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Nursing Times Awards 2010

Mental Health Award

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WINNER: Young Onset Dementia Service for Westminster and Kensington and Chelsea, Sean Mooney, Caroline Walker and James Warner, Central and North West London FT


There are approximately 18,000 people with young onset dementia (YOD) in the UK. The National Dementia Strategy emphasises the importance of developing specialist teams to provide good quality information, early diagnosis and interventions for people with dementia and their carers.

The experience of dementia in people aged under 65 years is often different to those of older people, both in terms of the type of dementias involved and the subsequent effects on the service user, carer and family. This means their needs also differ.

This initiative aimed to provide a coordinated service for referral, assessment and ongoing support of younger people with dementia in Kensington and Chelsea and Westminster, and their carers. It was set up after a report identified approximately 150 people with YOD in the area, and that their needs were going unmet. Support includes information/advice, pre and post diagnosis counselling, assessment and diagnosis, assessment of social and occupational needs, specialist day hospital support and therapy and carer support.

The process

This nurse-led multidisciplinary initiative first involved the development of a weekly therapeutic group programme at The Chamberlain Day Hospital. This requires significant ongoing input in terms of planning and facilitating the groups.

The team developed an operational policy and an information leaflet about the YOD service for users and carers, which we posted to GP surgeries and various teams and services in the area. We also met with local neurology services to establish close links and discuss referral pathways, and organised an official launch to help to publicise our service. We are a community service offering not only initial assessment, diagnosis and signposting to other agencies and teams, but also therapeutic interventions and ongoing social and carer support.

Two part time social workers (one for each borough) and a second dementia specialist nurse/deputy team manager have been recruited. We have developed our own initial assessment documentation and nursing and other staff routinely use the Addenbrooke’s Cognitive Examination assessment tool. In 2009 we participated in a working party developing a business plan proposing expanding the YOD service to cover the Brent area.

Advice to other organisations

Since YOD accounts for only approximately 3% of all dementia cases, services like this require a large and/or well-populated catchment area. They also need to be well publicised to relevant teams and services, and especially to GP surgeries, as most GPs will only see one or two cases of YOD in their career; this increases the risk of misdiagnosis, for example as depression.

Close links with local neurology services are important to ensure referral pathways are clarified. It is also important to develop links with relevant local services such as day hospitals and centres; occupational, art, music and family therapy; and Admiral Nursing, and to develop or link into support groups for service users and carers.

Access to experienced social work support is crucial to provide social care and support including day care, home care, befriending, assistive technology, and placement in warden-supported, residential and nursing home care as required. Providing appropriate care, including residential and nursing home care can be challenging for people with YOD, as placements are difficult to find and geographically spread out. This requires a team with specialist expertise and knowledge of what is available locally and further afield.

Benefits of the initiative

A YOD service helps to achieve the National Dementia Strategy goals of providing good quality information, early diagnosis and interventions for people with dementia and their carers. Without a specialist service, people with YOD and their carers can be passed from pillar to post between adult, old age and neurology services, with no one agency taking responsibility for coordinating their care. This adds to service user and carer stress at a difficult time in their lives — our service aims to prevent unnecessary stress adding to their burden.

Financial implications

Research has suggested that compared with older service users with dementia, people with YOD appear to use fewer community resources and more institutional care, which is more costly. By providing community support and delaying the onset of institutional care, the YOD team can therefore reduce costs.

Future plans

We have developed a business plan proposing that the YOD service be expanded to cover our neighbouring borough of Brent, and regularly agree to requests to meet professionals from other trusts who are interested in setting up a specialist service for YOD in their area.

A working party has been set up to facilitate service user and carer evaluation/feedback using patient reported outcome measures (PROMS) and patient reported experience measures (PREMS).


For more information on this initiative please contact Sean Mooney:

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