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Care and support of people growing older with learning disabilities

About

What is covered

This interactive flowchart covers care and support for people with learning disabilities as they grow older. It covers identifying and assessing their changing needs, making information and services accessible, planning for the future, and organising and delivering services. It aims to ensure that adults with learning disabilities can access services, including health, social care, housing and end of life care, that will support them as they grow older.

Updates

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Short Text

Everything NICE has said on the care and support of people growing older with learning disabilities

What is covered

This interactive flowchart covers care and support for people with learning disabilities as they grow older. It covers identifying and assessing their changing needs, making information and services accessible, planning for the future, and organising and delivering services. It aims to ensure that adults with learning disabilities can access services, including health, social care, housing and end of life care, that will support them as they grow older.

Sources

NICE guidance and other sources used to create this interactive flowchart.

Quality standards

Quality statements

Effective interventions library

Effective interventions library

Successful effective interventions library details

Implementation

NICE has produced resources to help implement its guidance on:
For social care terms, see the Think Local, Act Personal Care and Support Jargon Buster.

Information for the public

NICE has written information for the public on each of the following topics.

Pathway information

Person-centred care

People have the right to be involved in discussions and make informed decisions about their care, as described in your care.
Making decisions using NICE guidelines explains how we use words to show the strength (or certainty) of our recommendations, and has information about prescribing medicines (including off label use), professional guidelines, standards and laws (including on consent and mental capacity), and safeguarding.

Your responsibility

Guidelines

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.
Local commissioners and providers of healthcare have a responsibility to enable the guideline to be applied when individual professionals and people using services wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with complying with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Technology appraisals

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, health professionals are expected to take these recommendations fully into account, alongside the individual needs, preferences and values of their patients. The application of the recommendations in this interactive flowchart is at the discretion of health professionals and their individual patients and do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.
Commissioners and/or providers have a responsibility to provide the funding required to enable the recommendations to be applied when individual health professionals and their patients wish to use it, in accordance with the NHS Constitution. They should do so in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Medical technologies guidance, diagnostics guidance and interventional procedures guidance

The recommendations in this interactive flowchart represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, healthcare professionals are expected to take these recommendations fully into account. However, the interactive flowchart does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer.
Commissioners and/or providers have a responsibility to implement the recommendations, in their local context, in light of their duties to have due regard to the need to eliminate unlawful discrimination, advance equality of opportunity, and foster good relations. Nothing in this interactive flowchart should be interpreted in a way that would be inconsistent with compliance with those duties.
Commissioners and providers have a responsibility to promote an environmentally sustainable health and care system and should assess and reduce the environmental impact of implementing NICE recommendations wherever possible.

Supporting information

For the purpose of these recommendations a learning disability is defined as meeting 3 core criteria:
  • lower intellectual ability (usually an IQ of less than 70)
  • significant impairment of social or adaptive functioning
  • onset in childhood.
A person's learning disability may be mild, moderate, severe or profound in severity. Learning disabilities are different from specific learning difficulties such as dyslexia, which do not affect intellectual ability. A specific age limit is not used to define older people because adults with learning disabilities typically experience age-related difficulties at different ages, and at a younger age than the general population. This is reflected in the guideline title 'people growing older with learning disabilities'. Within the recommendations, this long form is used at the beginning of each section but in subsequent recommendations 'people' or 'people with learning disabilities' is used as a short hand. In all cases, the intended population is 'people growing older with learning disabilities'.

Glossary

an NHS initiative for adults and young people aged 14 and over with learning disabilities to provide health support and help identify health conditions that could otherwise go undetected
include methods of communication to supplement or replace speech or writing for people who need support to understand or express language
the tendency to attribute all behavioural, emotional, physical and social issues to a person's learning disability or a pre-existing condition while overlooking the possibility that they could be symptoms of other conditions or difficulties – an example would be attributing challenging behaviour to a learning disability when it could be a reaction to abdominal pain, which in turn might be symptomatic of a physical health problem
the tendency to attribute all behavioural, emotional, physical and social issues to a person's learning disability while overlooking the possibility that they could be symptoms of other conditions or difficulties – an example would be attributing challenging behaviour to a learning disability when it could be a reaction to abdominal pain, which in turn might be symptomatic of cancer
includes people who are related to the person with a learning disability and anyone else who helps to provide informal support, for example friends; it does not cover staff who are paid to provide care or support
includes people who are related to the person with a learning disability and anyone else who helps to provide informal support, for example friends; it does not cover staff who are paid to provide care or support
a personal plan for people with learning disabilities about how to stay healthy; it should detail what help and support they need to look after their health – this might include support to manage physical or mental health conditions, or actions in relation to lifestyle issues such as diet and exercise
a hospital passport is designed to give hospital staff useful information that is not limited to illness and health; for example, it could include details about what the person likes and dislikes, in terms of physical contact or food and drink – the idea is to help hospital staff understand how to make the person feel comfortable
Lasting power of attorney is a legal document that lets someone appoint 1 or more people to make decisions on their behalf, should they be unable to, and that can be made in relation to health and welfare, and property and financial affairs.
in these recommendations, 'practitioner' is used to mean a health or social care practitioner who provides care and support for older people with learning disabilities
in these recommendations, 'practitioner' is used to mean a health or social care practitioner who provides care and support for older people with learning disabilities
all the people who provide emotional and practical help to a person with a learning disability, which could include their family (including siblings), friends, carers, advocates, non-family members living with the person in supported housing and members of the person's religious community
all the people who provide emotional and practical help to a person with a learning disability, which could include their family (including siblings), friends, carers, advocates, non-family members living with the person in supported housing and members of the person's religious community

Paths in this pathway

Pathway created: April 2018 Last updated: May 2018

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