Client and Carers Narratives: The lived experience of Alzheimer’s disease

Sara Simons
University of Northampton
Patient and Public Involvement

Summary

To involve service users and carers in the creation of an open educational resource using client and carers narratives of their lived experience and the impact of Alzheimer’s disease upon their daily lives. The resource will empower and inform a shared culture by putting the client and carer at the heart of the delivery of the resource (Francis, 2013) whilst informing the local Dementia Action Alliance.

What are the Aims?

The resource will be used across interprofessional health and social care programmes and local communities to develop a better understanding of the psychological, emotional, cultural, social, economic and physical impact upon the everyday lives of service users and carers.

Who was/is involved?

This project involved collaboration between Northampton University and the Alzheimer’s Society who provided the contact with a service user and carer.

What has changed/will change?

The video will be made available as an open educational resource to give access to the widest possible audience. The Alzheimer Society will use the video to inform the local Dementia Action Alliance in helping the local community become more dementia friendly. The university will use the resource to inform students of the impact of Alzheimer’s disease on people’s everyday lives.

What lessons have we learnt?

The resource has still to be piloted and evaluations of the resource will be gained from normal student evaluations of learning, some qualitative feedback from the University of Northampton School of Health Service user and Carers group and from the Alzheimer’s Society.

Contact details

Sara Simons sara.simons@northampton.ac.uk

Alison Ewing Alison.ewing@northampton.ac.uk

Links to further information and resources

Alzheimer’s Society

Northampton Dementia Action Alliance