Ageing with a learning disability | Provider Hub

It’s important to remember that People do not die from having a learning disability alone. The above only happens if people don’t get the right treatment at the right time. Your role as Service Providers, is crucial in making sure that this happens.

"The average age at death for people with a learning disability is 23 years younger for men and 27 years younger for women than the wider population."

"41% of adult deaths were from treatable medical causes and 24% were from preventable medical causes" (Source: learning disability mortality review)

‘Today’s older people with learning disability are the first generation to survive beyond childhood and adulthood into older age….it is crucial that these additional years are as happy, healthy and fulfilling as possible.’ (Source: Growing Older: Improving Support for People with Learning Disabilities. 2013)

LeDeR is a service improvement programme for people with a learning disability and autistic people.

Established in 2017 and funded by NHS England and NHS Improvement, it's the first of its kind.

LeDeR works to:

improve care for people with a learning disability and autistic people

reduce health inequalities for people with a learning disability and autistic people

prevent people with a learning disability and autistic people from early deaths

Research has shown that on average, people with a learning disability and autistic people die earlier than the general public, and do not receive the same quality of care as people without a learning disability or who are not autistic.

LeDeR reviews deaths of people with a learning disability and/or who are Autistic, to see where there are areas of learning, opportunities to improve, and examples of excellent practice. This information is then used to improve services for people living with a learning disability and autistic people.

Take a look at some useful resources and information that have been produced and developed through the work of LeDeR:

20231019_LeDeR_action_from_learning_report_FINAL.pdf – This LeDeR action from learning report, gives examples of some of the local and national actions across health and social care services to reduce health inequalities for people with a learning disability and autistic people.
LeDeR - Resource bank – useful documents to help people better manage their health needs
NHS England Easy Read sharing information – easy read document about the importance of and how information is shared about a person whilst they are receiving health interventions.
NHS reasonable adjustments flag - youtube. – a short film about how sharing information, can help staff in health services know the right way to work with people
Reasonable Adjustment Flag - NHS England Digital - The Reasonable Adjustment Flag was developed in the NHS Spine to enable health and care workers to record, share and view details of reasonable adjustments across the NHS, wherever the person is treated.
screening prevents disease and can change lives - Guidance to help people with a learning disability better understand and access screening if they wish to do so.
NHS Accessible information standards - Making health and social care information accessible
NHS England information on Accessible information standards -More detailed information about different types of accessible information and communication support and who may need them.

LeDeR is a service improvement programme for people with a learning disability and autistic people.

Established in 2017 and funded by NHS England and NHS Improvement, it's the first of its kind.

LeDeR works to:

improve care for people with a learning disability and autistic people

reduce health inequalities for people with a learning disability and autistic people

prevent people with a learning disability and autistic people from early deaths

Take a look at some useful resources and information that have been produced and developed through the work of LeDeR:

20231019_LeDeR_action_from_learning_report_FINAL.pdf – This LeDeR action from learning report, gives examples of some of the local and national actions across health and social care services to reduce health inequalities for people with a learning disability and autistic people.
LeDeR - Resource bank – useful documents to help people better manage their health needs
NHS England Easy Read sharing information – easy read document about the importance of and how information is shared about a person whilst they are receiving health interventions.
NHS reasonable adjustments flag - youtube. – a short film about how sharing information, can help staff in health services know the right way to work with people
Reasonable Adjustment Flag - NHS England Digital - The Reasonable Adjustment Flag was developed in the NHS Spine to enable health and care workers to record, share and view details of reasonable adjustments across the NHS, wherever the person is treated.
screening prevents disease and can change lives - Guidance to help people with a learning disability better understand and access screening if they wish to do so.
NHS Accessible information standards - Making health and social care information accessible
NHS England information on Accessible information standards -More detailed information about different types of accessible information and communication support and who may need them.

Supporting individuals with learning disabilities as they age requires a holistic approach that addresses their physical, mental, social needs and wellbeing. View more information below.

Implications of ageing for individuals with learning disabilities

Physical Health: Individuals with learning disabilities often face a higher risk of developing chronic health conditions such as cardiovascular diseases, diabetes, and respiratory issues. Regular health screenings and proactive management of these conditions are crucial.

Dementia: People with certain learning disabilities, like Down’s syndrome, are at a higher risk of developing dementia at an earlier age. Specialised care and early intervention can help manage symptoms and improve quality of life.

Stress and Anxiety: Ageing can bring about significant lifestyle changes, which may lead to increased stress and anxiety. Notice the subtle differences that might signify that something is wrong or changing and provide mental health support to help individuals cope with these changes

Depression: The onset of physical health problems and social isolation can contribute to depression. Regular well-being check-ups and social engagement activities can help mitigate these effects.

Isolation: As individuals age, their social networks may shrink, leading to feelings of loneliness and isolation. This may be due to losing family members and support staff, who are highly likely to be the main source of contact with others. Encouraging participation in community activities and maintaining strong support networks are essential and will help people make new connections.

Support Systems: The role of caregivers and support systems becomes even more critical as individuals with learning disabilities age. Training for caregivers on the specific needs of ageing individuals with learning disabilities can improve care quality. Make sure your staff have attended the ECC fully funded Ageing Well with a disability training, bookable through the Events – Ageing Well Training for AWD Providers.

Personalised Care: Each individual with a learning disability will age differently, and their care needs will vary. Personalised care plans that consider the unique needs and circumstances of each person are vital.

Early Planning: Due to the increased likelihood of health issues, planning for old age should start earlier. This includes regular health checks, financial planning, and discussions about future care preferences.

Top tips for ageing well with a learning disability

Regular Exercise: Engage in activities like walking, swimming, or dancing. Exercise helps maintain mobility, balance, and overall health.
Balanced Diet: Ensure a diet rich in fruits, vegetables, lean proteins, and whole grains. Proper nutrition supports energy levels and prevents chronic diseases. Using an air fryer can be really helpful when cooking food that would have been traditionally fried/cooked using oil and can help turn unhealthy choices to healthy choices.
Health Screenings: Regular health checks, including annual health assessments, can help detect and manage health issues early. Consider what routine checks people have as they age and make sure the people you are supporting get the same.

Mental Stimulation: Activities like games/puzzles via apps or other means or learning new skills can keep the mind active and sharp. Help people be creative in sourcing new activities to try.
Emotional Support: Encourage expressing feelings and provide support for any signs of anxiety or depression. Be open to the reality of ageing which comes to us all and make ageing as positive experience as possible.
Social Connections: Maintain strong social ties through community activities, clubs, or support groups. Social interactions can prevent isolation and boost well-being.

Routine and Structure: Adapt established daily routines to provide a sense of stability and predictability which will help people to feel safe and secure as things begin to change.
Assistive Technology: Utilise tools and devices that can aid in daily tasks, such as medication reminders or mobility aids. Help the people you support to find out more about the latest apps and equipment to maximise opportunities to maintain independence as far as possible.
Adapted Living Spaces: Ensure living spaces are safe and accessible, with modifications like grab bars or ramps if needed. Think ahead to what someone might need and help the person to forward plan.

Future Care Plans: Help develop a plan for future care needs, including legal and financial arrangements. This can provide peace of mind for both the individual and their family.
Legal Rights and Services: Understand the legal rights of individuals with learning disabilities and how to access additional support services. This includes knowing about reasonable adjustments and available resources.

Sensory Health: Regularly check and care for eyesight and hearing. Addressing changes early can prevent further complications
Dental Care: Maintain good oral hygiene and schedule regular dental check-ups.
Dementia Awareness: Be aware of the signs of dementia and seek early diagnosis and support if needed. Specialised care plans can help manage the condition effectively.

Hobbies and Interests: Encourage participation in activities that bring joy and fulfilment. Whether it’s gardening, painting, music or skydiving, doing what they love can enhance quality of life.

Last updated: 13/02/2025

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