Voice of experience: Gwenda Darling – living with dementia

Gwenda Darling shares with us her story and views on what well-designed aged care accommodation design looks and feels like. Gwenda describes to us how good design leads to meaningful change.


My name's Gwenda Darling, and I'm a proud pansexual, Palawa woman, and I live with frontotemporal dementia, behaviour variant frontotemporal dementia. I was given a diagnosis with five years with medication, three without, and here I am, 11 years further on, and I'm still living my best life. The first thing I'd look for if I was looking for an aged care home is for the outdoor space. I need to be able to get in and out smoothly with a walker or in a wheelchair, no steps, and also have an area where there is no grass, where there's just bare earth where I can put my feet and my hands in the earth. I connect with Mother Earth through my feet, and also as a woman living with dementia because you get the pins and needles in the soles of your feet because the nerve endings are changing, walking in the cool earth, it just settles, it’s very calming and playing in the earth as a gardener. You know, getting the dirt on your fingernails is something I've always done.

If I was designing a residential aged care facility, I would design it in a square. The veggie garden can be in the centre, there can be a grassed area in the centre, even a barbecue, wouldn't it be nice to be able to gather round a barbecue and have that social connection if you want, and also your visitors can go there so they're not confined to your room. And then you've got your little private area off your room, only has to be a couple of meters square, but just a little private area where you can go and sit in the sun.

The most important thing, I think from an architectural point of view is colours. Please don't do them garish colours, dull colours, have areas definitively designed. Don’t have lighting so bright that we've got light pollution, lighting and sound pollution are two of the things that do people living with dementia head’s in quicker than anything. But yet you need adequate light to read so, in the common areas, let's have lots of lamps. I also don't think the kitchen where the main servery is should be shoved in a corner because the noise pollution, the clanging of plates, they often have the dishwasher there, they go to the dining room and they just take the plates and cutlery across and the food service staff make all that noise and it's horrendous, noise pollution is really another thing.

If there's a pattern in the carpet, if there's flecks in the flooring, you bend to pick the flecks up, little patterns, you feel like you're falling into a hole, you've got to sidestep the patterns. The visual, spatial, it's really important that it's clearly defined. Make sure that you have nothing that looks like you're walking with a hole or a stairway, looks like it's coming through a wall, it's too confusing.

Another thing is labels, I find if you're visiting someone or if you’re people living in essential care. There has to be some label that connects to where you are, and really, it's about placement by staff in appropriate areas. I think for me to recognise my room, it would be really important to not only have the colour on the door, but also to have something like a memory keepers’ box. It's a box that's about an inch deep, and it's got a few treasures, it may have my mother's brooch, it may have something else. But you can look and you can recognise it and then link it to your room.

The best designed doors I've seen are the barn doors, the Mr Ed barn doors. Because you can lock the bottom door part, lie in your bed, you can see people going past, but you feel safe. Staff know how to get in, I can always get out with a safety latch, but I really think that colour and the split doors are so important to getting in and out. I need to feel secure in my own bed but not feel trapped. There's nothing worse than feeling trapped. If I want to have breakfast in bed, that a bedside table can come across it, and it's at the right height, and that's really important. I also want the curtains opened, I want to see out onto trees, I want to see out into nature. Then with mobility, I need to have free access to my room when I want to go. I don't want to have to go and sit at a dining room table and be left there for an hour until staff have finished the feeds or assisting others to take me back to my room. In my good day, I'll have more than one chair in my room. I'll have a chair I can sit in that I've got a footstool or whatever to put my feet up that I can look outside, but I want chairs for my visitors.

From a design point of view, I think it's important that people are able to take their pets into residential aged care communities, there is a safe area off their room where we can allow our pets to roam. You also can go in and out yourself without having to go through the dining room. And what else is important inside is lots of shelves for photos, but the photos go at eye height when you're lying on the bed, or when you're sitting, the photos are at eye height. There needs to be a bench along one wall that you can sit at if you want, but if not, families can leave things like your cake tin, your other treasures. Bringing treasures from home is so important to keeping me present. I do think that the dementia clock should be built into the wall, that says the date, the time, the temperature, the month, and they should be a standard fixture like a television.

The flooring, the tiles, oh my god, how do you get out of there? The anxiety that comes with an all-white bathroom and toilet lids, toilet seats have got to be a different colour so you can find the toilet. Ideally, the vanities would be a different colour as well, so, you know, that's a vanity from the wall. Light switches are really important that you have the large, accessible light switches, the actual whole of the power point needs to be a different colour to the surround and the switch a different colour. Not only do you need a hand-held shower, but to have a fixed shower attached, staff can use handheld showers, but we've used fixed showers all our life.

A lot of residential aged care facilities have windows with tinted windows, and that's all very well of the daytime. But if the curtains haven't been shut, it's scary, because you look in the window and you see the reflection and it's really awful because you think somebody else is in the room with you. And I also think curtains are much better than holland blinds, or up and down blinds because you're looking at a blanket wall. I've got one in my kitchen and I walk and look and think, Oh, what's that? And whereas I know there should be a window there, I think curtains are much more appropriate. I'm tactile, my fingers go an awful lot. They like soft things and that's another thing in soft furnishings, the velvet touch, the soft furnishings touch.

In the outside space, we need to have a sensory garden. We need the smell of lavender, the smell of rosemary, the smell of gum leaves just to be able to grab a gum leaf and rub it between your fingers. Even liquid ambers or something like that fell in winter that we can stomp in the leaves. What fun, we did it since childhood, stomping is so good and so healthy to get that angst out. The baby boomers are coming and the baby boomers want choice and control. So, if it's not right, we'll tell you.

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