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Wednesday 20 November 2019
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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.



New Webinar Series Launched!

We look forward to hosting a series of webinars with a range of organisations and professionals specialising in the area of growing older with learning disabilities. This series, Growing Older Living Well, which will launch on October 16 2019, aims to help and equip you to work alongside, care for and support people with learning disabilities who are growing older. Our programme can be viewed below:

16 October 2019: Talking about end of life, Roger Stancliffe and Michele Wiese (University of Sydney) - Find out more and register your place here. Even if you can't make this time, we will send all registrants a recording.

18 December 2019: Growing older in a supported service – what can support staff do to make this a positive experience for everyone? Emma Killick (MacIntyre) - Find out more and register your place here. Even if you can't make this time, we will send all registrants a recording.

19 February 2020: Carers – When I’m gone, Sarah White (Sense)

15 April 2020: Person centred planning with people with learning disabilities who are growing older, Lindsey Allen (BIILD)

17 June 2020: TBC

19 August 2020End of life care, St Anne's Community Services

21 October 2020: Dementia in people with a learning disability, Dr. Karen Dodd (Surrey and Borders Partnership NHS Foundation Trust


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.

BILD's film about active ageing - BILD and Inclusive Films have produced an inspiring short film about people with a learning disability and their experience of ageing well. Discussion points can be used both with people with a learning disability and staff to think about active ageing.You can find suggested discussion questions to support work with people with learning disabilities about growing older here > 

'How old is 'older' for people with learning disabilities?' - Presentation by Pauline Heslop, Norah Fry Research Centre, Bristol, given at the Growing Older Conference 2019.


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 Action Alliance Resources, Dementia Action Alliance, Resources include webinars exploring Dementia and Learning Disabilities, a briefing document explaining the key challenges usually experienced by people with a learning disability and dementia, and also an overview of discussions and recommendations put forward from roundtable events. Find all the resources on their website here.

Dementia and Learning Disabilities: From Seldom Heard to Seen and Heard (roundtable notes)National Dementia Action Alliance (NDAA), 20 people came together on 8th June in London to discuss the key issues and actions to be taken around supporting people affected by dementia and a learning disability. Read the roundtable discussion notes here.

Dementia and Learning Disabilities: From Seldom Heard to Seen and Heard (recommendations)National Dementia Action Alliance (NDAA), 20 people came together on 8th June in London to discuss the key issues and actions to be taken around supporting people affected by dementia and a learning disability. Read the NSAA's one page of recommendations 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.

Living Well with Dementia, presentation by Karen Dodd, Surrey and Borders NHS Partnership NHS Trust, delivered at the Ageing Well Conference in 2019

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.

Meeting the Challenges of Dementia for People with Learning Disabilities, National Dementia Action Alliance (NDAA) - This briefing paper has been produced to launch the NDAA's campaign to improve care and support for people affected by dementia from seldom heard groups. Read the briefing paper 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

Delivering high quality end of life care for people who have a learning disability, NHS England 2017, This guidance document provide resources and tips for commissioners, service providers and health and social care staff providing, or delivering care to people with a learning disability at the end of their lives.View the guidance document here.

Dying Matter Awareness Week, Dying Matters, Every year in May, Dying Matters hosts an Awareness Week, which gives an unparalleled opportunity to place the importance of talking about dying, death and bereavement firmly on the national agenda. In 2019, the week ran from the 13th to the 19th of May under the theme 'Are We Ready?' Click here to access all the resources produced for the awareness week.

Improving End of Life Care for People with Intellectual and Developmental Disabilities: Resource Pack, Developed in partnership by Nottinghamshire Healthcare NHS Foundation Trust and Sherwood Forest Hospitals NHS Foundation Trust, This resource pack aims to takes steps to reduce the barriers faced by the patient group and support all involved in providing high quality and equitable care at end of an individual’s life. Access the resource pack here. 

It's going to happen, but what are we preparing for?' Death and end of life care for people with learning disabilities in care home settings, Associate Professor Stuart Todd, South Wales University. Presentation given at Growing Older Conference 2019.

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.

Talking About Growing Older and End of Life, Speak Easy N.O.W and Worcestershire People's Parliament, In this film, Worcestershire's People's Parliament for people with learning disabilities talk about how important it is to make plans and talk to your loved ones about Growing Older and End of Life. Watch it here.

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. 

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.


Health

Doing it My Way, St Anne's Community ServicesSt Anne’s Community Services have produced a package of materials to support people with learning disabilities, their families and support staff to recognise and manage health issues and enable them to plan for changing health needs. Access the range of resources here.

Improving access to mainstream health services for people with a learning disability, Surrey and Borders NHS Partnership Learning Disability Teams, This training video provides advice to general hospitals and GPs on how to make reasonable adjustments for people with a learning disability that will improve their access to mainstream health services. View the video here.

My Information and Advance Care Plan (Easier Read Version),Nottinghamshire Healthcare NHS Foundation Trust - this advance care plan is a written plan about what the person with learning disabilities wants, needs and would prefer to happen when needing care in life threatening and life limiting illness. It is to be filled in by both the person with learning disabilities and their support worker or carer. Access this care plan here.

My Pain Profile, Nottinghamshire Healthcare NHS Foundation Trust - Use this Pain Profile to work alongside the person you support to talk to them about their pain and techniques for managing pain, including medication. Access this care plan here.

Improving Quality of Life

Learning Disability: Care and Support of People Growing Older, NICE Quality Standard QS187. Find out more here.

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.  

Supporting people with learning disabilities to live longer, healthier lives, MacIntyreIn April 2018 NICE published their guideline on care and support of people growing older with learning disabilities. This provides evidence based recommendations to support practice. This webinar explores some of these recommendations, looking to bring them to life through examples and talking about how they may work in practice. Watch the webinar 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: 2018, University of Bristol and NHS England - This is the 2018 report reviewing the mortality of people with learning disabilities. You can download the report here. The Valuing People Alliance, of which BILD is part of, published their reaction to this report, which can be read here.

Webinar presentation about LeDeR's 2018 annual report,LeDeR, You can watch a video of Professor Pauline Heslop, the LeDeR programme lead, giving a webinar presentation about the key points in the 2018 LeDeR annual report. Watch the webinar 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.

The Valuing People Alliance Responds to the LeDeR Report: We are part of the Valuing People's Alliance which exists to champion the rights and wellbeing of people with learning disabilities. Find out more about the Valuing People Alliance here. Together we responded to the 2018-19 LeDeR report, which can be read 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. 

Person-Centred Future Planning, Social Care Institute for Excellence. This is a quick guide which aims to help practitioners to support older people with learning disabilities when they are planning for the future. Access the guide 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