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Learning disabilities and dementia

People with a learning disability are at greater risk of developing dementia, especially young onset dementia (when dementia symptoms develop before the age of 65).  

This information, produced in conjunction with MacIntyre – the charity for people with learning disabilities – will help you understand how to support someone with a learning disability and dementia. 

If you’re noticing changes in the person with a learning disability that could be caused by dementia, it is important for them to see their GP.  

These changes might include: 

  • changes in their personality or mood  
  • difficulty making decisions  
  • difficulty with things they could normally manage independently 
  • memory loss 

A number of other conditions and illnesses can cause changes similar to dementia, such as depression, vitamin deficiency and thyroid problems.  

To rule these out, the GP should offer to do blood tests, a chest X-ray (if necessary), a brain scan and a urine sample.  

The GP may also briefly test the person’s cognitive abilities by asking them to: 

  • state the day and date  
  • name some common items  
  • remember something simple to test concentration and short-term memory, eg an address 

If the person is likely to struggle with these tests because of their learning disability, you should tell the doctor. 

If the GP believes the person may have dementia, they may then refer them for further investigations.  

These could be:  

  • at a memory clinic  
  • at a learning disability clinic 
  • with a doctor who specialises in learning disability and/or dementia, eg a psychiatrist 

Getting an accurate diagnosis of dementia for a person with a learning disability can be difficult, as dementia symptoms are often put down to the person’s learning disability. 

In some cases, specialist dementia services like memory clinics don’t even accept referrals for people with learning disabilities. 

If you need support with getting a diagnosis, you can call our free Dementia Helpline to speak to a specialist dementia nurse.

If the person with a learning disability is diagnosed with dementia, the health professional should tell you: 

  • what type of dementia they are thought to have  
  • whether any treatment might be suitable 
  • which other specialists the person will be referred to – eg a social worker, occupational therapist or psychiatrist 
  • if there is any support for you and the person you care for  

You can also speak to your local council or look online for information on support groups and services in your area, such as dementia specialist Admiral Nurse services or MacIntyre Memory Cafés for people with learning disabilities and dementia.  

The following tips may help to make life easier for the person with the learning disability and their family. 

  • Support the person in eating and drinking well, getting enough sleep, and taking part in physical activity if possible 
  • Keep up with their health appointments, including optician, dentist and hearing checks. Things like hearing and sight problems can make confusion worse 
  • Try to remove safety hazards from the person’s home so they can live as safely and independently as possible 
  • Request a Needs Assessment from Social Services to establish any new care and support needs
  • Help the person remain in their usual routine and carry on with activities they enjoy, with adaptations and support if necessary 
  • Be aware of the person’s feelings and emotions. It is often assumed that people with dementia cannot experience anxiety and depression, but this is not the case 
  • Spend time together doing activities you both enjoy to maintain a connection between you 
  • Many people with learning disabilities and dementia have difficulties communicating, so be prepared to try different methods of communication  
  • Keep explanations simple, sentences short and questions direct rather than open-ended 
  • Help them create a life story– a record of important details about their life. This can help other people relate to them more easily 
  • Talk to the person’s other family and friends to help them understand the changes that are happening  
  • Consider enrolling in a carer education programme – available from organisations like Dementia Carers Count and tide – to develop new skills
  • Help the person apply for lasting power of attorney (LPA), if they haven’t already. It will allow you and/or other nominated people to make important health, care and financial decisions if the person lacks the capacity to do so themselves 
  • Work with the person to complete an Advanced Care Plan – a document setting out their wishes for future medical and social care 
  • Request a Carer’s Assessment from your local authority to determine what support you need as a carer 
  • Ask your GP surgery to register you as a carer so you receive support such as carer health checks and a free flu jab  

To speak to a dementia specialist Admiral Nurse about learning disabilities and dementia, or any other aspect of dementia, please call our free Dementia Helpline on 0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm, every day except 25th December), email helpline@dementiauk.org or you can pre-book a phone or video appointment with an Admiral Nurse.

Dementia UK resources

MacIntyre resources

macintyrecharity.org
General enquiries: 01908 230100
Email: hello@macintyrecharity.org 

Other sources of information