Learning disability and dementia: why the right support matters

Dementia can affect many parts of a person’s life. It can change how someone remembers things, communicates, behaves and manages everyday tasks.

For people with learning disabilities, the early signs of dementia can sometimes be harder to recognise. This can mean people wait longer for the right assessment, diagnosis and support.

At EveryStory, we believe people should be recognised for who they are and supported in a way that fits their life. When someone with a learning disability develops dementia, their support needs to recognise all parts of their experience.

What is Dementia?

Dementia is a condition that affects the brain. It describes a group of symptoms that can affect memory, problem-solving, language and behaviour over time.

Some people may become more forgetful. Others may find it harder to follow conversations, complete familiar routines or recognise what is happening around them. Some people may become more anxious, confused, withdrawn or distressed.

Dementia affects everyone differently, and it can change over time. Understanding the person is just as important as understanding the condition.

How dementia can look different for someone with a learning disability

For people with a learning disability, recognising the early signs of dementia is not always straightforward. Changes can be small at first and may not always be easy to separate from the person's usual way of communicating or doing things.

Rather than looking for one obvious sign, it is often about noticing changes from what is typical for that person.

Someone may find routines they have followed for years more difficult, find it harder to communicate, lose skills they previously had, become less confident or need more support with everyday tasks. They may seem more anxious, withdrawn or confused, or lose interest in activities they usually enjoy.

Not every change will be dementia, but changes should not be dismissed simply because someone has a learning disability. They should be explored with curiosity and care.

Families, friends and people who support someone can provide valuable insight into what is usual for them and what has changed. This information can help health professionals make the right assessment and plan the right support.

Dementia and Down’s syndrome

People with learning disabilities are more likely to develop dementia than the general population. The increased risk is particularly significant for people with Down’s syndrome.

People with Down’s syndrome are much more likely to develop Alzheimer’s disease, often at a younger age than other people. Research suggests that around two-thirds of people with Down’s syndrome over the age of 60 will develop dementia. Find out more about this here: https://www.alzheimers.org.uk/about-dementia/types-dementia/learning-disabilities-dementia/downs-syndrome 

This does not mean everyone with Down’s syndrome will develop dementia. However, it does mean that changes in memory, behaviour, communication or everyday skills should be taken seriously and explored rather than being dismissed as part of ageing.

Why early diagnosis matters

Early diagnosis is important. It helps people understand what is happening and allows access to the right support sooner. It also gives someone the opportunity to be involved in decisions about their future and share what matters most to them.

For people with learning disabilities, early diagnosis often starts with noticing change. Annual health checks are an important opportunity to talk about concerns, review health and wellbeing, and identify changes that may need further assessment. Everyone aged 14 and over who is on their GP’s learning disability register is entitled to a free annual health check.

Regular monitoring of changes is also important. This is not about watching for problems or overanalysing. It is about knowing what is typical for that person and feeling confident to ask questions if something does not seem right.

If there are concerns, people should be referred for a specialist assessment. This works best when professionals with expertise in both learning disability and dementia work together. This helps make sure possible signs of dementia are recognised, other causes of change are considered, and people receive the right support as early as possible.

Recognising and challenging diagnostic overshadowing

People with learning disabilities can experience health inequalities, including delays in recognising and diagnosing health conditions. Diagnostic overshadowing is one of the barriers that can contribute to this.

Diagnostic overshadowing happens when changes in someone's health, behaviour, communication or abilities are assumed to be part of their learning disability, rather than being explored as possible signs of a new health condition.

For people with learning disabilities, changes linked to dementia may not always look the way people expect. A person may communicate differently, become more anxious, lose confidence or find things they have always done more difficult. These changes can sometimes be overlooked because they are seen as part of the person's existing disability or ageing.

We all have a role in challenging this. Having a learning disability should never mean that changes are dismissed or explained away.

This means continuing to ask questions, challenge assumptions and ensuring people have access to the right assessments and support.

Supporting someone with dementia

A dementia diagnosis can bring uncertainty for the person, their family and the people who support them. It can raise questions about what will change and what support will be needed in the future.

But a diagnosis can also be a turning point. It can help people understand changes that have been happening, make sure the right support is in place and plan ahead.

Knowing the person well

Understanding someone’s life history, communication style, interests and relationships helps staff teams provide support that feels right for them.

Knowing what is usual for someone helps teams recognise changes and respond in the right way.

Maintaining familiar people and places

Many people have built important relationships with family, friends, staff and their community over many years. Familiar people who understand someone’s personality, communication and preferences can provide reassurance and consistency as things change.

Wherever possible, people should be supported to remain connected to familiar people and places.

Adapting communication

Dementia can affect the way someone communicates and understands information. Communication support may need to change too.

This might include giving someone more time to respond, using familiar words, visual prompts, symbols or other communication tools that help them express their choices and needs.

Making the environment work

Familiar objects, photographs, memory boxes and meaningful items can help people feel connected and comfortable.

Clear layouts, good lighting and reducing unnecessary noise can also help create a calmer and more supportive environment.

Supporting choice

Having dementia does not mean someone should stop being involved in decisions about their life.

It is important to plan ahead while someone is able to share their wishes, preferences and what matters most to them. Recording choices for the future helps keep the person’s voice at the centre of decisions, particularly if their ability to communicate their choices changes over time.

Good planning means decisions are made alongside people, not for them.

Bringing the right expertise together

People with learning disabilities and dementia should not have to fit into separate systems.

The best support comes when learning disability and dementia expertise work together, ensuring the person receives support that understands their whole life, not just one part of it.

Why wider change is needed

This is bigger than one person or one support team. Commissioners and providers have an important role in making sure people with learning disabilities and dementia can access joined-up support.

This could include specialist services, better training, shared approaches and stronger links between learning disability and dementia teams.

People living with both a learning disability and dementia deserve support that understands the full picture.

A place where who you are matters most

At EveryStory, our purpose is to provide a place where who you are matters most. That purpose is especially important when someone’s needs begin to change.

A learning disability should never prevent someone from receiving high-quality dementia support.

People deserve support that sees their history, their personality, their relationships, their routines, their choices and their future.