Personal Record of Dementia Journey – Berkshire Blue Book

ContactHelen Single, Long Term Conditions Commissioning Manager – Disease Management Programmes, NHS Berkshire West
Telephone0118 982 2701
Address55-57 Bath Road, Reading, RG30 2BA

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 show that these packs are often not used and frequently discarded.

‘Information prescriptions’ have been piloted in several settings for long term conditions. The Alzheimer’s Society produce 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.

We propose to adapt 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, we intend to complement existing strengths.

We see the outcome of our project as 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 current 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.

The Dementia Challenge will bring together all parties involved in dementia care in West Berkshire – health, social care and the voluntary sector – in order to ensure universal adoption. 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.


  1. 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)
  2. 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.
  3. We propose to adopt the innovation and information source, developing the idea to incorporate local strengths – i.e, the carer’s education courses run in West Berkshire and to further the user-centred design process to produce a user-held care handbook that will serve as a companion through the dementia journey
  4. 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).
  5. 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.

Key deliverables

Phase 1 Months 1-4 Oct ’12 – Feb ‘13

  1. Review material from NHS Gloucestershire, Alzheimers Society and other sources. We have already made contact with Helen Bown from the project team to evaluate strengths and weakness of Living Well Handbook and mode of adoption; also with Andrew Proctor, head of Knowledge at the Alzheimer’s Society, about design of information leaflets.
  2. Begin local adaptation Using existing information as a starting point, elicit specific needs/ wants of people with dementia and their carers (experts by experience) with focus group and individual interviews. This will be done at the existing Carer’s Education courses and Alzheimer’s Café’s across Berkshire West and building on work being done by PCT on dementia website.
  3. Identify the information considered important by professionals (experts by training): GPs, geriatricians, speech and language therapists, memory clinic, local authority (LA) and voluntary sector staff by focus group and individual interviews.
  4. Review findings of interviews in context of current literature on information provision for people with dementia and existing information available in the UK.
  5. Gather baseline data to use for small-scale evaluation of impact of pack:
    1. on patient/carer reported quality of life, understanding of and preparation for the illness, rates of health system use
    2. unplanned admissions, crises requiring intervention.

Phase 2 Months 5 – 7 March – May ‘13

  1. Write and design a prototype ‘living’ pack based on input from previous stage (pack is likely to contain core information and additional information with which it can be populated individually along the dementia journey). Pack preparation to be carried out jointly by project team, using expertise of University of Reading Centre for Information Design Research.
  2. Prototype web-based counterpart to pack.

Phase 3 Months 8 – 10 June – Aug ‘13

  1. Trial packs in successive iterations, gathering input on the overall concept and the detail of pack components from participants in Phase 1.
  2. Develop and gather feedback on parallel web site.

Phase 4 Months 11-15 Sep ’13 –Jan 14

  1. Finalise packs and web site for launch
  2. Roll out across Berkshire West
  3. Work with agencies across Berkshire West, primary and secondary care to ensure pack is integrated into processes and pathways and develop ‘USER EMPOWERMENT’ process.
  4. Evaluate impact of pack on patient/carer reported quality of life and understanding of and preparation for the illness.

Anticipated outcomes

Outcomes/ performance indicators How measured
  1. All newly diagnosed people with dementia and carers given handbook and enrolled on carers education courses
Memory clinic registers and carers education course registers
  1. Increased patient/carer understanding of the illness
Questionnaires – Feedback from patient/ carer
  1. More positive/confident attitude of carers towards dealing with dementia symptoms + improved quality of life
Quality measures – DEMQOL/ DEMQOL – PROXY
  1. Increased levels of preparation for the later stages of the disease (e.g. decisions regarding residence or arrangements for Power of Attorney)
Before and After Data

Data to be pulled from GP dementia registers/ memory clinic lists


5.     Reduced emergency hospitalization + Delayed or no institutionalization 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