The average age of onset of dementia in a person with Down’s syndrome is early/mid 50s. The average age of a care home resident in the UK is between 86. You can see the challenge. Already there is a difference not only in age, but in needs.
In the first instance, we should all be supported to remain in our current home as dementia advances if this is our preference. However, there may be occasions when this is no longer practical, safe or indeed desired. The decision for a person with a learning disability to move to a care home should not be solely based on cost or other service driven reasons. For example, if someone is unable to navigate stairs, an upstairs room in a care home is still not appropriate and may restrict outdoor access. Similarly, if waking night staff were previously required, the care home may be unable to provide the same therapeutic environment at night. Staff working in care homes require knowledge of how both dementia and a learning disability impact on people, and how to support needs in what should be an age-friendly environment.
For all of the above reasons, there is often the assumption that this makes a care home an inappropriate setting for people with a learning disability and advancing dementia. Yet, we know this is where many individuals live – at times following a crisis such as the sudden change in health of a family member. The number of residents cited as living in care homes does vary between studies and different parts of the UK, and there are some care homes that only provide accommodation for people with a learning disability.
Is it more important to have the right support and training in place for care home staff to enable best support for all residents, including those with a learning disability? My New Home is guidance for care home staff developed by HealthCare Improvement Scotland in collaboration with Alzheimer Scotland, Quarriers, Thorntoun Estate Care Home, Inverclyde Health and Social Care Partnership, NHS Lothian and the University of Stirling. The guidance is for staff and services involved in supporting people with a learning disability and advancing dementia. It aims to ensure that, when and where required, transition to a care home is appropriate and provides the best outcome for the person. It also help to identify priorities for improvement and to inform training and service/quality improvement activities.
Crucially, we need to stop people with a learning disability falling in the gap between services after a diagnosis of dementia. Part of working towards this is ensuring that care home staff are trained and confident in dementia care, including for people with a learning disability.
Read My New Home here
Find out how SquarePeg Training can support knowledge and career development of care home staff here.