Buckinghamshire, Oxfordshire and Berkshire West Integrated Care Board (BOB ICB) and Buckinghamshire Council have issued a joint response to our recommendations on support for young onset dementia.

In January 2023, our report explained that most people we spoke to found it difficult or very difficult to get information about the support that might be available for people living with young onset dementia.

It highlighted issues with the provision of information about key issues such as:

  • Making a will or arranging power of attorney
  • Employment rights
  • Benefits
  • Pension advice
  • Peer or family support groups
  • How to keep fit and mentally stimulated
  • Where to find age-appropriate activities.

Our recommendations to BOB ICB

We recommended that BOB ICB should:

  • Encourage GP surgeries to consistently code patients with young onset dementia on the EMIS system, so that those who may need more support can be identified easily
  • Ensure that, when someone is diagnosed with young onset dementia, Memory Clinics offer them and their support networks information about tailored support
  • Encourage general practices and primary care networks (PCNs) to work together so they can connect those with a young onset dementia diagnosis, and their support networks, across localities.

BOB ICB’s response

Key points from BOB ICB’s response to our recommendations include:

  • We recognise work is required to ensure people with dementia are coded appropriately on the EMIS system. There is ongoing support available so that staff in primary care can continue coding patients effectively.
  • The ICB will ensure neurology services are aware of the pre- and post-diagnostic commissioned support available. We will make sure staff are familiar with how to signpost accordingly.
  • We will continue to raise the profile of dementia with PCN teams. We will promote training and support for staff working within primary care so that all understand what support is available. GP dementia annual reviews offer an opportunity to signpost patients with young onset dementia to appropriate services.

Our recommendations to Buckinghamshire Council

We recommended that Buckinghamshire Council should work with dementia services to provide targeted, local support for people living with young onset dementia.

We said this could include:

  • Providing information in a timely, personal and age-appropriate way, and bearing in mind that such information might be different from that required by older people living with dementia
  • Ad-hoc, one-to-one support for issues faced by people with young onset dementia
  • A named contact responsible for regularly reaching out to individuals living with young onset dementia, to see where any further information or support might be needed
  • Connecting peers (either those with young onset dementia themselves, or their relatives, carers and friends) to create mini support networks.

Buckinghamshire Council’s response

Key points from Buckinghamshire Council’s response to our recommendations include:

  • The dementia support service will send out letters to all GP practices with information about signposting/referring to the dementia support service for patients with early onset dementia.
  • The dementia support service is planning regular post diagnostic information sessions specifically for patients with young onset dementia. These will be delivered at the memory clinics. 
  • A single resource of self-help advice and guidance for patients/carers is in development. This information will be shared across health, and social care partners and published on Buckinghamshire Council website. A section dedicated to early onset dementia will made available on this resource, which is due to go live in May 2023. 
  • The local authority and ICB recognise that the current available resource is not keeping pace with growth in the numbers of people being diagnosed with dementia, including those with young onset dementia. This will be reviewed as part of the future recommissioning of the dementia support service.
  • The local authority is committed to collaborating with its partners to consider how peer networks could be facilitated.

‘We accept the recommendations’

In a letter to Healthwatch Bucks, Craig McArdle, Corporate Director – Adults & Health at Buckinghamshire Council, said:

It has been acknowledged that there is a need for age specific groups for people with young onset dementia. The council thanks Healthwatch and the contributors to the report for raising this as a point for consideration. 

 Thank you for the recommendations laid out in the report. We accept the recommendations and have started to take these forward. 

We would like to thank BOB ICB and Buckinghamshire Council for their joint response to our report.


Joint response from BOB ICB and Buckinghamshire Council

Published on 28 Mar, 2023 (updated 3 Jun, 2024)

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