Learning disability and dementia - supporting transition to a care home

The longer life expectancy now enjoyed by most people with a learning disability is to be celebrated, for example people with Down's syndrome may now live to their 60s, a big step forward from the 1980s when life expectant was still in the teens. However, people with a learning disability generally are also at increased risk of dementia at a younger age and there are occasions when it is no longer preferred or practical for a person with a learning disability to remain in their home as dementia progresses. In such situations a move to a care home may take place, often at time of crisis or as dementia advances. Two longstanding problems have become evident: 1) people with a learning disability and dementia are often moved to a care home without being supported to share information about themselves or their wishes for future accommodation needs or preferences and 2) staff in care homes for older people can be hesitant about people with a learning disability and dementia moving in. This is due to uncertainty about how to meet their needs and the perception that the support needed is too great, or too different from other residents. This Catalyst proposal increases potential for appropriate engagement and activities before, during and after a move to a care home by older people with a learning disability and dementia.
There two issues will be addressed in this project in the following ways:

1. To develop, pilot and refine a new resource for people with a learning disability and dementia. Consistent with previous work of the Principal Investigator, this is expected to offer flexibility whilst ensuring the voice of the person is heard. It will be tailored to outcomes that individuals want from their accommodation and their support, and will help care home staff to better understand the needs and preferences of the person, and hopes for their new home. We will consult with people with a learning disability initially on appropriate format and content and will co-produce the final resource. This may be paper-based, electronic, audio or something different, but will be in a format considered appropriate and useable by people with a learning disability. The challenge will be determining an appropriate format and ensuring usability, both in the current place called home and in a care home, recognising limited WIFI accessible to some people with a learning disability.

2. To develop and pilot licensed training or an information resource/podcast series or similar for care home staff. Within the parameters of funding available, this will focus on transition to a care home by people with a learning disability and dementia. This requires consultation with care home staff initially to understand more about their knowledge gaps and will identify the most appropriate format that can be accessed and used in practice by the highest number of care home staff across the UK. A challenge will be developing something that is both feasible and sustainable. It will need to be accessed by care home providers at low cost, recognising sector challenges in releasing staff to take part in training or education. A further challenge is to consider how we will know if the training/learning has been successful beyond 'in the moment' feedback when completed.