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New care home guidance for people with learning disabilities who have dementia 

Guidance has been published to help care homes in Scotland provide appropriate support for people with learning disabilities who have a diagnosis of dementia.

Supporting people with an intellectual/learning disability and advanced dementia moving into a care home

The new guidance has been developed by Healthcare Improvement Scotland and the Care Inspectorate. It is believed that the national guidance is the first of its kind. 

Care homes for older people may be reluctant to admit people living with a learning disability and dementia, due to uncertainty as to how to meet their needs. This guidance focuses on people with a learning disability and advancing dementia who are moving to a care home because their needs have increased and can no longer be met in their own home. The guidance aims to ensure that transition to a care home is appropriate and provides the best outcomes for the individual. 

Age-related dementia is more common at earlier ages in people living with a learning disability than in the rest of the population (about 13% in the 60 to 65 year old age group compared with 1% in the general population). At least 30% of people living with Down’s syndrome who are in their 50’s may experience dementia, and 50% in their 60s. 

We spoke to people with learning disabilities and dementia as part of the creation of the guidance. One individual said: “It’s an environment I don’t know about. It’s scary.” While another commented: “It is important to help staff in the care home understand my story and get to know me.” 

Professor Karen Watchman, international expert in learning disabilities and dementia and Senior Lecturer in Ageing and Dementia, University of Stirling, welcomed the guidance, saying: 

“People with a learning disability are now living for longer and are more likely to develop illnesses like dementia. We hope the new guidance will ensure that any person with a learning disability and dementia will be at the centre of any decision making and their physical needs are met. Moreover, that staff who support will have the appropriate knowledge, skills and training.” 

Laura Porter is Interim Service Manager for learning disability at Inverclyde Health and Social Care Partnership (HSCP). Speaking of the guidance, she said:  

“The need to move to a care home can be difficult for people with learning disabilities. Families and carers find it difficult to cope with increasing needs, and the person’s confusion and loss of skills. I hope the guidance will be something that can be passed to families and to care home staff, to reassure them that if they accept a placement for someone with learning disabilities, there will be support available.” 

Inverclyde HSCP Learning Disabilities Team case study:

This case study is an example of how Inverclyde HSCP Learning Disabilities team supported a local care home, in the care of ‘Bob’, a 50 year old gentleman with Downs’ syndrome who had to move to a care home following a dementia diagnoses. 

Notes to editors 

The purpose of Healthcare Improvement Scotland is to enable the people of Scotland to experience the best quality of health and social care. Key components of our organisation include Improvement Hub (ihub), Community Engagement, Scottish Health Technologies Group, Scottish Intercollegiate Guidelines Network (SIGN), Scottish Medicines Consortium and the Scottish Antimicrobial Prescribing Group. 

The Care Inspectorate is a scrutiny body which supports improvement, looking at the quality of care in Scotland to ensure it meets high standards. Where we find that improvement is needed, we support services to make positive changes. The organisation’s vision is that everyone experiences safe, high-quality care that meets their needs, rights and choices. 

This guidance was developed by Healthcare Improvement Scotland and the Care Inspectorate in collaboration with: 

  • Alzheimer Scotland
  • Inverclyde Health and Social Care Partnership (HSCP)
  • NHS Lothian
  • Quarriers
  • Scottish Government
  • Thorntoun Estate Care Home, and
  • University of Stirling.

For more information, contact Stephen Ferguson, Communications Manager, on 07779 329 689 or at stephen.ferguson@nhs.scot 

Find out more about the Focus on Dementia programmes