FOI 2026/1706

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

1. Does your ICB have a current Dementia strategy that makes specific reference to people who are diagnosed under the age 65?
2. If so, is this strategy jointly owned with your partner Local Authority/ies?

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.

1. Yes, the current NHS Greater Manchester (NHS GM) Dementia & Brain Health Delivery Plan, 2023-5, does make specific reference to young onset and rarer forms of dementia, as a specific project delivery area under the strategic aim of System Quality Improvement.  The Greater Manchester ICB dementia quality standards also make specific reference to Young Onset Dementia.

2. Yes, the GM Dementia Strategy is being refreshed for 2026-30; it is owned by the GM Dementia Strategic Group, a multi-agency governance group which includes Local Authority representation. A lot of Scoping work has taken place over the last year with partners including lived experience groups.

We will seek to build on this moving forward and this will include understanding what we need to commission and deliver to meet the standards in the new National Framework.

The Strategic Aims and shared ambitions of the ICB Dementia Programme have been developed, and co-designed, with people affected by dementia and are outlined in this document; Greater Manchester Dementia and Brain Health Delivery Plan 2023-25. This plan is being updated by the Greater Manchester Dementia & Brain Health Strategy 2026 – 30 which is currently in draft form. Young Onset is referenced on page 5 as outlined in the response below.