Helpful hints to support people with learning disabilities living with dementia

A recent Down’s Syndrome Association event was a helpful reminder about what we all need to think about when involved in the lives of people with learning disabilities.

The day was facilitated by Diana Kerr who has carried out research and developed good practice in this field. The event was a helpful reminder about what we all need to think about when involved in the lives of people with learning disabilities. Here are a few of the many useful points made by Diana.

  • It is well known that early diagnosis of dementia is poor for people with learning disabilities even though the incidence of dementia is known to be high, especially amongst people with Downs syndrome. There are many reasons why this is not happening; one is the lack of awareness amongst paid workers and family carers about the changes that might indicate dementia. Diana suggested support staff should look out for an increase in the amount of prompting they are giving to someone (for example, starting to use visual prompts such as showing someone their coat to indicate it’s time to go home whereas previously they might have simply said ‘It’s time to go home’). This increase can go unnoticed, especially when someone is being supported by a number of different people during the day. It is therefore important that support workers are good at recording any changes. But early diagnosis is only part of the story and needs to be matched with an appropriate response so that people get the right support.
  • The importance of thinking about the environment to reduce stress and anxiety was highlighted. It should be calm with reduced noise levels and people should be able to settle somewhere rather than regularly being asked to move around to different activities. Good signposting for where things are and what is happening also help people to make sense of their environment. At mealtimes, involve a person in a task that gives a cue that it is nearly lunchtime, such as setting the table or going into the kitchen to see the food being prepared.
  • This doesn’t mean the environment should be dull and boring- it needs to be suitably stimulating. An example of this would be having an outside view from a window, perhaps with a bird table, which means others can sit beside someone and chat about what they can see outside. This has an additional advantage of providing a visible cue about the time of day depending on the light and what people are doing outside.
  • Another helpful point was the need to acknowledge that people with dementia sometimes do not sleep well and may get up at night. This often triggers a move to a nursing or residential care home. Instead, it would make more sense to invest in good waking night staff who can spend quality time with the person when they wake up. If a person is having difficulty getting enough nutrition, this time could also be used encourage them to have some nutritious food as there is time to support someone 1:1 whilst other people are fast asleep!
  • There are many people living very full lives with dementia. We need to make sure that staff, who are working with people with learning disabilities, have the knowledge and understanding to recognise the early signs of dementia and give the best support following a diagnosis of dementia.

    Good person-centred planning throughout adult life, including making life stories, will help to build solid foundations upon which personalised support can be developed for people with learning disabilities living with dementia.