Diagnosing dementia in people with a learning disability

Tips to support a person with learning disabilities getting a dementia diagnosis, including discussing the diagnosis, dealing with emotions, and agreeing a care plan.

Learning disabilities and dementia
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Getting a dementia assessment for a person with a learning disability

The assessment for dementia is best done by a multidisciplinary team. They should all be specialists in learning disabilities, apart from the GP, who may not be a specialist. This team is likely to include a:

  • psychiatrist
  • community learning disability nurse or an occupational therapist
  • clinical psychologist.

The multidisciplinary team should speak to the person with a learning disability where possible, as well as their main carer and any care service staff who know the person well. This helps them to find out how the person feels about things and how they communicate.

The assessment will include the following stages.

  • A detailed look at their personal history – This should include any important changes in the person’s life, such as moving home, the recent death of someone close to them, or changes to their carer. This gives more information about how the person may be feeling – and why. It helps to rule out other underlying causes for changes in behaviour or abilities, such as stress or depression.
  • A full health assessment – This should rule out any physical problems that could cause the person’s changes in behaviour or cognitive problems. There are lots of conditions that have similar symptoms to dementia, but that are treatable – for example an underactive thyroid, which is common in people who have Down’s syndrome.
    Any medicines they are taking should also be reviewed as part of this assessment. And their vision and hearing should be tested too because sensory impairments are more common in people with learning disabilities.
  • Cognitive and mental state assessments – There is no single test to diagnose dementia. However, there are a range of screening tools designed to help healthcare professionals diagnose dementia in people with Down’s syndrome. The team will observe things like the person’s alertness, mood and their orientation to time, place and person. They will also consider the person’s mental health and their ability to carry out day-to-day activities.

Any assessment should involve the person as much as possible. If this isn’t possible, the person’s main carer, who may be you, could be asked to complete an assessment that outlines changes in the person.

The team of specialists will then review the assessments and use the results alongside other details they know about the person to inform any diagnosis. A diagnosis should never be made solely on the cognitive or mental state assessments. The same assessments should be used each time the person is assessed. The team can then compare these and see how the person’s functioning has changed over time.

Tests and scans used to diagnose dementia

A dementia diagnosis can be based on several tests, scans and assessments. This page describes the tests and scans you might have if your GP refers you to a specialist.

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Dealing with a dementia diagnosis in a person with learning disability

A dementia diagnosis can cause a range of emotions, both for the person who has been diagnosed and for their family, friends and carers.

Feeling sad, worried and angry are all common responses. Some people also feel relieved as they finally have an explanation for changes and challenges they’ve been experiencing.

The person may already receive social care at home or have help to live on their own. There are also experts who know about dementia and learning disabilities who can help them to

A person with a learning disability has a right to know about their dementia diagnosis. However, they may not fully understand what it is, or what it means for them.

Tips for discussing a dementia diagnosis with a person with learning disability

Here are some tips to help you discuss the diagnosis in a way that is sensitive and easy to understand.

Think about what the person currently understands about their past, present and future – for example, if they have an understanding of what their future may look like, they may understand more about how dementia might affect them.

  • Consider which details are needed at that time. You don’t need to tell them everything at once.
  • Slowly give the person one piece of information at a time to help them process it.
  • Check that they understand what you are saying regularly.
  • Use language or signs that the person is familiar with. Avoid jargon.
  • Use pictures if this helps their understanding.
  • Make sure everyone who talks to the person uses the same terms as much as possible.

Telling other people about the dementia diagnosis of a person with a learning disability

The person you care for may live with someone else with a learning disability, such as a partner, friend or other residents.

Sharing the diagnosis with them can help them to understand what is happening. It will also give you a chance to talk about things they can do to help, for example supporting the person with hobbies.

Make sure you check with the person before you share their diagnosis. If they don’t have capacity to make the decision, you should consider what is in their best interest.

Agreeing a care plan for a person with dementia and a learning disability

After the dementia diagnosis, the care or multidisciplinary team will agree a care plan or update an existing plan, with the person and anyone supporting them. The aim of this plan is to help them to live well with dementia.

The team will also agree when the plan should be updated, including checking for and looking into any changes in the person’s health, behaviour or daily living skills. With the right support and adaptations in place, many people with dementia are able to carry on doing the things that they enjoy.

How to get a dementia diagnosis

The dementia diagnosis process can vary for everyone. This page describes the typical steps involved in getting a diagnosis, including what might happen if you are referred to a specialist.

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