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Clinical Activity Data > Young Onset Dementia

Freedom of Information request Young Onset Dementia

Response published: 19 May 2026
Clinical Activity Data | Health | MH Services

FOI Request

Dear Sir/Madam, I am writing to request information under the Freedom of Information Act 2000 regarding individuals with young onset dementia (defined as individuals of any age who first experienced symptoms of dementia under the age of 65 and then received a formal diagnosis) within your local authority area. Please provide the following information, using the most recent available data (preferably as of 14 April 2026 where possible). Where data specific to young onset dementia as defined above is not held, please provide the closest available proxy (for example, individuals under 65 with a dementia diagnosis and note the proxy that has been used). Questions • The number of individuals who were diagnosed with dementia under the age of 65 currently under the care of your services. • The number of individuals under the age of 65 diagnosed with dementia within the most recent 12 months of validated data. • The number of individuals who were under the age of 65 when diagnosed with dementia who were detained under the Mental Health Act in the last 12 months (if recorded). • The number of individuals who were diagnosed with dementia under the age of 65 currently receiving Section 117 aftercare (if recorded). • The number of individuals who were diagnosed with dementia under the age of 65 currently: o Receiving community-based support o Admitted to inpatient mental health settings • The number of individuals under the age of 65 with dementia who have experienced a delayed discharge from inpatient settings in the last 12 months (if recorded). • Does your organisation routinely record young onset dementia as a distinct category within its data systems? (Yes/No) If the requested information is not held in the exact format above, please provide the closest available data. If any part of this request exceeds cost limits, please provide advice and assistance to refine the request. Please let me know if you have any questions. Kind regards,

FOI Response

Freedom of Information Request – Ref: FOI 119-2026

Thank you for your recent Freedom of Information request. Please find our response below.

You asked:

The number of individuals who were diagnosed with dementia under the age of 65 currently under the care of your services

The number of individuals under the age of 65 diagnosed with dementia within the most recent 12 months of validated data.

The number of individuals who were under the age of 65 when diagnosed with dementia who were detained under the Mental Health Act in the last 12 months (if recorded).

The number of individuals who were diagnosed with dementia under the age of 65 currently receiving Section 117 aftercare (if recorded).

The number of individuals who were diagnosed with dementia under the age of 65 currently:

o         Receiving community-based support

o         Admitted to inpatient mental health settings

The number of individuals under the age of 65 with dementia who have experienced a delayed discharge from inpatient settings in the last 12 months (if recorded).

Does your organisation routinely record young onset dementia as a distinct category within its data systems? (Yes/No)

Our response:

Clarification question sent on 17 April 2026, no response received within a month – FOI closed.

Next steps:

Should you have any queries in relation to our response, please do not hesitate to contact us. If you are unhappy with the response you have received in relation to your request and wish to ask us to review our response, you should write to:

Louise Moss
Head of Legal Services / Associate Director of Corporate Governance
c/o Gloucestershire Health and Care NHS Foundation Trust
Edward Jenner Court
1010 Pioneer Avenue
Gloucester Business Park
Brockworth, GL3 4AW
E-mail: louise.moss@ghc.nhs.uk

If you are not content with the outcome of any review, you may apply directly to the Information Commissioner’s Office (ICO) for further advice/guidance. Generally, the ICO will not consider your case unless you have exhausted your enquiries with the Trust which should include considering the use of the Trust’s formal complaints procedure. The ICO can be contacted at: The Information Commissioner’s Office, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF.