Personal Record of Dementia Journey – Berkshire Blue Book


Ensuring better knowledge about dementia is the first of three key steps to improve quality of life for people with dementia and their carers in the National Dementia Strategy (Department of Health, 2009).

High quality information is important in helping people to live well with dementia for as long as possible in the community (Department of Health, 2009). Good information and active participation in care can enhance advance care planning especially since many people lose insight into their condition as the dementia progresses.

Many health professionals, including some GPs, might be reluctant to ‘break bad news’ about dementia. This might be related to the impression that there are no effective treatments and no or limited support services available. However, early diagnosis and ‘information prescriptions’ can help improve quality of life significantly.

Currently, after a new diagnosis of dementia, patients and carers in West Berkshire are handed a pack of notes assembled from different sources which provide details of the condition. The information in these packs varies in its usefulness to different individuals. Limited data from interviews with patients and carers showed that these packs were often not used and frequently discarded.

‘Information prescriptions’ have been piloted in several settings for long term conditions. The Alzheimer’s Society produces a wide variety of high quality information leaflets. In 2010 NHS Gloucestershire  produced a ‘Living Well Handbook’ to address information needs of people with dementia and have piloted its use.

The Project

This project adapts the Gloucestershire model to West Berkshire to enhance user participation and ownership. From the outset – opinions will be sought from ‘experts by experience’ (patients and carers) and ‘experts by training’ (professionals) to develop a handbook. The West Berkshire memory services have run carers’ training courses, which provide hands-on information and advice on dementia and are very well attended. By linking sections of the training course to sections within a ‘living’ handbook, it is intended to complement existing strengths.

The outcome of the project will be a user-designed and owned, ‘active’ pack that will serve as a companion to the dementia journey. The pack will be a record and communication tool, shared between people with dementia, carers and multidisciplinary professionals. We will also draw on a West Berkshire project to develop on-line information for people with dementia, utilizing the information currently available from Alzheimer’s Society (and other sources) thereby producing a parallel on-line version to the physical post-diagnosis pack.

Over time, with promotion and education we aim to use this handbook as a first step towards a culture of user empowerment and user-led care planning.


  • The Living Well Handbook has been designed to record information in an accessible way for a person with dementia and their carers – personal details, prescriptions; besides being a companion for the person, it can be accessed by the different services and professionals who provide care and support from health and social care. (NHS Gloucestershire, 2010)
  • Alzheimer’s Society produce high quality information on all aspects of dementia from their ‘Knowledge and Information’ department – available on the internet and in print – it is proposed to adopt and adapt information, developing the idea to incorporate local strengths – i.e. the carer’s education courses run in West Berkshire and have a user-centred design process to produce a user-held care handbook that will serve as a companion through the dementia journey
  • We will consider the information needs of people with dementia and  the circle of people caring for them, from spouses, to children, to  professional carers; hence developing a paper book with parallel on-line and, possibly, mobile resources (trans-generational design).
  • To make the process of user-centred design in this study  transparent so that its effectiveness and impact are demonstrated and the methods can be replicated in other scenarios within the NHS. The methods and outcomes are likely to be relevant to the design of information for      other long-term conditions.

 Anticipated outcomes

  • All newly diagnosed people with dementia and carers given handbook and enrolled on carers education courses. Measured by: Memory clinic registers and carers education course registers
  • Increased patient/carer understanding of the illness. Measured by: Questionnaires – Feedback from patient/ carer
  • More positive/confident attitude of carers towards dealing with dementia symptoms + improved quality of life. Measured by: Quality measures – DEMQOL/ DEMQOL – PROXY
  • Increased levels of preparation for the later stages of the disease (e.g. decisions regarding residence or arrangements for Power of Attorney). Measured by: Before and After DataData to be pulled from GP dementia registers/ memory clinic lists
  • Reduced emergency hospitalization + Delayed or no institutionalization. Measured by: Audit of readmission rates to acute hospitals. Audit of GP dementia registers. Audit of strategies employed prior to requesting admission to hospital or residential care placement. Economic analyses



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