A place for everyone
“The model that we use and where this idea originated from was actually in the Netherlands,” says Dr Louise Hopper, of the Alzheimer Café in Leixlip. Not to be confused with coffee houses in the general sense, these cafés are places specifically designed for and catering to dementia patients and their families.
“It’s like a café in so far as people can come and go as they please. We have tea, coffee, cakes and a bit of chat. We have music playing when people come into the café and a burst of music again before people go home because it really lifts the mood,” says Louise who is a research psychologist based in Dublin City University and does a lot of research in the area of healthy ageing, specifically dementia.
She, along with Rena O’Hara, the assistant director of nursing at Ryevale Nursing Home where the cafés take place, and Susan O’Reilly, a dementia nurse specialist at Connolly Hospital, were responsible for setting up the Leixlip branch.
“Leixlip is based in north Kildare but all of the supports and services for Kildare are in the south. I was aware that north Kildare had really nothing in the community for people who were struggling with this diagnosis. I bumped into Rena at a conference about Alzheimer cafés and we in turn bumped into Susan, so it was sort of a shared interest of ours,” Louise says.
There are a couple of things that set Alzheimer cafés apart from other social gatherings which occur elsewhere. Mainly, they are open to anyone who would like to come along and there are no ‘limits’ as Louise puts it. “We have a really mixed audience most of the time. People that have a diagnosis of dementia, their partners, their spouses, their families, friends. It’s not just for carers. e main aim behind the café is to give families who are living with dementia a chance to get together, to have a social outlet. Something we find is that it’s not only the person with the diagnosis but their family, particularly if it’s a spouse, they feel really isolated. e individual themselves might not want to go out because they’re fearful of forgetting themselves but their partners don’t want to leave them and that’s where the café model really comes into its own, because that doesn’t matter.”
Those in attendance at any given time varies. Louise explains that families visit for lots of different reasons, either for the person living with dementia or for their own interests. “We have had a couple of situations where families have come and they haven’t brought the person who is suffering from dementia. Sometimes if people have never been before you’ll find a son or a daughter or a husband and wife who come along to check out the café and see what it’s all about. en they may or may not decide to bring the person with them, and to be honest I think that depends on where they are in their journey.”
Within this social environment there is also an educational aspect, which Louise says is extremely beneficial. “We’re trying to do a couple of things. e social part is very important but the other piece is to give people a route towards finding the information they may need.”
Every month a health or social care worker will visit the café to talk to the guests about issues they may have concerns about. “They’re addressing a mixed audience so they will moderate what they’re talking about. For about 15 or 20 minutes they’ll talk about understanding the condition, how to communicate better, about the experience and looking after their psychological wellbeing,” says Louise.
“It could be about support and if so the Alzheimer Society of Ireland might come out once a month. We have some good links with Connolly Hospital and Dr Siobhan Kennelly who’s a geriatrician there, she’s a fantastic speaker. People can ask questions then and there or they can have a more private conversation on the side when we go back to the general chat in the café. The speaker, myself, Rena and Susan are always there so we will go around and talk to people if there’s any issues that they need help with. Some of the carers will say it’s very helpful to talk to experts in the field or that it’s comforting to know that they‘re not on their own. Other people who are in similar situations to themselves can give them ideas that might help.”
Language and the nouns used within the parameters of the café are carefully considered. In order to try and eliminate some of the stigma associated with dementia Louise and her team refrain from referring to anyone as a sufferer.
“There’s a huge fear and anxiety around the diagnosis,” she says. “We’re not trying to deny that it is a degenerative condition, there are difficulties with it but there’s lots you can do to live as well as possible, for as long as possible. It’s not a death sentence, it’s not as if you’re going to run into difficulties tomorrow. People can live quite a number of years if they have the right supports in place.”
The changes in the people who regularly attend the café are obvious to the ones who are closest to them. Sometimes those who have been apprehensive about attending find that they end up making great friends, with kindred spirits.
“One gentleman was quite nervous when he first started coming but now he’s made friends with another man who also has dementia. They can kind of relate to each other, so they can have a conversation about how it makes them feel which is brilliant. Even if they have the same conversation every time they meet that doesn’t matter because it’s beneficial to them in the moment and that’s what we’re trying to do,” Louise says.
One of the most wonderful things about this outlet, particularly for the families of those living with dementia, is that there is no need to feel embarrassed or under pressure if those they bring along do not conform to social etiquette. “It’s safe and relaxed and we would have one or two people with dementia in the café who get a bit restless so they might stand up and wander around, they may join in the talk. We have one lady who sometimes answers back during the chat but that’s all fine.”
The Leixlip Alzheimer Café celebrated its first birthday in April this year and the annual socials are the perfect opportunity to pay the café a visit to see if it would be suitable for you or someone you know. “The December café is always a Christmas party and then we also do a summer social as well, usually in July or August. That’s another great one to pop into if you just want to suss it out.”