Blog by Sharon Ward (Inspector)

I was involved in writing this new joint guidance.  I had previous experience of developing services for people living with learning disabilities and dementia. This gave me insight into what worked in practice, as well as the pitfalls and barriers to people experiencing good outcomes.

People living with a learning disability are living longer and are more likely to develop dementia than people in the general population. People with Down syndrome are at even greater risk of developing dementia.

People living with a learning disability and dementia are increasingly admitted to care homes. This is usually because their needs have increased, they require around the clock support, or their home cannot be adapted to meet their changing needs.

It was important that we produced this guidance to improve staff knowledge, skills, and confidence to meet people’s needs and ensure they experience good outcomes.  I felt staff needed to be aware of some of the key issues when supporting people living with a learning disability and dementia.  

When the decision for a person to move to a care home has been made, it’s important to develop a transition plan.  The plan should ensure the person and care home staff can get to know each other.  Staff should have the time to become familiar with the person’s important routines.  Relatives, friends, and any support staff should be involved in the planning process.  A significant change, such as moving to a new home, can have a detrimental impact on people’s physical, emotional, and psychological health.  A good transition can reduce the risks.  

People may be living in a supported living service or being supported in their family home. If the person has a care plan, this should move with them to the care home. This will provide information about the person, their choices, and routines as well as their needs and help make sure that they receive consistent care and support in the care home.

Staff working in care homes may not have previous experience of supporting people living with a learning disability.  People may communicate using alternative formats such as Makaton or visual formats.  Staff will need to learn the person’s language.  Support from the learning disabilities team will support staff’s learning as well as maintaining the person’s health and wellbeing.

People must be supported to spend their time in ways that are meaningful and purposeful for them. This is vital to maintain their health and wellbeing.  People living with Down Syndrome can develop dementia in their 40s and 50s.  This means they are likely to be significantly younger than the other people living in the home.  Staff in the home should offer appropriate opportunities and support people to maintain their independence.

People may be receiving support from another provider to enjoy social and leisure activities in their community.  This support should continue where people experience good outcomes.  The person may be at risk of social isolation if they are unable to communicate with others living in the home. Staff must consider how the person will be supported to build relationships in the home.

People living with a learning disability and dementia may also experience environmental barriers to maintaining independence.  For instance, people living with Down Syndrome may be short in stature.  Signage should be at eye level and in accessible formats, to enable people to find their way around the home. The height and depth of seating should be considered to enable people to get up independently.

I believe the guidance is really important and will support staff to ensure people to experience positive transitions and good outcomes.