Adults with Learning Disabilities and Dementia

Thanks to continuous advancements in medical and social care, individuals with learning disabilities are living longer than ever before. While this is, of course, something to be celebrated, we must also acknowledge the fact that with longer lifespans comes an increased risk of developing illnesses associated with older age, such as dementia.

This has troubling ramifications for the individuals we support, as well as everyone in their wider network, as, according to the Alzheimer’s Society, individuals with a learning disability are at an increased risk of developing dementia and experiencing more severe symptoms.

Watch our webinar recording about supporting individuals with learning disabilities and dementia.

Statistics about learning disabilities and dementia

So what do the statistics tell us? About 1 in 5 people with a learning disability over the age of 65 will develop dementia, and the risk is even higher for individuals with Down Syndrome. Indeed, two thirds of individuals with Down Syndrome over the age of 60 develop dementia, usually Alzheimer’s disease. While research is still ongoing, this is thought to be because they have an extra copy of chromosome 21 which can increase their risk factor.

And it’s not only individuals with Down Syndrome who are affected: according to Dementia UK, the number of individuals with learning disabilities being diagnosed with dementia is on the rise, and they are more likely to experience symptoms at a younger than average age.

Given the growing prevalence of dementia among individuals with a learning disability, it is vital that we, as professionals, educate ourselves around the signs and symptoms and devise appropriate strategies to support those in our care.

Symptoms of dementia in a person with a learning disability

The symptoms of dementia in individuals with mild or moderate learning disabilities are very similar to those without a learning disability and can include:

• Change in personality
• Mood swings
• Poor concentration
• Withdrawal and social isolation
• Difficulties around decision-making
• Difficulties around completing usual tasks
• Changes to memory, reasoning or language

Early signs to look out for

Everyone is different and symptoms can be varied and appear at different times. This can make spotting early warning signs incredibly challenging. However, when we from strong, trusting relationships with individuals, we are often well placed to identify subtle changes over time.

We may notice things such as:

• Changes to daily living skills, such as repeating questions, or suddenly having difficulty with tasks normally managed independently, such as shopping or paying bills
• Differences in the way tasks are approached, for example, becoming less willing to cooperate, or becoming restless or agitated when asked to do things
• Changes to memory, such as forgetting carers’ names or faces
• Sleep disturbances

It can often be harder to spot subtle changes in individuals with more complex or profound disabilities who may already have difficulty with communication, completing tasks, or expressing feelings, so we need to monitor individuals closely and be alert to the smallest changes.

Strategies to support individuals with learning disabilities and dementia

It is vital to devise practical, personalised strategies to support people with learning disabilities and dementia to protect their physical, emotional and mental health. These strategies should include a range of interventions, support, and activities centred around healthy living, emotions, feelings, and communication, incorporating person-centred care principles.

1: Promote healthy living

• We can ensure individuals are eating and drinking enough and have food choices that meet their various sensory needs. We should also look out for signs of weight loss/gain, dehydration, or constipation.
• Offering physical, relaxation, and brainteaser activities such as quizzes, chairobics, or massage can help promote participation.
• By encouraging good sleep patterns, we can ensure that individuals don’t become overtired – something which can exacerbate symptoms of dementia.

2: Adapt the environment

• We can make the environment safe and dementia-friendly by clearly labelling doors and cupboards.
• We can make sure there is good lighting, remove mirrors and cover reflective glass with a matt surface.
• Using bright and contrasting colours, including for plates and cutlery, toilet seats and towels means they can easily be recognised.
• It’s important we keep environments clutter-free, remove trip hazards, and ensure doorways and exits are clearly marked.
• Background noises from conversations, radios, or TVs can confuse people and cause distress, so we can prioritise creating calm environments.
• Where it is safe, practical and possible, we can support individuals to stay in their current home, in environments that are familiar, with carers they have established safe trusting relationships with. Moving to a new, unfamiliar environment unfamiliar can be stressful and upsetting for everyone involved. However, if a move has to happen because we are not able to meet an individual’s needs, this should be planned and not rushed to minimise distress and disruption.