Tuesday 13 November 2018

Rooms for improvement: New facility to help dementia patients and assist them with independent living

New facility at St Columcille's Hospital lets patients try out new products to assist with independent living

Kallie and husband Tony in the dementia garden at the centre. Pic: Tony Gavin
Kallie and husband Tony in the dementia garden at the centre. Pic: Tony Gavin
Deirdre Reynolds

Deirdre Reynolds

Pottering about at home in Arklow, grandmother Kallie McGuigan is constantly singing. From country and western to the old standards, music has always been at the heart of the family home as the 74-year-old and her husband, Tony, raised their three children before welcoming seven grandchildren to the brood.

"I love music," beams Kallie, who worked in catering most of her life. "I really love it. I'm crazy about it. I used to go dancing all around. I still go - although I'm much slower now."

A chair lift in the Memory Resource and Technology rooms in St Columcille's Hospital, Loughlinstown
A chair lift in the Memory Resource and Technology rooms in St Columcille's Hospital, Loughlinstown

Since being diagnosed with dementia three years ago, enjoying her favourite pastime has become more challenging: plugging and unplugging the CD player as she goes from room to room, regularly changing discs and figuring out how to work tiny control buttons.

Today, she uses a wireless speaker and USB stick loaded with all her favourite songs to ensure the couple's Wicklow home remains alive with the sound of music, even as her memory fades.

It's one of the simple changes husband and carer Tony has made around the house to help his wife of 52 years continue feeling like herself for as long as possible.

"I've about 700 songs on it," says Tony, a retired cabinet maker. "Country and western and different ones. It's brilliant. Kallie goes upstairs, sits on the landing, puts it on and sings away. She sings to most of the songs. It keeps the mind going all the time.

"If you don't remember to turn it off, you run the battery down, so I put a little red dot [beside the off button], but it never goes off. It's on every day, and the amount of people that come in and say: 'Can you get me one of those?'"

The small-but-smart solution is just one of those now on display at a new HSE Memory Technology Resource Room based at St Columcille's Hospital in Loughlinstown, Co Dublin, after Tony donated one of the speakers to the suite.

One of 23 such rooms set to be rolled out nationwide by the end of the year, the free service enables people with memory difficulties, such as dementia, and their families to try out a range of products, from clocks to cookers, designed to make independent living easier. Inspired by a Memory Technology Library set up at South Tipperary General Hospital in 2014, crucially it also gives the facility's senior occupational therapist more time to discuss discharge planning with patients who also have memory issues, something she admits hasn't always been the case in the rush to free up beds.

"When you're working as an occupational therapist on the wards, your time is very limited," says Joyce Jones, who has been working at the hospital for 14 years. "I felt people weren't being given enough time to talk about the dementia aspect of it - both the person themselves, depending what level dementia they have, and also the families.

"When I was talking about some of the technology we have here, and some of the strategies, it was a very clinical setting. They were in the day hospital, I was wearing a uniform, I was showing people equipment from a catalogue, and it just didn't have a lasting impact. They weren't able to pick up the piece of equipment and look at it."

An old-fashioned analog clock, easy-to-use remote control and talking cooker are just some of the assistive devices on display at the homely prefab, founded with the help of charity Friends of St Columcille's, and furnished by Ikea.

While most of the equipment must be bought separately from suppliers, with service users encouraged to shop around for the best deals, many other, more low-tech ideas - such as a homemade wall planner and sticky note reminders - hardly cost a cent.

"Cognitive scores are one thing, but what really matters is how they are managing from when they get up in the morning to when they go to bed at night," adds Joyce.

"My first question, after everyone is at their ease, is: 'Give me one thing that really frustrates you since you've been told you have dementia.' Most people will say: 'I forget what day it is or I forget when I'm going to the hairdresser.' Usually, someone's visual memory is better than their oral or aural memory; if I say something to someone, 10 minutes later, they will forget it, but if I show them something, they will frequently remember.

"It's very reassuring for people when they see they do have strengths as well, and we can use the strengths to maybe compensate for some of the weaknesses, so it's not all negative."

Little changes can make a big difference, agrees Tony, who also discovered how snapping the third hand, registering seconds, off the wall clock at home helped Kallie process the information more easily, and get less frustrated with her condition.

"It's been fabulous," he says. "To come in here compared to going to an office to meet a doctor or that - it's clinical. When you're sitting down here on the sofa, it's like home from home. There's lots of places you leave, and you're as wise going in as coming out, but here you leave and you have little ideas. Other people give you ideas as well.

"If only two or three of the ideas work out of a dozen, that's a winner. Every little bit makes a difference, no matter how small."

As well as offering support and suggestions to those living with memory problems, it's hoped that the resource rooms will help normalise conditions like dementia within wider society.

"There is often still a stigma associated with dementia," argues Anna de Siún, Senior Project Manager at the HSE's National Dementia Office, "and it's that stigma that stops people seeking a diagnosis.

"We know from a recent survey that around a quarter of people still said they delay getting a diagnosis, even though they know there's something wrong. And so I think the Memory Technology Resource Rooms play a really important part of that post-diagnostic support, that once you get a diagnosis, it's not that there's nothing else that can be done. There's lots of supports that can be put in place.

"It's really important that safety doesn't take over everything," she adds. "There may be some risk, but if somebody gets a great feeling of satisfaction, and feeling that they're still them [from hobbies like cooking or gardening], to be able to put technologies in place that'll keep them doing that for longer is going to help them live well with their condition."

Already, Joyce says she's seen first-hand the impact the practical resource, which can be accessed by appointment without a GP referral, has had. "We have an Alzheimer Café in Bray, and a lot of the people that come here I see at the Alzheimer Café, and they will say, 'Joyce, I have the noticeboard up'. "So I definitely see more take up of our advice.

"If somewhere is dementia-friendly, in that if there are clocks that are maybe easier to read or whatever, it's actually friendly for everyone," she adds. "It's person-friendly, really. It doesn't have to be a big glaring sign: 'I have dementia'. It can fit into the normal environment."

For a full list of Memory Technology Resource Rooms nationwide, see understandtogether.ie.

Irish Independent

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