5. After a diagnosis
Someone with a learning disability may not fully understand a diagnosis of dementia or what it will mean for them, but it is still their right to know if they wish to. The explanation should be planned and shared with the person carefully, using language familiar to them. Information about the diagnosis is best broken down into small chunks and tailored to their ability to understand the past, present and future, as well as to their individual communication needs.
Easy-read information about dementia, developed specifically for people with learning disabilities, is widely available and can be used to support the sharing of the diagnosis.
The person may be living with a partner, friend or other residents with a learning disability when they are diagnosed. It is important to consider the impact of dementia on these people, as well as on the person receiving the diagnosis.
After the diagnosis, the multidisciplinary team will agree an individual care plan with the person which sets out how they can be supported to live well. The team will discuss this plan with those supporting the person. They will agree when the plan will be reviewed and updated, including checking for and looking into any changes in the person's health, behaviour or living skills.
Dementia is a progressive condition. People progress from mild to moderate dementia and, eventually, to more severe dementia over a period of years. Soon after diagnosis is the time to make or review any advance plans which have been made about what the person wishes for their future. Plans may cover the immediate future but also care options as the person's dementia progresses. By law, the person with dementia should be supported to be involved in this advance care planning as much as they are able.