Ground breaking App launched for dementia carers
Dementia professionals in the Trust have launched a ground-breaking new App in dementia care.
The CLEAR Dementia Care© App will help transform how people understand dementia.
It provides advice to help carers find effective ways to interact and respond to the person with dementia to enable them to meet their needs. It also provides carers with a tool to record behaviours and identify patterns to address the associated need.
The App has been designed for carers of people living with dementia at home and in care homes, but will also be of interest to anyone who is likely to meet a person with dementia.
Dr. Frances Duffy, Consultant Lead Clinical Psychologist for Older People in the Northern Health and Social Care Trust led the development of the new resource. She explained: “Dementia is a life changing condition for the person and also for those who love and care for them. Carers can sometimes struggle to understand changes in the person with dementia. At times they don’t know what to say or do and, sometimes, without realising it, they can say or do things that can increase distress. Making small changes to how we interact with the person with dementia can really help them to feel safe and valued. CLEAR Dementia Care© has been developed to help us see the whole person with dementia. When we understand the perspective of the person, we can find ways to reduce potential distress. The outcome is enhanced quality of life for the person with dementia and an empowered and confident carer.”
The App, which is available for free now on Apple and Android devices, is the first comprehensive App of its kind dealing with the professional care of a person with dementia.
It takes carers through five areas that are important to consider to understand the whole person; cognition, life story and personality, emotional and physical wellbeing, activity and environment and relationships. Using illustrations it brings to life how the perspective of the person with dementia can sometimes be different from the perspective of their carer and how this can lead to potential distress and conflict. There are examples of helpful and unhelpful ways to respond and interact.
The CLEAR App has been commissioned by the Health and Social Care Board NI as part of a wider Dementia eHealth and Data Analytics Pathfinder Programme. The app is also freely available on the HSC Apps4Dementia library (https://apps4dementia.orcha.co.uk) as part of its ongoing activities to increase the uptake of technology in supporting people living with dementia.
Dr Duffy continued: “We’re extremely excited about the App and delighted to launch it today. It has the potential to drastically alter lives, for both the person with dementia and also carers. When a person living with dementia doesn’t fully understand what is happening or can’t tell others what they want or need, they can become distressed and this can cause increased stress for carers. As dementia progresses, carers can find it difficult to cope with changes in the person’s ability. This can leave carers feeling helpless and exhausted. The app offers information and advice that carers can easily access any time that they need it. I’m really excited to hear people’s feedback and how it has made a difference.”
As well as explaining about the different types of dementia and specific behaviours, the App enables you to chart behaviours that the person engages in. This may include anxiety, asking to go home, sleep problems and declining support with personal care. The chart helps to identify patterns and can help carers to find out why the person behaves in a particular way at certain times. This then enables them to provide support when it is needed.
Sara Jane Nicoletti, Care Assistant at Masserene Manor who has looked after dementia patients for over 5 years explained: “I always say you lose a person with dementia twice as you lose them to the dementia first. What dementia patients are doing may not make sense or may seem strange but to them and inside their mind this is perfectly normal. The App helps us to understand this and gives us the view from inside the mind of a person with dementia. I have no doubt from my experience of working with patients with dementia that their loved ones and my colleagues will find this App incredibly useful.”
Dementia is on the increase with an estimated 22,000 people living with the condition in Northern Ireland. There are several Apps on the market to assist people with mindful activities but this is believed to be the first to offer professional psychological support.
Anna Gaughan, Chief Executive of The Life Story Network CIC & Tide, commented on how the App would benefit carers: “Responding appropriately, proportionately and compassionately to individuals living with dementia, who are exhibiting behaviours that are distressing, is a difficult challenge for both family carers and paid carers. This CLEAR App provides excellent, accessible and practical advice about firstly understanding the emotional driver behind these distressing behaviours and a wide range of pragmatic non‐pharmacological interventions. At the heart of this approach is the importance of knowing the individual person and their life story. CLEAR is a valuable tool for family carers and paid carers“.
Soo Hun, DHCNI Innovation & Digital Eco-system lead said: “Prior to COVID there has been a growing interest in digital solutions such as mobile apps to support not just those people living with dementia but also their carers, families and friends. However, the use of digital tools has become even more significant as part of Health & Social Care NI’s COVID response; with the Digital Health & Care NI team being at the forefront and rolling out “Digital First” solutions as far as possible. Working collaboratively with Dr Duffy, the CLEAR App is part of a wider digital transformation programme in health and social care to make available clinically assured digital solutions that have been checked for data privacy and security into our clinical pathways.”
The content of the App has been developed by Dr Duffy, Jill Richardson, Associate Psychologist and Marc Harvey, Service Improvement Lead for Dementia in the Northern Health and Social Care Trust Dementia Home Support Team. The Northern Trust team worked with Sentireal who developed the App and Flickerpix who produced the illustrations.
Seamus McErlean, HSCB Social Care Commissioning Lead said; “A person living with a dementia can, because of their impaired cognition and their response to the world around them, exhibit behaviour which others find difficult to understand. This can be highly stressful for carers which in turn can lead to a sense of powerlessness and reduce their ability to continue in the caring role.
“This new CLEAR Dementia Care © App provides a support tool for informal carers and staff that will enable them to better understand patterns of behaviour and therefore be better able to respond appropriately to them.
“The team at NHSCT along with their partners in Dementia NI are to be congratulated for this important contribution to dementia care.”
18th May 2021