Overall, people with learning disabilities share the same age related physical and psychological changes as other older people. With some of these changes come age related health risks and it is important that all older people have access to high quality public health and medical services.
People with learning disabilities are 2.5 times more likely to have health problems than other people but are often poorly served and discriminated by health services (Department of Health 2001; Emerson and Baines 2010; Mencap 2012). Because of their earlier life experiences adults with learning disabilities embark on the ageing process from a position of vulnerability rather than strength as they are often already in poor health (Bigby 2004, 2010).
As a result of unhealthy lifestyles throughout their lives, older people with learning disabilities are more likely to experience lower levels of fitness, unhealthy diets, and be less mobile leading to greater risk of obesity and age related diseases such as diabetes, hypertension, heart disease, stroke, arthritis and respiratory disease (Emerson and Baines 2010; Royal College of Nursing 2011).
Some people with learning disabilities have a specific genetic makeup which carries higher risks as they age. People with Fragile X syndrome have an increased risk of musculoskeletal disorder; people with Prader Willi syndrome an increased risk of diabetes, cardiovascular disease and obesity (Bigby 2004). People with Down syndrome show patterns of premature ageing; they are at high risk of early onset Alzheimer’s disease, with a one in four chance of developing the disease 40 years earlier than the rest of the population as well as facing a range of other health related risks (Holland et al 1998).
Research shows that psychiatric conditions increase with older age though it is less likely to be treated (ELSA 2002). Older people with learning disabilities have a higher risk of psychiatric disorder than their younger peers, which is two to four times more common than for other older people (Bigby 2004, 2010 and Mental Health Foundation accessed 2012).
Davidson, W, Prasher, V and Janicki, M (eds) (2003) Mental Health, Intellectual Disabilities and the Ageing Process. Oxford: Blackwell Publishing
Haveman, MJ, Heller, T, Lee, LA, Maaskant, MA, Shooshtari, S and Strydom, A (2009) Report on the State of Science on Health Risks and Ageing in People with Intellectual Disabilities. IASSID Special Interest Research Group on Ageing and Intellectual Disabilities/Faculty Rehabilitation Sciences, University of Dortmund www.iassid.org/sirgs/aging
A Step by Step Guide for GP Practices: Annual Health Checks for People with Disabilities www.rcgp.org.uk
Moss, P et al (2015) Self and informant reports of mental health difficulties among adults with autism. Findings from a long-term follow-up study Autism, published online 26 May 2015
Northway, R (2015) Meeting the health needs of older people with learning disabilities: the challenge for nurses. BMJ Blogs: http://bit.ly/29TFdNK
Prasher, V and Prasher, A (2014) The Essential Guide to Health Care for Adults with Down Syndrome. Birmingham: BILD
Royal College of Nursing (2007) Meeting the Health Needs of People with Learning Disabilities. RCN Direct www.rcn.org.uk/direct
A very comprehensive website designed for people with learning disabilities including:
- Useful things for your health care
- Health videos
- Food and exercise
- Health leaflets
Decision aid and app for smartphone to help guide individuals and carers through the process of making advance care decisions.
GOLD (Growing older with learning disabilities) in Birmingham have produced a series of leaflets:
The NHS has also produced a lot of easy read information including:
- Free NHS Health Checker. Easy read. How to avoid heart disease, stroke, diabetes and kidney disease.
Royal College of Psychiatrists
Easy read medication and general information leaflets regarding mental health and learning disabilities for printing. www.rcpsych.ac.uk/mentalhealthinfoforall/problems/learningdisabilities.aspx
Easy read health leaflets
University of Birmingham
Easy read leaflets about medication for individuals with learning disabilities. Audio recordings of the medications are also available. www.ld-medication.bham.ac.uk/medical.shtml
Easy read eye care information and leaflets for printing. Information for carers and supporters to locate a local optometrist. www.seeability.org/myeyecare
Sense (2011) Fill in the Gaps - A Toolkit for Professionals in England working with Older Deafblind People. http://bit.ly/1768No1
Speakup Self Advocacy Organisation
Going into hospital.
Bellyache: about gastrointestinal cancer
Diabetes – Living a healthier Life
Organisations and web links
Action on Elder Abuse www.elderabuse.org.uk
Action on Hearing Loss (previously RNID) www.actiononhearingloss.org.uk
Age UK for top tips for staying healthy in later life www.ageuk.org.uk Downs Syndrome Association www.downs-syndrome.org.uk
St Georges Medical School, Understanding intellectual disabilities and health. www.intellectualdisability.info
Improving Health and Lives (for people with learning disabilities) IHAL www.improvinghealthandlives.org.uk
IASSID, International Association for the Scientific Study of Intellectual Disabilities www.iassid.org/sirgs/aging
RNIB supporting blind and partially sighted people www.rnib.org.uk
Sense for deafblind people www.sense.org.uk
Real life stories
Residential support workers meeting the health needs of older people with learning disabilities: an exploration of their developmental and support needs
There is a growing body of evidence of the greater health needs of people with learning disabilities including older people. However there has been little research on the implications of this for social care providers in terms of the skills and knowledge of support staff. The study aims to explore the experiences of residential support workers regarding meeting the health needs of older people with learning disabilities.
Some support workers have no healthcare experience yet find themselves supporting a tenant who suddenly has complex health needs. The pivotal role they play in identifying and meeting the health care needs of older tenants needs to be better understood to ensure that they are adequately prepared for and supported in this role hence the need for this research.
How the study will be conducted
This is an 18 month all Wales research study which has received funding from the Welsh Government’s National Institute for Social Care and Health Research (NISCHR).
Participants are recruited from third sector organisations providing housing and/or residential support to older people with learning disabilities within Wales. Also groups of older people with learning disabilities will be consulted throughout the research process.
The study will initially involve semi-structured interviews with house managers from the third sector organisations in South Wales. These explore experiences of supporting older people with learning disabilities who develop significant health problems. Themes identified at this stage will inform the development of the Stage 2 questionnaire. This will be piloted outside of Wales and then circulated to 1,500 support workers and house managers in Wales.
Findings of the overall project will be disseminated via a project report, the project’s steering group, web based information, papers submitted to professional and academic journals and conferences.
The research is conducted at the Unit for the Development in Intellectual Disabilities at the University of South Wales by Professor Ruth Northway, Dr Robert Jenkins and Dr Daniella Holland.
Dr Robert Jenkins
Dr Daniella Holland firstname.lastname@example.org
The Team around Tom
Eden Futures, www.edenfutures.org are recent winners of the Supporting Older People with Learning Disabilities Award at the National Learning Disabilities Awards 2014 for their work in relation to the 'Team around Tom'. Below are details about how the staff from Eden Future have worked to support Tom in his own home.
One of our service users ‘Tom’ has received support from Eden Futures for a number of years. At first he led a very independent life and received minimal support from his staff team. As he has got older like many people he started to experience health problems, including a Parkinson diagnosis, and he has been very concerned about the possibility of being placed in a nursing home.
He owns his own house and has lived there for many years, at first with his Mother and, after she passed away, by himself, this is where he wishes to live.
His support team have had to earn the confidence of others, in supporting Tom with his increased needs, as many external professionals involved in his care have at times thought it best for Tom to go into nursing care.
To meet his increasing health needs they have under gone additional training to ensure that they can fully support him. Everyone in the team has approached this with a can do attitude inspired by Tom and his desire to stay at home.
Personal care is something that Tom could previously do for himself but now his staff do this for him, they still regard him in the same light as when he was more able and treat him with the upmost respect.
The team know Tom so well that they are very well tuned into his wellbeing and spot early signs of infection minimising the need for medical attention. Their timely intervention has meant that they have been able to get on top of his medical issues and now he is getting his quality of life back; he has always led an active life in his local community and is now able to get out again.
Part of their success in supporting Tom in his own home is due to their openness and willingness to work with the external professionals involved in his care, it is a real partnership. New communication systems have been put in place to allow for the increased evidence collecting and monitoring required. At times there have been significant changes at short notice to his support rota but the whole team has pulled together for him and ensure that he gets the required support.
External professionals find it incredible that he hasn’t had to go into nursing care. Tom is happy to be at home surrounded by his possessions and memories; he leads and shapes his care, it’s very much his house and the team listen to him.
For more information please contact Ruth Stallwood at Ruth.Stallwood@edenfutures.org
Pictured: Eden Future's Team around Tom receiving their award at the National Learning Disabilities Awards