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Wednesday 19 December 2018
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Growing Older with Learning Disabilities

More people with learning disabilities are growing older, which is great news! This portal is here to provide you with information, toolkits, resources, guidance and more to help you best support those in your care who are growing older.



Active Lives

Ageing Well with Learning Disabilities: John, Inclusive Films, This film is a real-life story about John, a person who is blind and has a learning disability. John leads an active and rewarding life including sport, music and advocacy for people with learning disabilities. Watch the film here.


Dementia Support

Ann Has Dementia, Beyond Words, 2013 - Beyond Words has produced a book to help explain dementia and how a person with dementia can be supported to someone with a learning disability through pictures. You can buy a copy on their website.

Communication and People with Down’s Syndrome and Dementia, Surrey and Borders Partnership NHS Foundation Trust - This resource explores different types of communication, how dementia impacts communication and what you can do to help. Download the PDF here.

Dementia and People with Intellectual Disabilities, The British Psychological Society, 2015, This resource provides guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities who develop dementia. It is for those working in clinical and social care and aims to improve quality of life for people with a learning disability who develop dementia. Download the PDF here.
 

Developing and piloting the QOMID – quality outcome measure for individuals with intellectual disabilities and dementia, Karen Dodd, Alick Bush and Alexandra Livesey, 2015, This research article introduces the QOMID, how it was developed and its practical implications. Instructions on how to use the QOMID can be downloaded here, and the QOMID score sheet can be downloaded here. Download the research article here.

Downs Syndrome and Epilepsy, Surrey and Borders Partnership NHS Foundation Trust - 'Individuals with Down’s syndrome who develop Alzheimer’s dementia have epilepsy much more often than individuals who don’t have Alzheimer’s dementia' - this resource covers different types of seizures, diagnosis and treatment. Download the PDF here

Early Signs of Dementia in People with Down’s Syndrome – checklist, Surrey and Borders Partnership NHS Foundation Trust - this resource will help you identify the early signs of dementia and Alzheimer's in people with Down's Syndrome. Download the PDF here

Environmental Guidance Checklist, Surrey and Borders Partnership NHS Foundation Trust - this checklist will help you identify the environmental changes that may be required for the person you are supporting who has dementia and down's syndrome to enjoy a better quality of life in their home. Download the PDF here. 

Hidden in Plain Sight – Dementia and Learning Disability, Mental Health Foundation and Foundation for People with Learning Disabilities, 2018 -  This document is an attempt to work with policy makers and services to highlight the million+ people with learning disabilities who seem invisible in dementia policy, where their needs are barely mentioned. This document seeks to ensure people with learning disabilities have their needs clearly recognised and that they are "provided with appropriate and targeted support as they age and if they develop Dementia." Download the PDF here.

Learning disabilities and dementia, Alzheimer's Society, Alzheimer's Society have an online learning resource covering why someone with a learning disability is more likely to develop dementia, and presents suggestions about how they can live well with the condition. Access the webpage here.

MacIntyre Memory Cafes - MacIntyre Charity runs memory cafes for people who have learning disabilities and dementia, their carers, family and friends, and anyone who wants to find out more. They are relaxed, sociable events. Currently memory cafes are held in Chesterfield, Flitwick (Bedfordshire), Milton Keynes and Warrington (as of Dec 2018). Find out more here.

MacIntyre Dementia Project - MacIntyre have been given funding to create a range of learning and multi-media information resources to improve the support and care for people with learning disabilities who have dementia or are at risk of developing dementia. Find out more about the project and access real-life stories here.

Nutrition and People with Learning Disabilities and Dementia, Surrey and Borders Partnership NHS Foundation Trust - This resource provides information about good nutrition and supporting someone to eat well. Download the PDF here.

Physiotherapy and People with Down’s Syndrome and Dementia, Surrey and Borders Partnership NHS Foundation Trust - this resource provides information on what physical changes may take place when someone with downs syndrome develops dementia and advises how physiotherapy might help manage these changes. Download the PDF here.

Quality Outcome Measure for Individuals with Dementia (QOMID) Instruction Booklet, Karen Dodd and Alick Bush, 2013, the QOMID has been designed to help caregivers measure the quality outcomes for any person with dementia and identify areas where quality can be and needs to be improved. Download the PDF here.

Quality Outcome Measure for Individuals with Learning Disabilities and Dementia (scoresheet), Karen Dodd and Alick Bush, 2013 - More information about what the QOMID is can be found here and here. This scoresheet is to be used alongside the resources to evaluate quality outcomes for people with dementia. Download the scoresheet here.

Reasonable Anger and Dementia in People with Learning DisabilitiesSurrey and Borders Partnership NHS Foundation Trust - The world can be harder to understand when we develop dementia, and sometimes this can provoke reactions of anger and frustration. This resource provides guidance regarding what may provoke these reactions and what can be done to prevent them. Download the PDF here. 

Reasonable Anxiety and Dementia in People with Learning DisabilitiesSurrey and Borders Partnership NHS Foundation Trust - When someone develops dementia, they may become anxious because it's difficult for information to be transferred from their short-term to long-term memory. This resource provides guidance on how anxiety may manifest itself in the different stages of dementia. Download the PDF here. 

Signs of DementiaSurrey and Borders Partnership NHS Foundation Trust - some early signs of Dementia are also associated with other conditions. This resource can help you discern between conditions and advises on next steps to take in providing the best support and getting the correct diagnosis. Download the PDF here. 

Supporting Friends of People with Learning Disabilities and DementiaSurrey and Borders Partnership NHS Foundation Trust - It can be hard for people to see there friend or family member deteriorate with conditions such as dementia. This leaflet introduces resources and important things to consider in supporting people whose loved one has been diagnosed with dementia. Download the PDF here.

The Progression of Dementia in People with Down’s SyndromeSurrey and Borders Partnership NHS Foundation Trust- this resource provides information about the different stages of dementia in people with down's syndrome. Download the PDF here.   

Thinking about Dementia: Important points to rememberSurrey and Borders Partnership NHS Foundation Trust- this poster introduces the philosophy of care for people who have developed dementia, specifically those who have down's syndrome. Download the poster here

Understanding and Caring for People with Learning Disabilities and DementiaSurrey and Borders Partnership NHS Foundation Trust- this resource introduces what dementia is in terms of its effects on a person's everyday life, introduces the philosophy of care and how to put it into practice. Download the PDF here. 

Wellbeing for Life: Signs and Symptoms of Dementia, MacIntyre,2018, This resource explains the signs and symptoms of dementia and how they might manifest in someone with a learning disability. It also covers other conditions that can sometimes be confused with dementia and best practice for spotting the signs and using assessment tools for people with down's syndrome. Download the PDF here

Wellbeing for Life: Treatments, MacIntyre,2018, This resource covers medical and non-medical treatments that can be used in supporting someone with dementia and Alzheimer's. It also provides guidance in understanding how to support someone to make their own decisions about treatments. Download the PDF here.

Wellbeing for Life: Validation and Reality Orientation, MacIntyre,2018, This resource introduces what validation and reality orientation are, when to use these methods and weigh up the benefits of using either validation or reality orientation. Download the PDF here.


End of Life

Talking End of Life…with people with intellectual disability (TEL), The University of Sydney, Western Sydney University, HammondCare, Flinders University, Unisson Disability and CareSearch, this resource is a free online toolkit intended to help staff and caregivers teach people with learning disabilities about end of life. Find out more and access the toolkit here.

PCPLD Network, this network aims "to raise awareness of the palliative care needs of people with learning disabilities, to share and promote ‘best practice’ and to enhance collaboration between all services providers, carers and people with a learning disability" - find out more here.

We're Living Well but Dying Matters, Dying Matters, This film has been produced to  highlight the importance of including people with learning difficulties in discussions around death, dying and bereavement, and assists in training in how to make conversations accessible. Find out more and watch the film here. 


Frailty 

Why People FallSurrey and Borders Partnership NHS Foundation Trust - this resource introduces reasons and examples about why people may fall. This should help you understand reasons for a person's fall and take action to prevent future falls. Download the PDF here.


Improving Quality of Life

Evaluation Toolkit for Providers, Association for Real Change and Foundation for People with Learning Disabilities, 2014 - this resource is an assessment tool and action plan for organisations to improve the quality of life for people with learning disabilities as they grow older. The resourceImproving the quality of life for people with learning disabilities as they grow older goes alongside this toolkit. Download the Evaluation Toolkit here.

Improving the quality of life for people with learning disabilities as they grow older: A Challenge for Providers, Association for Real Change, 2013- this resource aims to show care providers what needs to be done to impact real change in improving quality of life for people with a learning disability as they grow older. It is a guidance document aiming to help care providers put research into practice. Download the PDF here.  

Widening choices for older people with high support needs – lessons from the Joseph Rowntree Foundation funded research, NDTi and Community Catalysts, Materials for a half-day workshop have been compiled on the NDTi website, which provide a framework for local discussion and action planning. Its focus is on widening the choices for older people by increasing the availability of models and arrangements that are based on positive mutual relationships and older people’s contributions. Find out more and access the materials here. 


Learning Disabilities Mortality Review 

Learning Disabilities Mortality Review (LeDeR) Programme, Norah Fry - this concise resource explains what the LeDeR is and why it was put in place. Download the PDF here.

LeDeR Programme annual report: 2016-2017, University of Bristol and NHS England - This is the 2016-17 report reviewing the mortality of people with learning disabilities. Download the report here. 

Reducing premature mortality in people with Learning Disabilities, Learning Disabilities Observatory and NHS England - This resource explores effective interventions and reasonable adjustments that can be put in place to reduce premature mortality. Download the PDF here.

The Government response to the Learning Disabilities Mortality Review (LeDeR) Programme: Second Annual Report, Department of Health and Social Care and NHS England - The Learning Disabilities Mortality Review (LeDeR) programme was established to support local areas across England to review the deaths of people with a learning disability, to draw out learning from those deaths and to put that learning into practice. This is the government's response to the LeDeR programme’s second annual report. Read the response here.

 

Planning for the Future

Care and support of people growing older with learning disabilitiesNICE, 2018, This resource provides guidance regarding the identification of changing needs, planning for the future, and delivering services including health, social care and housing. It aims to support people to access the services they need as they get older. Find out more and access the guidance here.

Decisions to make, steps to take, Sense, this resource provides guidance to planning long-term  care and support for disabled adults and their families. It covers topics such as housing, finance, care and rights. Download the PDF here. 

Supporting older people with learning disabilities, BILD and NDTi, 2014, This toolkit has been produced by BILD in partnership with NDTi. It is part of the BILD Ageing Well project that aims to promote a better understanding of the lives and needs of older people with a learning disability. This toolkit is for health and social care commissioners and aims to provide an easy reference point for local areas, along with practical ideas to improve practice. Download the PDF here.

When I’m Gone, Sense - Many supported families worry about what will happen to their loved one when they are gone.'The following report explores families’ fears for the future, the barriers to making long-term plans for housing, care and lifestyle, and outlines the changes needed to improve the situation.' Download the PDF here.

 

 



 

Building a better understanding of the lives and needs of older people with a learning disability