Marion, 62, eventually loses her eyesight due to dementia. In 2019, shortly before the pandemic, she was diagnosed with a rare form of dementia called posterior cortical atrophy (PCA). Dementia is a general term for various conditions that attack the brain and worsen over time.
“It scares me. Marion of Newcastle thinks every day when he talks on the phone,” I don’t know what will happen. “
Marion’s 34-year-old daughter, Kirsty, is also answering the phone. If Marion has a hard time accessing the correct word or remembering the details, she says gently.
“She has to help me because I’ve forgotten things,” Marion says with a laugh.
According to the NHS, there are more than 850,000 people with dementia in the UK. One in 14 people over the age of 65 lives with dementia, and one in six people over the age of 80 has dementia. As we live longer, the number of people affected is increasing. By 2025, the number is estimated to exceed one million.
However, little is known about certain types of dementia in Marion. PCA is sometimes referred to as “visual mutation” or “visual spatial” Alzheimer’s disease. According to Alzheimer’s Research UK, it is unknown how many people around the world are suffering from it.
Initially, Marion’s dementia caused problems with her memory and eyesight. As PCA affects the depth of human perception, it is increasingly affecting the ability to read, write and cross roads. She recently participated in a research project that revealed that she couldn’t read a series of numbers in a row.
Marion has adapted to her symptoms, but now also affects her ability to avoid her home.
Despite all this, Marion’s independence remains of paramount importance to her, and with Kirsty’s help, she can remodel her home to make it easier to navigate, and decisively stay alive. I made it possible.
“Color is really important,” Marion explains. “I painted yellow around the doors, so I know there are doors when the white walls are over and turn yellow. This means I won’t hit them.”
As the Social Care Institute for Excellence (SCIE) points out, increasing color and contrast helps define objects. For example, a dark sofa on a bright carpet is more noticeable. The contrasting colors help people with dementia and blindness find stairs and room entrances.
As a result, the carpets above and below Marion’s stairs have also been recolored and darkened. This means she knows when she will reach the flat surface again.
“The goal is to prevent falls and make the mother as self-reliant as possible,” Kirsty explains. The next change in the list is a bright blue railing that runs along the stairs, in contrast to the white walls and the yellow door frame, making everything easier to see.
Other adaptations have also been made to Marion’s house. Lighting levels have been improved to minimize shadows with higher wattage bulbs.
She also has Alexa programmed to instruct her to take medication every night at 9 pm after a day careler who helps with other daily tasks such as preparing meals and doing household chores and grocery shopping returns home. increase.
Marion appreciates the support she has as it allows her to maintain her independence. But Kirsty feels it should have been easier to access.
Kirsty is a lawyer specializing in medical competence law. She says information about how to live with dementia is not readily available.
“Thanks to my work, I was able to study PCA. I already had some knowledge because of the large number of clients with dementia, but I still fought for support services that could help with these changes. I had to, “she says. Is called.
“The information is on the internet and the service is there, but I had to go looking for it. It didn’t make it easily available to us.
“We had to fight for the support we got. It’s great when you have it, but I’m better supported by people especially with rare dementia I think it is necessary. “
“We have easy access to dementia and vision professionals,” Kirsty adds.
“But it doesn’t look like it’s combined, so I had to put everything together to figure out how to make it work.”
Marion and Kirsty live the ups and downs of life with a changing brain. It can be scary, but we hope that sharing Marion’s story will not only help people with dementia, but also raise awareness about support services so that people with dementia can be independent for as long as possible. is.
“I really like doing myself as much as I can,” says Marion. “I know I can’t always do that, and I know my limits, but for now, thanks to the people around me, especially Kirsty, what I can do is I’m very lucky.
“I rely heavily on her. She tells me if I’m doing the right thing.”
Dementia and us This is a two-part BBC series that starts with BBC Two at 9 pm on October 5th.