We wanted to find out about people’s experiences of living with young onset dementia in Buckinghamshire.

The aim of our research project was to learn about the dementia support people had received and how helpful it was for them.

What we did

  • We developed an online survey that was live from 25 October 2022 until 2 January 2023.
  • This was publicised through our monthly email newsletter and on our social media channels.
  • We also contacted 27 GP surgeries who have patients with young onset dementia, as well as 42 voluntary and community groups.
  • The project was also promoted by Buckinghamshire Council’s Dementia Strategy Group.
  • We collected feedback from people living with young onset dementia, as well as their relatives, carers and friends.

Key findings

  • Most people we spoke to said that when they received their diagnosis, it was difficult or very difficult to get information about the support that might be available for them.

Of the people who said they’d been given information, less than half said they’d received anything about young onset dementia or their specific type of dementia. Less than half said they’d been told about making a will or power of attorney.

Nor did most people receive information about key issues such as:

  • Employment rights
  • Benefits
  • Pension advice
  • Peer or family support groups
  • How to keep fit and mentally stimulated
  • Where to find age-appropriate activities.

Just over half of the people who were given information said that it was age-appropriate ‘to some extent’. Only one told us the information was personal to the individual living with young onset dementia, and only one said the information and support was received quickly enough.

Many people found it difficult to access the support they wanted later on.

  • Half the people who shared their views with us said they would like someone to contact them regularly and see how they were getting on.
  • Few of the people we spoke to attended any peer support groups.
  • Most didn’t know any other individuals or families who were living with young onset dementia.
  • A few family members told us they thought that the person living with young onset dementia could benefit from socialising with their peers.

Our recommendations

We recommend that Buckinghamshire Council works with dementia services to provide targeted, local support for people living with young onset dementia.

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.

We recommend that Buckinghamshire, Oxfordshire and Berkshire West Integrated Care Board (BOB ICB):

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

Downloads

Young Onset Dementia: Experiences of Support – full report

BOB ICB and Buckinghamshire Council’s joint response

Follow up response from Bob ICB and Buckinghamshire Council

 

Published on 17 Jan, 2023 (updated 15 May, 2024)

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3 comments on "Young onset dementia: experiences of support in Buckinghamshire"

  • Commenter said on 26th January 2023

    Raising Awareness is so important. Thank you for taking this on board and championing and highlighting the Needs and Rights of those with Young Onset Dementia and their Carers

    • Commenter said on 26th January 2023

      What support is there?

  • Commenter said on 1st August 2023

    (Following a recent early onset FTD diagnosis) We have spoken to Carers Bucks, Dementia UK’s admiral nurses and Alzheimer’s UK and they have all been amazing, above and beyond, but when it comes to your local GP and NHS services…well that has been quite a different matter.
    I was finally able to speak to the GP and supplied a long list of referrals and clinic requests all of which he sounded very unsure of and he would have to speak to his colleagues.
    As of yet we haven’t found anything for young onset dementia, I was hoping to discover a little group of individuals who could compare and contrasts and support each other. My husbands self confidence has been greatly affected, and I was hoping that networking with others and realising that you are still a valuable member of society who can still do the things they love, that would help his confidence and encourage him. I’m worried he could become quite isolated.

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