Touchpoints of Connection
“But it’s not about stuff!” they said, “it’s about the people, the human connection and being there.” They were absolutely right. Contact with your loves is the most fundamentally important thing to experience which contributes towards your wellbeing when you live with end stage dementia. Once the visit is over though, what then? Is there any context around you to give you clues that you belong? Is there anything familiar that you can relate to around you? How long is it since the last person entered this space you now lie in? How long will you wait to get a clue you that you are safe, wanted, needed? Is this place permanent or temporary? How echoey this place sounds.
Imagine, Rachel’s son has left now after a lovely visit which made her feel warm and loved. Shortly after, a carer Julie pops in with a drink, “hello Rachel, I’ve brought you some apple juice.” Rachel isn’t keen on apple juice, much preferring orange, but she drinks it anyway with Julie’s help, she needs a drink and is never sure when the next one will be available.
Taylor Swift is playing on the radio. Julie sings along and giggles to herself about shaking it off. She looks around at the bare walls, sighing thinking about how many people she needs to help with their drink in the next hour and how bored she is. The radio starts to blether about the weather. At least it fills the silence. Julie can’t wait until her shift finishes. Julie complains about the grey mist outside and Rachel starts to drift struggling with her drink. She doesn’t finish it, so Julie dutifully notes on her app that Rachel only managed about 100mls, gets up, to leave the room, “catch you later Rachel.” Rachel looks around shutting her eyes to block out the dreary, featureless magnolia walls.
OK, now imagine, Rachel’s son has left after a lovely visit which made her feel warm and loved. Shortly after, a carer Julie pops in with a drink, “hello Rachel, I’ve brought you some tea, just the way you like it, weak as dishwater and no milk or sugar, and a coffee for me. Mind if I join you? I need a break. Ooh, I just love your ducks Rachel, they always make me smile,” she grins widely at Rachel spying the familiar happy quacky wooden ducks on Racel’s shelf. Rachel smiles back thinking, yes, they make her smile too reminding her of a time back in the 90s when she collected them. A bit like those photos on the wall. They all look happy and familiar, a wall of loves. It feels like home.
Julie chatters away, looking through Rachel’s CD collection, talking about the Eurythmics and how her mum used to love that song, what was it “There Must be an Angel” and Julie starts singing as she pops the CD into play. Julie helps Rachel with her drink, as Rachel settles comfortably among the familiar. She’s not sure if she is home, but if it isn’t, it certainly feels like it.
Rachel casts her eyes around trying to make sense of this place and sees bright cushions, a gorgeous, crocheted riot of circles using up old pieces of wool which reminds her of one she crocheted as a young mum. She can feel her fingers moving, remembering how it felt crocheting into the wee small hours to create a fitted bedspread for her child. It was a necessary money saver but also calming amid the chaos of a busy, challenging family life. It feels like home.
Julie says how much her son in the photo looks like Rachel and how handsome he is. Rachel smiles, enjoying her refreshing cuppa and reaches her hand out to Julie. Julie holds her hand saying she’s glad Rachel is enjoying her tea and and takes a slurp of coffee. Rachel, holding Julie’s hand rubs her thumb against Julie’s fingers. Julie wonders aloud, “is that a thank you, or are you mumming me Rachel?” No matter, Julie leans over and kisses Rachel on her cheek telling her how much she is loved before wafting out the room still singing, “dah dah dee dah dah dah dah dah, dah daahh, dah-daaaahh – yea-ah!” before she goes and enters Rachel’s drink on her app. It feels like home – for both of them.
When a person moves into residential accommodation, these touchpoints of connection can provide vital clues to their experience and can help us retain connections to the past and forge connections with those who care for us. In a 2023 study by Haim-Litevsky, Komemi and Lipskaya-Velikovsky, 2023, the authors concluded that “the phenomenon of belonging and connectedness is universal and appears to be a basic human need in the context of well-being and participation, regardless of the type of community one belongs to … well-being, meaningful participation, sense of belonging, and connectedness, revealing both reciprocity between each pair of constructs and a mediation effect of sense of belonging and connectedness in the association between meaningful participation and well-being among a healthy population.”
It’s a bit like “Through the Keyhole” for Rachel, ‘what kind of person lives here?’ We naturally extend ourselves into the space around us, express ourselves through the things we decorate our home with. Things of comfort, joy and memories. Touchpoints of connection to our core and our past.
It’s well established that if we feel isolated it affects our wellbeing. If we don’t feel comfortable in our surroundings, like we don’t belong, then we begin to feel isolated which affects our wellbeing.
“Promoting a continuation of self and normality i.e. person-centred care include knowing the person, welcoming the family, providing meaningful activities, being in a personalised environment and experiencing flexibility and continuity promote a sense of self” (Edvardsson, Fetherstonhaugh and Nay, 2010).
When I worked in a children’s home in the 90s, my colleagues Lynne, Helga and a few others totally got this idea, and we worked tirelessly to convince other colleagues to turn the institution into a home. It seemed like human sense to us, but still I regularly see places stripped of personalisation and wonder what it must be like in a echoey room with no familiar, homely stuff of life surrounding me. Milte et al., 2016 found that a person living with dementia and their family members all felt it was important that personhood was supported through meaningful interactions, allowing space for reciprocity to feel useful and valued, as well as a supportive physical environment and in my book, that’s means giving supportive context to anyone, but especially a person whose cognition may be compromised. After all, how could I ever settle thinking I wasn’t at home? A place needs to feel like home.
Of course, there may be occasions when those items become triggers for agitation, and we must absolutely be led by the person to support them to feel as comfortable as possible in their space. However, over time as dementia progresses, things can change and those triggers can bring comfort again, softening a room, creating curious conversations between caregivers and a person living with dementia, taking the echo out of the room and adding the stuff of life to create touchpoints of connection.
Nicolle Mitchell
20 August 2024
Edvardsson, D., Fetherstonhaugh, D. and Nay, R. (2010). Promoting a Continuation of Self and normality: person-centred Care as Described by People with dementia, Their Family Members and Aged Care Staff. Journal of Clinical Nursing, 19(17-18), pp.2611–2618. doi: https://doi.org/10.1111/j.1365-2702.2009.03143.x
Haim-Litevsky, D., Komemi, R. and Lipskaya-Velikovsky, L. (2023). Sense of Belonging, Meaningful Daily Life Participation, and Well-Being: Integrated Investigation. International Journal of Environmental Research and Public Health, 20(5), p.4121. doi: https://doi.org/10.3390/ijerph20054121
Milte, R., Shulver, W., Killington, M., Bradley, C., Ratcliffe, J. and Crotty, M. (2016). Quality in Residential Care from the Perspective of People Living with dementia: the Importance of Personhood. Archives of Gerontology and Geriatrics, 63(63), pp.9–17. doi: https://doi.org/10.1016/j.archger.2015.11.007
“But it’s not about stuff!” they said, “it’s about the people, the human connection and being there.”