There is a word that comes up time and time again when talking with families of people with dementia. That word is loneliness. The conversation always seems to come round to the pain and loneliness of carers and their loved ones, as they find themselves being increasingly isolated from their social circles.
Often, friends call round when a diagnosis is first made, but as the illness progresses, the visits become fewer and fewer until they tend to dry up completely. This is something that can happen with any progressive or chronic illness, not just dementia.
The effect on us
As a friend on the outside, yes, it can be difficult to watch. Yes, it can feel awkward. Yes, it can be easier to walk away. You may not know what to say. You may be experiencing a sense of loss yourself. You may feel it isn’t worth it because the person may not remember you anyway, or may be dozing and hardly wake up when you’re there. However, despite this, there are still ways and reasons to maintain these friendships. We can still be hugely important in people’s lives, even if they don’t recognise us in the way they used to.
The effect on the person
The thing is, even if the person doesn’t remember you, they do remember the feelings your presence creates. We may still be able to make the person feel safe and connected. When we meet a baby, we usually try to have meaningful and positive interaction with that infant. This creates good feelings and a sense of wellbeing for that child, despite the fact that they won’t necessarily retain a conscious memory of us. It’s the very same spending time with an adult who may not remember the details of our presence either. Despite not remembering the details, our presence can leave them with a positive feeling and increased well-being.
The effect on the family
It’s not just the person with dementia who needs our friendship. Families need support too. Dementia can produce a prolonged, slow grief as the person the family used to know gradually becomes less and less like their old selves. Culturally, we gather around and support families at times of grief, and this is no different. However, as the grief is prolonged, the support similarly needs to be ongoing. They need us to be there, not in a morbid sense, but to be beside them to share and support their journey.
What can be helpful?
Keeping the friendship alive can be difficult in this situation, so how can we make it easier? It’s not always easy to talk to somebody who may not recognise you.
So how can we make a visit and our time with somebody count?
– Firstly, it can be a brief visit. Popping in for 10 minutes is absolutely fine. You don’t have to stay for hours on end. Shorter visits may actually be preferable for some people who may tire easily, or their family who have a lot on their plate in caring for them. Feel okay about leaving when you have to, or when you sense your hosts have had enough. Little and often may be preferable to long drawn out visits. The energy changes after a visit for everybody in that setting. That energy and good feeling will linger on well after your visit.
– Try visiting with others. If two people visit at the same time, it can take a lot of the pressure off everyone. You’re no longer trying to sustain an intense, and possibly awkward “one to one” conversation. It’s a much more natural social situation, allowing the person with memory issues to take a back seat if they need to, while you chat as a group. This way, they can still experience the warmth of the interaction, even if they find it difficult to keep up with the conversation verbally.
Friendship, communication and socialising isn't necessarily about merely exchanging information between people
– Think about bringing props. These give you something to talk about and may even prompt memories. Perhaps you shared a passion for motorbikes in your youth, travelled to far-off places, or you both loved real ale. Bring along some photographs, a magazine, memorabilia, a piece of music or perhaps items related to that shared passion. You can then go through these together and it will give you both something to focus on.
– Feel free to bring something useful; a dinner that can be thrown in the freezer, some nice bits and ends from the deli, or call ahead and check if they’re okay for everything. You could offer to help out with any tasks that might need doing. The carer may now be carrying all the jobs that were previously carried by two. So if there are any lightbulbs that need changing, shopping done, or sitting with their loved one for half an hour whilst they get out, put the offer out there. It can help to be specific when making an offer, such as “why don’t I come over on Tuesday for an hour whilst you get out”, rather than “let me know if there’s anything you need”, as people are much more likely to respond to the former. Sometimes, it’s much easier for somebody to simply be able to say ‘yes’ to help, rather than to spell out what they need.
– It’s okay to have quiet company. Your simple pressure-free presence may be enough. When a family member was ill, I used to bring work or a book into her hospital room and quietly work away in the background. She loved what she called the “Granny’s Kitchen” atmosphere that it created. She was free to doze in and out. There was no pressure to chat, entertain or be jolly; but she drew great comfort from just knowing that there was somebody around, and a different energy in the room.
What’s important
Friendship, communication and socialising isn’t necessarily about merely exchanging information between people, it’s so much more. It’s about creating a shared moment that makes people feel heard and valued. So if the words fail, if conversations go round in circles or aren’t retained, just remember – your presence is much more valuable than any words you could utter.
Gillian Martin is a behaviour specialist at the Callan Institute in the Saint John of God Community Services in Shankill, Dublin