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Learning from YoungDementia UK’s conference

Published October 2014

YoungDementia UK’s first conference, organised with the Journal of Dementia Care, brought together over 220 delegates including providers of services for people with young onset dementia, researchers and commissioners, as well as people living with young onset dementia, to share best practice and initiate ideas for achieving change.

Speakers included Rikki Lorenti, the country’s first Young Onset Dementia Admiral Nurse in Berkshire, who stressed the importance of supporting people through the transition of moving into care. Christian Bakker, Healthcare Psychologist from the Florence Centre in the Netherlands, described his research into to the needs of people with young onset dementia; stressing the importance of supporting the whole family to reduce care-giver burden.

A session on ‘Alternatives to Homes’ was introduced by Jane Norman, Director of YoungDementia UK Homes:

  • Chris Roberts, who lives with young onset dementia, spoke candidly about his decision to find the care home which he will move into when he can no longer live at home. He highlighted the inadequate use of technology and access to Wi-Fi in many of the homes he looked at. “The care home you choose now can use you as an advisor to improve standards”, Chris said.
  • Angela Raguz, General Manager of Residential Care, Hammond Care, Australia, shared their experience of running Streeton Cottage, an innovative residential care service for people with young onset dementia. Key learning included the need to maintain residents’ existing relationships outside the home, as well as involve the community with activities inside the home to keep people meaningfully engaged. Angela stressed that residential care should to be provided at the right time, not because it’s the only option and that it should complement other services to help people to stay in their own homes longer.
  • Dr Sarah Green and Rob Green of Merevale House, Warwickshire, illustrated how their approach for proving a residential home without barriers works in practice. Staff and residents share bathrooms, kitchens and laundry facilities and there are no timetables or set visiting times. As well as removing physical and practical barriers, Merevale encourages residents and staff to share their emotions. Residents get involved with cleaning and laundry and many of them work or are setting up enterprises – such as a beauty salon in the home – providing a sense of purpose to daily life.

A lively Q & A session, chaired by Colm Cunningham, Associate Professor, University of Salford Institute for Dementia Studies emphasised the need for more consideration to the given to the design and environment in care homes (including the music which is played), making them feel less institutionalised and more relevant to younger residents.

The event closed with a call from people with young onset dementia, facilitated by DEEP, for a greater awareness of young onset dementia among GPs and more support at the point of diagnosis. They also sought a more strategic and consistent approach to service provision, with existing providers pooling their resources, rather than a continuing ‘postcode lottery’ in terms of standards of information and services.

“The conference was a hugely informative and inspiring day” said Jane Norman, Director of YoungDementia UK Homes “We are looking forward to working with our partners to create an exceptional supported living facility for people with young onset dementia, which builds on these pockets of innovation and learning, as well as involving people with young onset dementia in the creation of our services.”

To read all of the presentations please visit the conference page on the YoungDementia UK website.