1: Introduction

The Carers-ID project is designed to provide useful information for carers of people with profound and multiple intellectual disabilities but will also be useful for carers of people with other disabilities. We have developed these online resources with the help of families and charities across the UK and Ireland and hope you will find something here that works for you.

The project was initially created to help support carers following the COVID-19 pandemic but it soon became clear to us that the need would extend beyond this period. The resource consists of a number of modules on topics carers felt were important to them. We have a number of video clips and podcast recordings from carers who talk openly and honestly about their daily lives.

We have developed 13 modules based on our conversations with carers and our charity partners from across the UK and Ireland. We hope that you will find the included material of use. Below is a brief summary of each module to give you a snapshot idea of what they include and where to find any information you might be looking for.

The ‘COVID-experiences’ module is intended to bring together what carers have told us about how they got through the pandemic. Their stories are told from their unique perspectives and while they may not reflect your experience we hope you will find some commonalities.

From time to time we can all feel a little down or can go through a period of depression. The module called ‘Reducing low mood’ is intended to help you identify the difference and know when a period of low mood has changed into depression. It offers a number of helpful tips to improve low mood and links to further reading and resources which you might find useful.

The ‘Reducing anxiety’ module contains information on how to identify what anxiety is and what it is not. There is no one size fits all presentation of anxiety and carers have told us of many ways in which they experienced anxiety. This module shares some of those experiences and describes the signs to look for in the event you are experiencing anxiety. The module presents some tips which you might find useful to reduce anxiety and a range of support organisations you can contact for more help.

Our module on ‘Managing stress’ provides the reader with many of the common signs and symptoms which indicate you may be feeling stressed. Again, we provide a number of strategies that can be used to manage stress including finding support through relationships, going for a walk and eating better. Quotations from carers we have spoken with show how stress can build and how speaking to someone about their situation helped.

The module on ‘Promoting resilience’ discusses why resilience is important and describes steps we might take to improve our resilience. Some of these include building our social connections, being proactive and maintaining a hopeful outlook. Quotations from carers who have overcome difficult times illustrate ways in which they improved their own resilience.

Being a 24/7 carer can place a strain on any family. The module on ‘Family relationships’ discusses  how families relied on each other before, during and after the pandemic and acknowledges the constant need for carers to juggle their roles. It provides some suggestions on how we can better communicate with our families in addition to resources that can be used if further support is required.

There is a lot of jargon associated with interactions with healthcare services or terms which are used by professionals. Our module on ‘Terminology’ is intended as a resource which can be used to look-up unfamiliar terms. If there are any terms you have come across which are missing, please send us a message and we will be more than happy to add these.

The module on ‘Accessing local support’ is intended to provide carers with brief information on their legal rights in addition to sources of possible financial aid including government and charitable organisations. While it is beyond the scope of the Carers-ID project to fix the notable problem of a lack of respite services this module suggests a number of respite options which might be available to you.

Our module on ‘Peer support’ works through mentorship where we connect carers who have volunteered to be mentors with others who would like someone to talk to. The module describes what the mentor and mentees should expect to gain from the relationship in addition to explaining what the benefits of mentorship are. If you would like to take part as a mentee or mentor, you can contact the Carers-ID team via the contact page on this website.

The module on ‘Future care planning’ is intended to provide carers with some key points when thinking about future decision making. The module includes information on how to start a conversation about this important issue and provides some practical resources that carers may find useful.

It can often be the case that siblings become the primary caregiver for a brother or sister with a learning disability. Even if they are not the primary carer, siblings may still contribute to the provision of care while living at home. This module titled ‘Siblings who are carers’ discusses the potential challenges a sibling may face when caring for their family member and provides some potential strategies and services that can support them.

We created our module on ‘Nutrition’ due to its importance for us all in maintaining our health and overall wellbeing. This module also  talks about possible issues which might arise with feeding a family member through a PEG tube.

Another important area carers told us about was ‘Sleep.’ This module talks about the importance of getting a good night’s rest to overall health and discusses some of the factors that can make sleep difficult. It provides strategies that can assist with improving sleep and provides a range of additional reading materials that may prove of interest.

We hope you will find the materials provided here of some help. If you feel there is something that needs further development or something we have missed we would love to hear from you. You can contact us via the Carers-ID contact page on this website.




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