How it all started
David Light and Jim Delves are former carers who have experienced the distress and sadness of caring for someone with dementia. In 2008 they met at a carer’s group and discussed the difficulty in finding ‘local’ information and services to help them in their caring roles.
They discussed the possibility of working together to gather the facts on a single A4 sheet of paper to hand out at the next carers meeting. It became obvious that so much information was needed, it was decided the way forward was to put the information into the form of a booklet that could be used by people living with dementia, their carers and their families.
Development of the booklet
From a recognition of these facts David and Jim set about developing the Dementia Carers’ Pathways as an information source that not only signposted points of contact to services, but also incorporated a degree of education that could be assimilated by the carer, at a pace, to suit them and over a period of time.
The original intention of developing a version local to the area of Teignbridge was quickly outgrown as news of, and demand for, the booklet increased for other areas of Devon. They found themselves mapping all the services that were available throughout Devon.
Working as volunteers, the Dementia Carers’ Pathways booklet took David and Jim 5 months to write, from March 2008, their first meeting, until August 2008.
The document is designed to bring local and useful information to anyone who is associated with dementia. It has been organised into sections, around the important details, carers need to know along a caring pathway.
- Dementia carers’ pathways Devon
- Find out more about the booklet on the Rotarians Easing Problems of Dementia website
Devon Partnership NHS Trust placed an initial order for 100 copies, increased to 200 copies and then 1000 copies, quickly followed by another order for 3000 copies. To date 18000 copies have been printed.
Local versions are available for Devon, Torbay and Somerset. The concept has also been used to develop a version for Wiltshire.
Bradford and Bristol Teaching Hospitals are using the Dementia Carers’ Pathways document to develop an information approach within their teaching programmes.
Who uses it?
Recognized as an extremely valuable information resource, the Dementia Carers’ Pathways booklet has been carefully aligned to fit with the National Dementia Strategy. It facilitates the delivery of information directly to the point of caring where it is needed. It has been developed by carers and has proven to be a very cost effective addition to mental health services.
The Dementia Carers’ Pathways booklet is used by;
- People with dementia, their carers and their families
- Mental Health Teams as a reference, both in hospitals and home visits
- General Practitioners (GP)
- Community Psychiatric Nurses (CPN)
- Occupational Therapists (OT)
- Carers Groups
- Memory Cafes
- Care Coordinators
- Carer support workers
How it is distributed
- By Mental Health Teams
- Doctors Surgeries
- Community Nurses
- Memory Clinics
- Memory Cafes
- Carers groups
Feedback has been excellent from professionals and carers alike;
- “I always have a copy with me when I visit clients” CPN.
- “I hope it achieves the recognition it deserves” Minister.
- “Thank you so much, it has helped me care for my mother” Carer.
- “An invaluable source of information” Director NHS.
- “I wish this booklet had been around when I was caring for my…” Former carers
- “Very useful and easy to understand” Carer
- “Thank You” Over and over again Carers
Updating of information
Up date is controlled by the authors. All reported changes are recorded on master copies held by Carers’ Pathways. It is by this means that consistency and copyright is maintained.
Prior to any reprint effort is made to update information and points of contact.
Continuation of Development
Development of the Dementia Carers’ Pathways is continuous. Your opinions and comments would be welcome to help us in keeping this information up to date.
The authors are grateful to the following organisations for their support;
- Devon County Council
- Devon Partnership NHS Trust
- NHS Devon
- NHS Somerset
- REPoD (Rotarians Easing Problems of Dementia)
- Senior Council for Devon
- Somerset County Council
- Somerset Partnership NHS Foundation Trust