One year on – young onset dementia within Dementia UK

November 17, 2021

A year has passed since the merger of YoungDementia UK with Dementia UK in November 2020. Tessa Gutteridge, Programme Director for Young Onset Dementia, shares an update on the encouraging progress that has been made since the merger.  

Our shared commitment, then and now, is to improve and increase the direct support available to people living with young onset dementia, and influence to bring about positive changes for people affected by strengthening their voice. Both aspects are enhanced by the increased investment, expertise, reputation and reach of the combined charities. 

Ambitious goals for increasing young onset dementia support 

By spring 2021, we had agreed a Young Onset Dementia Programme outlining several ambitious goals which together offer a new cohesive range of support options and involvement opportunities.

Tessa Gutteridge

Tessa Gutteridge

These are a direct response to the very different impact of dementia in mid-life as expressed by people whose hope is to live as fully as possible. The goals and related activities fill a distressing gap, exacerbated by the impact of Covid during this past 18 months.  

We have embarked on fulfilling these goals with considerable care, energy and enthusiasm. We are now actively recruiting additional Admiral Nurses with a young onset dementia specialism including hosted Nurses in at least three geographical areas and a Helpline and virtual clinic session young onset dementia Consultant Admiral Nurse

Early 2022 will see the launch of new young onset dementia educational resources for all 309 Admiral Nurses to improve their knowledge and support skills. And our next charity year 2022-23 will see a further increase in Young Onset Dementia Admiral Nurse roles deployed in a range of service models.  

We will also be evaluating the Young Onset Dementia Advisor service in Oxfordshire (formerly a YoungDementia UK service) to explore the potential for an Admiral Nurse/Young Onset Dementia Advisory model to offer continuity of complex support/advice/peer support and signposting from diagnosis to beyond bereavement.  

Improving our digital offering for younger people 

Digital support, which has so much potential for the dispersed population of younger people and their families, has begun with the recent launch of a dedicated young onset dementia section of the Dementia UK website and the innovative Find support function for searching for young onset groups and services nationally. These digital offerings are set for further development as part of an exciting charity-wide digital strategy and will be populated with young onset dementia specific multi-media resources. Surveys on the use of digital by people affected, and on what resources are of value, attracted several hundred responses which we are now analysing to guide developments. 

Rebranding and reinvigorating the Young Dementia Network  

The Young Dementia Network, now hosted by Dementia UK, is our influencing channel to make positive changes that improve the lives of people with young onset dementia. By April we had recruited a Network co-ordinator and launched a dedicated rebranded Young Dementia Network site and resources. By June, we had agreed a demanding three-year plan that focuses on improving the diagnosis experience, the life-long support that follows and the understanding and awareness of young onset dementia in professionals and the public. These are huge tasks but vital.  

We have offered a well-received monthly webinar programme since October 2020 and keep in touch with our increased membership of over 4,100 people with young onset dementia, family members and professionals with lively information via a monthly enewsletter and our Facebook and Twitter social media channels.  

We are at an early stage of planning for our first campaign which is likely to focus on alleviating diagnosis delays and misdiagnosis; are seeking NICE endorsement for a resource to complement the NICE dementia guidance, are active on two other ‘better practice’ resources and are looking to hold a digital young onset dementia national event in October 2022.  

Building towards an exciting future 

Joining a growing, changing charity such as Dementia UK during a pandemic has presented us with challenges along the way. However, there is a genuine spirit of co-operation, a determination to do the best for beneficiaries and with that, acknowledge difference and tailor support accordingly.  

This has been a very busy, positive year which has helped us lay secure foundations for growing the direct support for people affected by young onset dementia, and for building our influencing capacity to ensure that external dementia strategies, health and social policies and practice properly include those with young onset dementia.  

Tessa Gutteridge 
Programme Director for Young Onset Dementia and Chair, Young Dementia Network  

Young onset dementia section

Visit our young onset dementia section of the website

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Find support tool

We have compiled a searchable listing of face to face and online groups and services across the UK, that are tailored to the needs of people with young onset dementia

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