This informal CPD article ‘Living Longer, Living Well: Dementia and Adults with a Learning Disability’ was provided by Hynte, a further education provider that delivers Health & Social Care courses. Their mission is to help people improve their skills and knowledge so as to find meaning and fulfilment in their work.
World Alzheimer’s Month is an opportunity to turn attention to people whose experiences can too easily be overlooked: adults with learning disabilities. Improvements in healthcare, care and community support mean that people with a learning disability are living longer than previous generations. With longer lives, however, comes an increased likelihood of developing age-related conditions, including dementia (2). Understanding how dementia can affect people with a learning disability and recognising that its early signs may look different from person to person, is essential if people are to receive the right support at the right time.
Research on learning disabilities and dementia
Research shows that adults with a learning disability are more likely to develop dementia than the general population and may develop it at a younger age. Alzheimer’s Society estimates that around one in five people with a learning disability over the age of 65 develop dementia, with the risk being particularly high for people with Down’s syndrome (1).
Most people with Down’s syndrome have an extra copy of chromosome 21. This chromosome contains the gene responsible for producing amyloid precursor protein, or APP. The additional copy leads to increased production of this protein and contributes to the development of amyloid plaques in the brain, which are associated with Alzheimer’s disease (1).
As a result, people with Down’s syndrome have a significantly increased likelihood of developing Alzheimer’s disease as they age. Around two in three people with Down’s syndrome over the age of 60 develop dementia, usually Alzheimer’s disease (1).
Recognising dementia
Recognising dementia can sometimes be more complicated for a person who already has a learning disability. Memory difficulties are a common symptom of dementia, but they may not always be the first or most noticeable change. For people with a learning disability, changes may instead become apparent in everyday skills, behaviour, mood, communication, reasoning or the way someone approaches familiar tasks (3).
This can be particularly relevant for people with Down’s syndrome. The British Psychological Society and Royal College of Psychiatrists note that dementia in people with Down’s syndrome may have a slightly different presentation, with behavioural or personality changes appearing early, although memory difficulties also remain an important feature (5).
Someone may become more withdrawn, anxious or irritable. They may begin to struggle with tasks or routines they previously managed, communicate differently, lose previously established skills or take longer to complete familiar activities. Changes in memory, reasoning, language and decision-making may also become noticeable (4).
As dementia progresses, physical changes may occur too, including difficulties with movement or coordination. For older adults with Down’s syndrome, the development of new seizures, or a worsening of existing epilepsy, can also be an important warning sign. Current professional guidance recommends that new or worsening epilepsy in an older person with Down’s syndrome should raise the possibility of Alzheimer’s disease and lead to further assessment (5).
Understanding an individual baseline
This is why understanding a person’s individual baseline is so important. A baseline is a picture of how somebody usually communicates, behaves, completes everyday activities and interacts with the people and environment around them. For adults with Down’s syndrome, Alzheimer’s Society recommends establishing a baseline assessment by the age of 30 so that future changes can be compared with the person’s earlier abilities and functioning (1).
Dementia is not best recognised by comparing one person with another. What matters is identifying meaningful changes from that individual’s own usual abilities and behaviour. This is particularly important because of the risk of diagnostic overshadowing.
Royal College of Psychiatrists
Risk of diagnostic overshadowing
Diagnostic overshadowing occurs when changes in somebody’s physical health, mental health, behaviour or abilities are attributed to their existing learning disability or another condition, meaning that a new health problem can be overlooked (6).
If somebody becomes more confused, withdrawn, distressed or less able to manage everyday activities, these changes should not automatically be explained by their learning disability. They deserve to be explored in their own right. It is equally important to remember that changes do not automatically mean somebody has dementia. Similar difficulties can be caused by other health conditions or circumstances, including depression, stress, thyroid problems, sensory impairments such as changes in hearing or vision, medication or other physical health conditions. Dementia assessments should therefore consider and, where possible, rule out other potential causes of cognitive, behavioural or functional change (4).
The British Psychological Society and Royal College of Psychiatrists also emphasise that changes in functioning can have a number of causes, including the normal ageing process and physical or mental health conditions, meaning that careful assessment is essential before dementia is diagnosed (5).
Knowing a person well
Knowing a person well can therefore make a significant difference. Families, support workers, carers, healthcare professionals and others who spend time with the person may notice subtle changes that would be difficult to identify during a single appointment or assessment. Dementia assessments for people with learning disabilities should involve both the individual, wherever possible, and the people who know them well (4).
Early recognition matters because it gives people the best possible opportunity to access appropriate assessment, care and support. Where possible, it can also allow the person to remain involved in decisions about their future, their preferences and the support that matters to them.
Continuing to enjoy a meaningful life
A diagnosis of dementia does not mean that somebody stops being themselves or stops being able to enjoy a meaningful life. With appropriate support, people with learning disabilities and dementia can continue to take part in familiar activities, maintain relationships, follow established routines and remain connected to their communities (4).
Person-centred support is particularly important. NICE guidance emphasises the human value and individuality of every person living with dementia, the importance of understanding their perspective and life experiences, and the role that relationships with others can play in promoting wellbeing (7,8). For a person with a learning disability and dementia, person-centred support might include maintaining familiar routines and environments, adapting communication to the individual, providing information in an accessible format and involving people who know them well.
Wherever possible, people with a learning disability and dementia should also be supported to remain in familiar environments. Environments can be adapted as a person’s needs change to help them understand their surroundings, remain engaged and maintain as much independence as possible (5).
Final thoughts
Support may need to change gradually as dementia progresses. What should remain constant is the focus on the individual: their preferences, relationships, personal history, communication and identity. The person comes first. Dementia is only one part of their life.
Raising awareness of dementia among people with learning disabilities is therefore about much more than recognising symptoms. It is about challenging assumptions, noticing changes, listening to the people who know an individual well and ensuring that concerns are properly explored.
The more widely we understand how dementia can affect adults with a learning disability, the more likely we are to recognise changes early and provide support that protects dignity, choice, independence and quality of life. This World Alzheimer’s Month, that understanding is worth carrying forward throughout the year.
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References
(1) Alzheimer’s Society (2026) Dementia and Down’s syndrome. Available at: alzheimers.org.uk/about-dementia/types-dementia/learning-disabilities-dementia/downs-syndrome (Accessed: 14 September 2026).
(2) Alzheimer’s Society (2026) Diagnosing dementia in people with a learning disability. Available at: alzheimers.org.uk/about-dementia/types-dementia/learning-disabilities-dementia/diagnosis (Accessed: 14 September 2026).
(3) Alzheimer’s Society (2026) Learning disabilities and dementia. Available at: alzheimers.org.uk/about-dementia/types-dementia/learning-disabilities-dementia (Accessed: 14 September 2026).
(4) Alzheimer’s Society (2026) Supporting a person with a learning disability and dementia. Available at: alzheimers.org.uk/about-dementia/types-dementia/learning-disabilities-dementia/support (Accessed: 14 September 2026).
(5) British Psychological Society and Royal College of Psychiatrists (2025) Dementia and people with intellectual disabilities: Guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia. Leicester: British Psychological Society.
(6) Mencap (2026) Young-onset dementia. Available at: mencap.org.uk/learning-disability-explained/learning-disability-and-conditions/young-onset-dementia (Accessed: 14 September 2026).
(7) National Institute for Health and Care Excellence (NICE) (2018) Care and support of people growing older with learning disabilities (NG96). London: NICE.
(8) National Institute for Health and Care Excellence (NICE) (2018) Dementia: assessment, management and support for people living with dementia and their carers (NG97). London: NICE.
