunk.
• Another post shows the difference between Laura’s work as a talented artist, compared to drawings which now show only scribbles.

It’s 7am on a Monday morning. Lauren Hewitt, 27, makes a cup of tea for her mum Laura, before rushing out the door to her PR job in London. Her youngest sister, 24-year-old Tilly, gets up and heads downstairs on her day off from working as a hairdresser to spend the day with their mum.

Laura, 61, is living with a rare form of Alzheimer’s disease called posterior cortical atrophy (PCA), which is caused by damage to the brain cells at the back of the brain that make sense of what our eyes are seeing. She is no longer independent and requires someone to be there for her 24 hours a day.

After a morning walking the family’s three Labradors with her mum, Tilly makes her mum lunch, and then takes her to the gym, which her 28-year-old sister Harriet owns. There Harriet gives her mum an adapted training session to keep her healthy, something which she still enjoys and needs as part of her daily routine.

Later on, their oldest sister Ruth, 30, picks up her baby from his childminder after a day at work, before she arrives back at the family home and settles herself in the kitchen with Laura to make the whole family dinner.

The family’s cleaner, Cheryl, has become more of a friend and carer to Laura than was ever anticipated, and comes to the house from Tuesday to Thursday to allow Laura’s daughters precious time to concentrate on their careers.

Together the family, from Arkley, Hertfordshire, say they have made dementia work around their lives, rather than working their lives around dementia, but it would not be possible without their ability to come together as a team.

They have been documenting their mum’s life through an Instagram blog called @dayinthelifeoflaws, which is filled with a range of posts about their mum’s life living with such a rare form of dementia.

Lauren, who approached Alzheimer’s Research UK to share their story, said:

“My mum Laura was diagnosed with posterior cortical atrophy when she was 57. I wanted to share our family’s story because so many people I’ve spoken to were shocked to find out dementia could affect someone so young, and had no idea of what PCA actually is.

“Some days you have to have a laugh, others are sadder, but we felt it important to show people what dementia can really be like through our family’s experience.

“We all help look after mum, we’re like a little tag team. We all have our careers, and my older sister has a baby, but our hours are all quite different so we tag in and share caring for her between us. We work well together, and we all live at home apart from Harriet who lives nearby, so Mum is very happy with the set up.

“Mum used to be an art teacher and also worked at a local nursery with kids for most of her life. She helped bring up her eight siblings from the age of seven, and then brought up my sisters and me, so we are doing our very best for her now she’s the one who needs caring for.

“It started six years ago with little things, like poor driving, forgetfulness, generally being scatty. We soon realised it was quite serious and ran through all the things it could possibly be. Our research led us to Alzheimer’s.

“We went to the GP four or five times but he refused an initial test. I went back one last time with Mum and said ‘I’m not leaving until you take it seriously’, and I provided them with a huge list of all of the symptoms and things Mum had been doing. She was tested and diagnosed after that.

“Mum has definitely passed the mid-stage now. She needs help with everyday activities. Her vision and spatial awareness is much more challenging now, and my sisters and I wash her, prepare her food and put her to bed.

“I feel very lucky that there are enough of us that we can tag in. We figure it out day by day and my aunt often helps as well. We just hope our Instagram account raises awareness of what is happening to families around the world. One of the posts shows my mum taking part in dementia research – I hope more people sign up to take part in research too so we see an end to this terrible condition.”

Alzheimer’s disease is most often the cause of the brain cell damage in PCA. PCA is sometimes called a visual form of Alzheimer’s. However, the early signs of PCA and typical Alzheimer’s can be very different. Alzheimer’s disease usually affects memory first. In PCA the first signs are often problems with vision and perception but as time goes on the disease progresses and affects the whole of the brain.

Lauren said one of the hardest things for Laura has been losing her ability as an artist. Scattered around the family’s home are wonderful sketches, paintings, and clay models that Laura has created as a working artist – now drawings show only scribbles as PCA continues to rob her of her former life.

Lauren said:

“She was a fine artist, and did a lot of artwork at home. I think that’s what she’s found the hardest, that she’s not able to do that anymore and it was something she loved so much. Sometimes we still get watercolour and pencils out for her and encourage her to do some art again, but she’s very reluctant. We have to say to her ‘just because it doesn’t look like what you want it to look like doesn’t mean it’s not still good and not still enjoyable’, but she finds it hard to see her talent fading. It’s stark when you see the difference between her work from before and her work now. They often look like squiggles on a page.”

Another post on Instagram shows a scan of Laura’s brain which was used for research, and the brain can be seen to have visibly shrunk due to the disease. In the caption, Harriet writes: “Some day someone else’s family may hear the words ‘we can help’. So this is for them.”

One image shows Laura with her mum, Sarah, Tilly and Harriet having fun at the seaside on a recent trip to Ireland.

Many videos show both happy times and distressing times in Laura’s life. One shows a light-hearted moment as Laura laughs off her struggles with using a phone, a simple skill PCA has taken from her, while another documents Laura walking around her home confused, as her attention span becomes increasingly limited.

Other videos show perfectly ordinary days in the life of a beautiful family, such as loving moments between a doting grandmother and grandchild.

Tim Parry, Director at Alzheimer’s Research UK, said:

“We can’t thank the Hewitt family enough for sharing their story to raise awareness of posterior cortical atrophy and the need for more research into the rarer forms of dementia.

“The Hewitts are a perfect example of a family living well, despite the many challenges of dementia, and Alzheimer’s Research UK aims to battle the stigmas associated with the condition.

“Our vision is a world free from the fear, harm and heartbreak of dementia, and one day we’ll get there, through every story shared, through every research grant funded, and through every volunteer, like Laura, giving up their time to make a difference.”

Both healthy volunteers and those with dementia are needed to take part in vital research across the country. To sign up to get involved, go to www.joindementiaresearch.nihr.ac.uk