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If you are supporting someone with dementia, you are important. You are helping that person to continue living in the community with dignity and love. However, to keep doing this, you need to look after yourself and sometimes that means taking a break. Making the decision to use respite care is a hard one, but it is one that is shared by many carers like you. While there are many resources available to give you information about the care system, this resource is designed to help you in your decision-making about respite by providing you with information from the carer’s perspective. In here you will find stories about carers and their experiences of respite care, as well as advice and tips to help you make the most of your respite experience.
At the back we have included contact details for organisations and services that can help you with information about accessing respite care when you are ready to make the decision to use it.
The idea for this guide began after reviewing the results of a national survey of over 300 carers of people with dementia. In that survey, they were asked about their experiences and opinions of respite care. The responses to this survey provided information of great potential use to other carers – and so this guide was begun. The original survey report can be found online at the following URL: www.dementiaresearch.org.au/respite
Much of the information in this guide has been provided by the survey participants, but we have also received generous input from Alzheimer’s Australia’s Consumer Dementia Research Network (CDRN), which is a group of people living with dementia and carers of people with dementia who provide guidance and advice to research projects investigating issues related to dementia. The CDRN contributed largely to the “tips and advice” section.
We hope that you enjoy reading this guide and that it gives you food for thought.
A guide for carers, written by carers
Resource developed by Dementia Collaborative Research Centre for Carers and Consumers