Dementia Rainbow

Recently, I met a gay man living with dementia. He asked me what my research was about; I used too many words and eventually said, ‘LGBTQ+ people living with dementia’. He smiled, leaned in and whispered, ‘Shhh…don’t dementia it.’ We both held hands and laughed until we had tears in the corners of our eyes. In this moment, he collapsed a dementia dilemma. People living with dementia want connection – conversation, play, laughter, touch – but most people are too afraid of dementia to mention it, let alone connect with someone living with dementia to have a laugh.

There are lots of people living full and rich lives with dementia who will be able to tell you exactly what they need to support them. But as dementia progresses ways of connecting change. This can sometimes be challenging and confronting for others who might feel like someone they know and love is disappearing.

Our research shows that it’s important to focus on discovery rather than disappearance. In our Rainbow Connections project we co-designed some resources to support visiting people living with dementia as it progresses:  Interacting with people living with dementia and a Visitor Guide Book.

Here are 11 simple ideas to support connection with someone living with dementia:

1. Greet with love:

I learnt this from watching a care worker in a dementia unit. She’d never worked there before, but every time she approached a person living with dementia it was as though she was seeing a long lost relative. Her face lit up with a smile, she extended her arms, she got onto their level with open body language, ‘It’s so lovely to see you,’ she exuded. She meant it. And the person receiving this greeting relaxed, they nearly always smiled back, once or twice they teared up with joy. They did not know who the care worker was, but they often didn’t recognise people. What they did recognise in that greeting, though, was themselves. Someone who was lovely to see.

2. Bring objects rich in meaning:

Conversations often rely on abstractions and memory which can make them difficult for people living with dementia to enter into. Having objects which have rich meanings for the person living with dementia is a really useful way of connecting. Obviously, this is going to be different for everyone. Smart phones are an incredibly useful tool for bringing up relevant images quickly. But other sensory objects, like special items of clothing, kitchen utensils, tools or souvenirs can be useful starting points for conversations.

3. Find nature:

People living with dementia and their care partners often talk about how important it is to get into the sun and into nature. Nature makes no demand us to speak or remember. It also allows us an immediate mutli-sensory source of wonder. Finding nature can be as simple as sitting in the sun, looking out a window or going for a walk together. It can also be patting an animal, feeding birds or just looking at or being in the garden.  

4. Ask ‘beautiful questions’:

One of the most important things to remember is never to say ‘remember…’ to someone living with dementia. North American dementia academic, Anne Bastings, suggests  we ask beautiful questions. These are questions where there’s no right answer and instead ask for emotional and sensory responses. These can emerge in the moment. I’ve listed some examples below:

You’re noticing the weather or surroundings together: “It’s warm outside today. Do you like days like this?”

While sharing a cup of tea or snack: “This tea smells like flowers. Do you have a favourite kind of tea or something you enjoy drinking?”

 A song is playing in the background or during an activity: “This song has a sad  feel to it. Do you like music like this?”

While walking or sitting in a garden you’re noticing flowers, plants, or birds: “These flowers are bright. Do you have a favourite flower or plant?”

You’re sitting together, perhaps waiting or resting: “I like to sit quietly sometimes. What makes you feel peaceful?”

5. Listen openly

People living with dementia often want to tell their stories. Sometimes they will tell the same story repeatedly. Sometimes the stories might change over time or be different from other people’s versions of events. Stay patient and open. Don’t focus on the facts – there’s no need for checking or correcting. Focus on  connecting through the story. It can help to have a curious and open mind about the story. I’ve found that people often tell stories that give them a sense of safety or about times where safety has been threatened.

6. Speak simply:

Using clear simple sentences and not changing topics too quickly can help people living with dementia connect with you. Many people living with dementia are also hard of hearing, so this clarity – as well as facing someone and reducing background sounds – can help with comprehension. If you’re into sibilance, Dementia Support Australia (DSA) talks about the 5 S’s of getting your message across: slow, simple, specific, show and smile. DSAConnecting with someone special_A5 Booklet.pdf

7. Listen to music:

I went to a jazz venue with a man living with dementia the other night, as the music started his friend leant over to me and said, ‘Music’s a balm, isn’t it?’ His friend had been distressed, but as soon as the jazz started he was transfixed, smiling, clapping whole heartedly after each solo. Like nature, music doesn’t make demands of us and has a positive impact on mood. Playing music that is enjoyed by a particular person living with dementia is important. For example, in collaboration of older LGBTQ+ people, I’ve put together a playlist of songs for LGBTQ+ people living with dementia.

8. Lean in to humour:

Humour and dementia is really worth a whole post on its own. When I talk about doing research with people living with dementia, most people make a joke, wondering if they have dementia. This kind of humour will usually disconnect with people living with dementia, rather than serve to connect with them. Humour can be easily recognisable, like the joke made by the person living with dementia at the start of this post. Playfulness and silliness also bridge communication and memory.

9. Playing games:

We all know the cliché that people in residential aged care play a lot of bingo, but there is a reason for that. A game offers an immediate occupation and point of connection. Bingo isn’t always the answer (arguably, is rarely the answer), but other games that resonate with an individual can be. Certain card games like snap. Doing puzzles together. Seated Keepy Uppie (for the Bluey uninitiated, a game where you keep a balloon off the ground).

10. Try out touch:

While touch is very personal and intimate, many older people are craving touch that is not related to personal care. Touch can be a particularly important way of connecting with someone towards the end of life or when someone no longer uses speech to communicate. Sometimes this can be as simple as holding someone’s hand or it could be giving a foot or hand massage with some nice moisturiser. In our work, we often take bags of tactile objects: leaves, flowers, silk scarves, sand paper, sensory toys. In one residential aged care facility where I’d been researching for some months, I’d been watching a woman who no longer used speech to communicate and mostly sat with her eyes closed. I’d talked to her daughter and we decided to make her a sensory object based on her interests. She was religious so we included a soft cross. We placed the object on her lap and she held onto the Cross, eyes still closed but fingers moving around its shape repeatedly.

11. Keep turning up:

This is probably the biggest one. To connect, you need to keep turning up. Older people living with dementia experience intense social isolation. It can be uncomfortable and confronting seeing someone you know and love changing. It can be particularly hard when people forget who you are and don’t remember that you visit. But everyone needs connection. As one of the carer participants in one of our studies said, ‘There are times when relationships in life aren’t reciprocal and are difficult. We still need to keep going.’ Another sent me an email in the last days of her partner’s life: ‘I’m knitting. Treasuring her presence.’