All people with a learning disability are at greater risk of developing dementia as they get older compared to the general population (Cooper 1997) (Alzheimer’s Society 2012).
The British Psychological Society (2009) Dementia and People with Learning Disabilities: Guidance on Assessment Diagnosis, Treatment and Support of People with Learning Disabilities who Develop Dementia. Leicester: The British Psychological Society
Dementia G8 Summit
Department of Health, 2014
Dodd, K and Bush, A (2013) The Quality Outcome Measure for Individuals with Dementia (QOMID)
Holland, T (2006) Ageing and its consequences for people with Down's syndrome Understanding Intellectual Disability and Health http://bit.ly/15c36UL
Holland, AJ, Hon, J, Huppert, FA, Stevens, F and Watson, P (1998) Population-based study of the prevalence and presentation of dementia in adults with Down’s Syndrome. British Journal of Psychiatry, Vol. 172, pp. 493–498
Kerr, D (2007) Understanding Learning Disability and Dementia: Developing Effective Interventions. London: Jessica Kingsley Publishers
Kerr, D, Cunningham C, and Wilkinson, H (2006) Responding to the Pain Experiences of People with a Learning Difficulty and Dementia. Joseph Rowntree Fund www.jrf.org.uk
NICE standards for dementia care
SCIE's Dementia Gateway
Strydom, A, Lee, LA, Jokinen, N, Shooshtari, S, Raykar, V, Torr, J, Tsiouris JA, Courtenay, K, Bass, N, Sinnema, M and Maaskant, MA (2009) Report on the State of Science on Dementia in People with Intellectual Disabilities. IASSID Special Interest Research Group on Ageing and Intellectual Disabilities
The Alzheimer's Society
Learning Disabilities and Dementia factsheet http://bit.ly/2wko5JY
The Alzheimer’s Society
This website provides details about a wide range of assistive technologies that are suitable for people with dementia but that could also be of potential use for older or frailer people with a learning disability http://bit.ly/1dw66yZ
Information about assistive technology for people with dementia www.atdementia.org.uk
Blackman, N and Brooks, M in collaboration with the GOLD group (2008) Dementia and People with Learning Disabilities: Valuing Relationships. Training pack (including two DVDs made by the GOLD group) available from Respond www.respond.org.uk/shop
Dodd, K, Turk, V and Christmas, M (2009) Down’s Syndrome and Dementia: A Resource for Carers and Support Staff. Second edition. Birmingham: BILD
Dodd, K, Turk, V and Christmas, M (2005) About dementia series. Birmingham: BILD
Dementia: Down’s Syndrome and Epilepsy, Surrey and Borders NHS Foundation Trust. Download PDF here
Dementia: Down’s Syndrome and Epilepsy - The Early Signs, Surrey and Borders NHS Foundation Trust. Download PDF here
Dementia: Down’s Syndrome and Epilepsy - The Early Signs Checklist, Surrey and Borders NHS Foundation Trust. Download PDF here
Dementia: Down’s Syndrome and Epilepsy - Environmental Guidance Checklist, Surrey and Borders NHS Foundation Trust. Download PDF here
Dementia easy read factsheets produced by Alzheimer's Society and BILD. http://bit.ly/1zaieQm
Dementia and People with Intellectual Disabilities,The British Psychological Society, 2015, Download PDF here
Dementia videos on Social Care TV. Social Care Institute for Excellence http://bit.ly/12UIR9Y
What is Dementia? (a book for people with learning disabilities) Downs Syndrome Scotland www.dsscotland.org.uk
Environmental changes to support people with learning disabilities and dementia. Aldingbourne Trust. Download article
Hollins, S, Blackman, N and Eley, R (2012) Ann has Dementia.
London: Books Beyond Words
The House of Memories. Liverpool Museums
Learning (intellectual) disability and dementia. Website developed by Karen Watchman www.learningdisabilityanddementia.org
Living with a learning disability and young onset dementia by Beth Britton on Young Dementia UK website. http://bit.ly/1J2xWR4
MacIntyre (2011) Hot Tips for Supporting People with a Learning Disability and Dementia. Milton Keynes: MacIntyre http://bit.ly/2x9ctan
Mengoni, S (2015) Trajectory of dementia: is it different for people with Down syndrome? The Learning Disabilities Elf http://bit.ly/1R2SJZQ
Nutrition and People with Learning Disabilities and Dementia, Surrey and Borders NHS Foundation Trust. Download PDF here
Physiotherapy and People with Down’s Syndrome and Dementia, Surrey and Borders NHS Foundation Trust. Download PDF here
Quality Outcome Measure for Individuals with Dementia (QOMID), Karen Dodd & Alick Bush (2013), Download PDF here
QOMID - Developing and piloting the QOMID – quality outcome measure for individuals with intellectual disabilities and dementia, Karen Dodd, Alick Bush and Alexandra Livesey (2015). Download article here
Quality Outcome Measure for Individuals with Dementia (QOMID) - Scoring Sheet, Karen Dodd and Alick Bush (2013). Download scoresheet here
Rate of dementia doubles among over 40s with Down Syndrome. (2014) RTE News
Reasonable Anger and Dementia in People with Learning Disabilities, Surrey and Borders NHS Foundation Trust. Download PDF here
Reasonable Anxiety and Dementia in People with Learning Disabilities, Surrey and Borders NHS Foundation Trust. Download PDF here
Supporting Friends of People with Learning Disabilities and Dementia, Surrey and Borders NHS Foundation Trust. Download PDF here
The Progression of Dementia in People with Down’s Syndrome, Surrey and Borders NHS Foundation Trust. Download PDF here
Thinking about Dementia: Important Points to Remember, Surrey and Borders NHS Trust.Download Poster here
Understanding and Caring for People with Learning Disabilities and Dementia, Surrey and Borders NHS Trust. Download PDF here
Watchman, K (ed) (2014) Intellectual Disability and Dementia: research into practice (Kindle edition)
Watchman, K, Kerr, D and Wilkinson, H (2010) Supporting Derek: A Practice Development Guide to Support Staff Working with People with a Learning Difficulty and Dementia. York: Joseph Rowntree Foundation www.jrf.org.uk
Why People Fall, Surrey and Borders NHS Foundation Trust. Download PDF here
Organisations and web links
Alzheimer’s Society www.alzheimers.org.uk
Dementia UK www.dementiauk.org
Dementia Services and Development Centre, University of Stirling www.dementia.stir.ac.uk The University of Edinburgh
offers a short, postgraduate online course: Critical Issues in Intellectual Disability and Dementia
Real life stories
MacIntyre - Special Interest Dementia Group
"It became apparent a couple of years ago that we were having increasing numbers of people either diagnosed as having or at risk of having dementia. With an ageing population this was inevitable but the people affected were supported in diverse locations by teams of staff who found themselves suddenly feeling de-skilled and unsure.
So we issued an open invitation across the whole of our adult services for anyone interested to come along to a one day event where we would not only explore the issues and challenges but also share success stories and solutions. The event was well attended, over 30 people came along and it was so successful that we decided to continue – this was the beginning of our “Dementia Special Interest Group”.
Membership is open to anyone and is as you would expect very fluid as people and services opt in or out depending on their current situation. The group is facilitated by myself, Amanda Wright (a first line manager at our Vale View nursing service who has previously studied for a qualification in this area) and also supported by two of our specialist managers interested in facilitation skills, health and behaviour support. There is a group email address and people will email around asking if anyone has come across a particular issue. They will also share any local resources they come across and feel are useful and if anyone attends external training we ensure they have a slot at the next workshop to share any learning or best practice.
To date, the group has tested and approved use of the Alzheimer’s Society e-learning module which is now available for any staff member on request via our on-line learning system. They have created and piloted a bespoke training package intended to build on this theoretical knowledge by supporting staff teams to translate it into person centred best practice when supporting a named individual.
They have also put together a top tips information booklet from shared stories and their own trial and error experiences. They have also designed easy read guides to explain to a person with a learning disability who may have just received such a diagnosis and also one to explain to their friends what is happening and why. All of the tools and resources that the group creates are available for anyone in MacIntyre to download and use via our on line learning resource.
The group appears to work because people now know they are not the only ones facing this situation and while formal training is invaluable and this is not intended to ever replace that, it may not always provide the right information at the right time and so the group’s existence means people can ask the questions they need to when they need to and share/learn from others. We said from the outset the group would only exist for as long as it served a purpose and was useful – it has been going for over two years now albeit it with many new faces."
Our thanks to MacIntyre for this real life case study, names have been changed to respect people’s privacy.
Birmingham Community NHS Trust
The Birmingham Growing Older with Learning Disabilities and Dementia (GOLDD) is a multiagency steering group that ensures that different services across the city provide excellent person centred support that promotes independence, dignity and respect of older people with learning disabilities. It reports directly to the Birmingham Learning Disabilities Partnership Board.
The steering group includes older people with a learning disability and they have developed a wide range of easily accessible (easy word and picture) information booklets for services users. These can be found at www.bild.org.uk/information/ageingwell/health/
An eLearning training course on ageing and dementia for carers and staff across all care sectors has been developed together with a specialist day centre for older adults with dementia.
The team have designed an environmental assessment tool to promote dementia enabled environments for service users, delivered training in age related issues to numerous care providers across the range of care sectors as well as clinical training courses. They have also delivered training to people with a learning disability that promote healthy ageing and ageing well initiatives.
The team have also ensured that the needs of older people with learning disabilities are positively highlighted in service strategies and city-wide guidance as well as driving services to promote ageing in people with learning disabilities in positive and healthy ways.
The group has been a triumph of multiagency working across Birmingham for the past decade and its acronym (GOLDD) has become synonymous with excellent person centred support and skill in promoting the needs of older people with learning disabilities in Birmingham and beyond.
For more information about the GOLDD work in Birmingham contact:
Dr Sunny Kalsy-Lillico
Consultant Clinical Psychologist
Birmingham Community NHS Trust
People with both learning disabilities and dementia: Exploring subjective experiences, holistic care and support
In recent times the life expectancy of people with learning disabilities and the proportion of the learning disability population who are now reaching older age have increased sharply; with figures estimating that the number of people aged above 60 years, between 2001 and 2021, will increase by 36% (Emerson and Hatton, 2008).
One consequence of this has been the increased presentation of dementia. Research has established an increased risk of developing dementia amongst the learning disability population (Cooper, 1997); this is especially the case for people with Down syndrome, where there is a known link with Alzheimer’s disease (Sinai, Chan and Strydom, 2014).
However, to date there is a limited field of research which is inclusive of people with both a learning disability and dementia, what is available largely focuses on epidemiological aspects; these do not tell us a great deal about what it means to live with dementia (Flick, 2009). To do this we need to explore the subjective experiences of people with dementia; something advocated by leading figures within the field such as Karen Watchman (2012; 2013). To date, only two studies have explicitly explored the subjective experiences of people with both a learning disability and dementia (Lloyd, Kalsy and Gatherer, 2007; Watchman, 2013).
This research aims to add to and further this limited area by: exploring the experiences and journeys of people with a learning disability living with dementia; exploring the experiences and journeys of family and professional carers; and critically exploring how dementia care pathways and the support systems in place influence their journey, experience of holistic care and support, and how this may be best utilised.
This research has adopted a Constructivist Grounded Theory (CGT) methodology; this entails a systematic approach to analysis which focuses on personal experience. Underpinned by a constructivist paradigm: holding a relativist ontology, which entails the existence of multiple realities influenced by context; and a subjectivist epistemology where the ‘knower and respondent co-create understandings’ (Denzin and Lincoln, 2005:p. 35), and its strong suitability to under-researched areas, CGT was an ideal methodology for the current research.
Four groups of participants will be recruited: people with both a learning disability and dementia; family and professional carers; and healthcare professions on a local NHS dementia care pathway (DCP) team. Participants from the first three groups will take part in two in-depth semi-structured interviews each. Professionals from the DCP will take part in one interview each. Interviews will be flexible and individualised in order to be as inclusive as possible; this may mean adapting communication (Goodley, 1998; Watchman, 2012).
This may be particularity relevant for participants with both a learning disability and dementia, where levels of communication may vary, so it will be essential to ‘get to know’ the individual first; adapting the communication method and interview to their individual preferences and ability. This may mean including communication aiding tools such as cue cards, Makaton (Walker, 2000), or Talking Mats (Murphy, Gray, and Cox, 2007). Prior meetings will also help to build rapport with participants. NHS ethics have been approved, with interviews expected to take place early July 2014.
A key limitation of the learning disability and dementia evidence is the dearth of research exploring experiences of dementia, especially from the perspective of the person with a learning disability and family carers. Subsequently, little is known about the holistic support and care they receive, the role of support strategies and systems, and DCPs and how they influence their lives.
Insight from this research will provide a greater understanding of the experience of having dementia from the perspective of someone with a learning disability and from the perspective of carers. It will explore how this is reflected in people’s coping strategies, and how these and other support strategies and systems influence their experience of dementia.
Evidence on the use for DCPs will explain how they contribute to holistic care and support and clarify our understanding of how people experience dementia services and the role they play in providing holistic care it will also add to our understanding of the barriers that people with both a learning disability and dementia face. This research will have practical implications.
Dan Herron, Dr Helena Priest, Professor Sue Read. Keele University
For more information contact Dan Herron at firstname.lastname@example.org
Cooper, S A (1997) High prevalence of dementia among people with learning disabilities not attributable to Down’s syndrome. Psychological Medicine. 27, 609–616
Denzin, N and Lincoln, Y (2005) The Sage Handbook of Qualitative Research. Thousand Oaks: Sage Publications
Emerson, E and Hatton, C (2008) People with Learning Disabilities in England. Lancaster: Institute for Health Research, Lancaster University
Flick, U (2009) An Introduction to Qualitative Research. London: Sage Publications
Goodley, D (1998) Stories about writing stories. In P Clough and M. Burton (Eds) Articulating with Difficulty: Research voices in special education (pp.113-127). London: Paul Chapman
Lloyd, V, Kalsy, S, and Gatherer, A (2007) The subjective experience of individuals with Down syndrome living with dementia. Dementia: The International Journal of Social Research and Practice, 6(1), 63-88
Murphy, J, Gray, C M and Cox, S (2007) The use of talking mats as communication resource to improve communication and quality care for people with dementia. Journal of Housing, Care and Support, 10(3), 21-27
Sinai, A, Chan, T, and Strydom, A (2014) The epidemiology of dementia in people with intellectual disabilities. In K. Watchman (Ed) Intellectual Disability and Dementia: Research into practice (pp. 24-33). London: Jessica Kingsley Publisher
Walker, M (2000) Makaton development vocabulary project. In MVDP Foundation Workshop Module 1. [MVDP Foundation Workshop Module 1]. Surrey: Camberley
Watchman, K (2012) Reducing marginalisation in people with learning disability and dementia. Journal of Dementia Care, 20(5), 35-39
Watchman, K (2013) At a Crossroads in Care: The experience of individuals with Down syndrome and dementia. (Unpublished PhD). University of Edinburgh, Edinburgh