SCIE opinion - 4 May 2011

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Photograph of Caroline Ogden

“Dementia creeps up on you. When you are a carer there’s no training, pension, sick pay or holidays”

Caroline Ogden, carer

My husband Peter has Alzheimer's and vascular dementia. Peter was diagnosed in 2006 but he started developing symptoms some years before. At home it became a real struggle for us both; I was on call 24 hours a day and increasingly unable to provide all he needed.

The biggest problem for relatives is that dementia creeps up on you. As a carer there's no training, pension, sick pay or holidays. So anything that helps you see the person instead of the problem is a great help, like SCIE's Dementia Gateway. SCIE and the Alzheimer's Society worked together to produce the Dementia Gateway. It's mainly for staff but as a carer I've found it really useful. I'd recommend it to other relatives who are new to the world of dementia.    

There are also SCIE's e-Learning modules on dementia. Although 'e-learning' can sound like homework the modules are divided into manageable chunks and it's all basic stuff. For example, there's a section called Fact or Fiction that explores myths about dementia for staff, carers and anyone who is affected by the condition.

If I was a care home manager I'd get staff into little groups and go through each of the activity sections with them. But I'm not a care home manager, Peter is my husband. Therefore the key role for those of us that love him is to monitor the care he receives now he is in a home, and SCIE's resources help us to understand what this care should look like.

I've also used my personal experience to pass on suggestions to SCIE to make their resources even more helpful. For instance, could there be a 'working with families' section' in the Gateway? This would encourage two-way sharing of information and help explain to loved ones what is happening.

I also think NHS staff should use these resources if they care for someone with dementia. Peter had two stays in hospital and I was shocked at how little knowledge of dementia some of the staff had. Some staff won't have had specialist training and these online resources are really good for getting to know more about how they can work with people with dementia.

I sometimes say that caring for Peter has been like being in a train, going into a tunnel, with nothing but blackness to look forward to. SCIE's support provides a bit of light.

This article originally appeared in Care Talk magazine.