1. “Looking to the Future” Implications related to the use of restrictive practices for people with learning disabilities and dementia.
James Ridley
Senior Lecturer (Learning Disabilities)
Edge Hill University
and
Serena Jones
Community Learning Disability Nurse; Specialising in Dementia Care
Mersey care NHS Trust

2. Aims
Identify ‘restrictive practice’, understand the increasing implications for the rights of people with learning disabilities and dementia.
Using a human rights framework to understand the legal and ethical issues for practitioners / services.
Using a human rights based approach and tools to reduce the need for restrictive practice.

3. What is a “Learning Disability”.
A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;
A reduced ability to cope independently (impaired social functioning); which started before adulthood, with a lasting effect on development.
(Valuing People, 2001)
We are all aware of the definitions of learning disabilities, however the definition used within our service is based upon the Valuing People definition.
Learning disability includes the presence of:
A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with;
A reduced ability to cope independently (impaired social functioning); which started before adulthood, with a lasting effect on development.
(Valuing People, 2001)

4. Prevalence Comparison.
Talk about life expexticeny increase in age related illness and early onset
British Psychological Society, Royal College of Psychiatrists, 2009

5. Assessment difficulties
Whiteboard and handouts.
Difficulties in the assessment of dementia for people with learning disabilities;
Already have underlying cognitive deficits and impaired living skills.
Prone to health problems – mimic symptoms.
Lack of communication skills to report on symptoms experienced.
Carers change frequently – lack of detailed knowledge of changes in functioning
Generic assessments cannot be used due to their learning disability.
Therefore it is very difficult to identify any cognitive changes due to dementia, from a one off assessment e.g. “Mini Mental State”.
Janicki, Dalton, (1999)

6. “Diagnostic Overshadowing”
Both people with learning disabilities and people with mental health problems experience “diagnostic overshadowing”.
The presentation and course of dementia in people with more severe learning disabilities may initially be atypical and present with changes in behaviour and for this reason dementia may not be suspected.
(British Psychological Society, Royal College of Psychiatrists, 2009)
“Diagnostic Overshadowing”
Both people with learning disabilities and people with mental health problems experience ‘diagnostic overshadowing’, that is reports of physical ill health being viewed as part of the mental health problem or learning disability – and so not investigated or treated. This could mean that levels of ill health are even higher than our figures suggest.
Disability Rights Commission, 2006
People with learning disabilities and dementia especially those with severe learning disabilities may be supported to manage their behaviours rather than being offered support to manage their dementia journey. Because of the lack of typical dementia presentation the behaviour could be seen as the problem where as the real problem would be the person suffering dementia, therefore the behaviour “Overshadows” the person’s dementia.

7. What are the Behavioural and Psychological Symptoms of Dementia (BPSD).
Whiteboard.
BPSD includes agitation, anxiety, irritability and motor restlessness, often leading to behaviours such as wandering, pacing, aggression, shouting and night-time disturbances, psychosis, and, mood disorders.
Other symptoms include sexual disinhibition, eating problems and abnormal vocalizations (shouting, screaming and demanding attention, etc).
Ballard, O’Brien, James, Swann, (2003),
There is no evidence to advice that PWLD have a different pathways to dementia that the general population. Hence this discussion as the evidence in general population suggests that restrictive practice

8. Testad, Aasland, Aarsland (2005)
Management of BPSD.
“Restraint amongst the institutionalised elderly with dementia and problem behaviour is inevitable”
Testad, Aasland, Aarsland (2005)
“The use of restraint amongst institutionalised elderly with dementia and problem behaviour not only remains widespread, but also appears to be accepted as inevitable”

9. BPSD and Learning Disabilities
Challenging behaviour is an inevitable aspect of dementia,
(Stokes and Gouldie, 1990)
Challenging behaviour is not an inevitable consequence of the condition.
Kerr (2007)
People with a learning disability, can often present with behaviours that challenge carers and services, (Meyers and Evans, 1994).
Challenging behaviour amongst people with a learning disability is compounded when they develop dementia because there is a tendency to see challenging behaviour as an inevitable aspect of dementia, (Stokes and Gouldie, 1990)
It is crucial that staff and service providers recognise that challenging behaviour in people with dementia is not necessarily an inevitable consequence of the condition.
Kerr (2007)
These contradictory statements may reflect the increase in research that has been completed in relation to the understanding of people with learning disabilities and their dementia journey.

10. “RESTRAINT is a RESTRICTIVE PRACTICE”
“The intentional restriction of a person’s voluntary movement or behaviour”
Counsel and Care (2002).
The RCN document “Lets talk about restraint” states that the basic term of restricting movement or liberty may be to generalised; and that some nursing interventions can include these, e.g. plaster casts, or locking doors simply for security. However they also state that restraint should only be used as a “last resort”, when all other methods have been identified and discounted.
“RESTRAINT is a RESTRICTIVE PRACTICE”

11. Restraint is only permitted to; Prevent harm, Must be proportionate.
Mental Capacity Act, 2005
Section 6:
Restraint is only permitted to;
Prevent harm,
Must be proportionate.
Section 6 of the Act defines restraint as the use or threat of force where an incapacitated person resists, and any restriction of liberty or movement whether or not the person resists.
Restraint is only permitted if the person using it reasonably believes it is necessary to prevent harm to the incapacitated person, and if the restraint used is proportionate to the likelihood and seriousness of the harm.
Prevent Harm and Proportionate;
The use of bed rails and cot sides is primarily related to the prevention of falls in older people, (Rollins, 2006). The impact of a fall for an older person can be significantly debilitating, these issues can include recurrent fear of falling, loss of mobility, increase in dependenc, hypothermia, pressure related injury and infection.
Rollins (2006) the associated harmful risks of bedrails are that people can feel caged, jailed, embarrassed, and powerless therefore impacting on the autonomy of the individual. Tinetti (1992) stated that mechanical restraint was deemed to be an extrinsic factor in relation to fall related injuries and they have been found to increase the risks.

12. Forms of Restrictive Practice
Chemical
Mechanical
Physical
Psychological
(RCN, 2008)
Restrictive practice can take a variety of different forms;
Physical;
“Hand’s on Techniques”
Mechanical;
Baffle locks
cot sides, etc
Chemical;
Anti-psychotics
PRN medications
Over the counter medications
Psychological;
Telling people not to move,
Putting people in their night clothes during day light hours,
Removing walking aids

13. Risk Groups People who are difficult or threatening.
People who are non-conforming, therefore causing a management problem
People who are less physically or mentally able
CSCI (2007)
According to CSCI (Care Quality Commission) the three most likely groups of people to be restrained or have restrictive practices applied are;
People who are perceived as difficult or threatening.
People who cannot be persuaded in other ways to do what others wish them to do, or are non-conforming, therefore causing a management problem
People who are less physically or mentally able
CSCI (2007)
Based on the needs of people with learning disabilities and the common issues related to challenging behaviour such as “communication” we believe that an individual with a learning disability and dementia is 3x more likely to have restrictive practices applied.
Potentially harmful effects related to the use of restrictive practices.
Depression, Cognitive decline, Emotional isolation, Confusion, Agitation
Increased morbidity and mortality, Injury, Strangulation, Functional decline, Reduced appetite, Cardiac stress
Muscle wastage
Incontinence
Watson (2001)
However as previously discuss their may be additional effects that could be harmful to the individual, such as loss of trust in the carer as well as those previously mentioned like loss of autonomy, feeling caged, etc.
Specific risk factors for people with learning disabilities.
Orthopaedic deformities and consequent breathing disorders
Predisposition to epileptic seizures
Cardiac abnormalities
Obesity
Risk of fractures
Spinal instability (People with Down Syndrome)
Respiratory problems
Mental Health problems
Elevated pain thresholds
Anti-psychotic drugs use, (the possible side effects of which include a range of cardio-pulmonary complications).
Leadbetter (2002)
All of these risk areas may be enhanced by the fact that the person with learning disabilities and dementia is more likely to suffer from age related conditions earlier than the general population; and as we know these needs may not have been identified as there is a greater risk of a person with learning disabilities suffering from health inequalities.

14. Fairness Respect Equality Dignity Autonomy FREDA Principles Fairness
The human rights based approach is based upon the FREDA principles, these are;
Fairness
Respect
Equality
Dignity
Autonomy

15. Human Rights Based Approach.
“A human rights based approach offers one method for facilitating positive risk management”.
Whitehead, Greenhill, Carney, (2009)
Discuss the Aims
Potentially harmful effects related to the use of restrictive practices.
Depression, Cognitive decline, Emotional isolation, Confusion, Agitation
Increased morbidity and mortality, Injury, Strangulation, Functional decline, Reduced appetite, Cardiac stress
Muscle wastage
Incontinence
Watson (2001)
Key concepts such as proportionality and balancing the rights of the service user when considering positive risk management should be integral to whichever service a person works in.
Whitehead, Greenhill, Carney, (Print pending.)
However as previously discuss their may be additional effects that could be harmful to the individual, such as loss of trust in the carer as well as those previously mentioned like loss of autonomy, feeling caged, etc.
Specific risk factors for people with learning disabilities.
Orthopaedic deformities and consequent breathing disorders
Predisposition to epileptic seizures
Cardiac abnormalities
Obesity
Risk of fractures
Spinal instability (People with Down Syndrome)
Respiratory problems
Mental Health problems
Elevated pain thresholds
Anti-psychotic drugs use, (the possible side effects of which include a range of cardio-pulmonary complications).
Leadbetter (2002)
All of these risk areas may be enhanced by the fact that the person with learning disabilities and dementia is more likely to suffer from age related conditions earlier than the general population; and as we know these needs may not have been identified as there is a greater risk of a person with learning disabilities suffering from health inequalities.

16. Human Rights Risk Screen.
“Used as a prompt to question whether appropriate interventions are in place.”
Greenhill, Whitehead, Carney, (2009)
Also Known as the “Keeping Me Safe and Well” screen.
The risk screen looks at risk behaviours with a human rights perspective, identifying articles defined within the Human Rights Act that may be impacted by the risk behaviour.
The screen prompts the person completing the tool to question whether appropriate person centred interventions are in place.
(Greenhill, Whitehead, Carney, print pending)

17. Reducing Restrictive Practices.
Pain Management.
Environmental assessment.
Medication Reviews
Capacity assessments
Communication assessments.
Health Needs Assessment
Health Action Plans
“Life Stories”
“Person Centred Plans”
Behavioural Assessments
According to Gashmans and Milisen (2008) their should regardless remain a responsibility that the person be respected in terms of restraint, they state that the mentally incompetent person should be involved in the decision as much as possible, because the dementia process is gradual it does not necessarily mean that the person cannot make decisions about their care. The responsibility lies with the caregiver to offer the individual and those around the information necessary to rationalise the need for the use of restrictive practices.
We can do this by giving information, according to Caress (2003) a well informed individual will better manage their health and treatment, have better psychological outcomes, and have fewer exacerbations of their condition. However an area to be aware of in relation to this is that patients may find it difficult to articulate their information needs as discussed by (Bowles, 1996), and that there is evidence to suggest that professionals and patients can have different perceptions of the important issues, (Osman, et al, 2001).

18. Conclusion.
“If all you have in your tool box is a hammer, all the world looks like a nail.”
Abraham Maslow

19. Contact Details James Ridley Senior Lecturer (Learning Disabilities)
Edge Hill University
St Helens Road
Ormskirk
Lancashire
L39 4QP
Tel; ;
Serena Jones
Community Nurse
Olive Mount
Old Mill Lane
Wavertree
Liverpool
L15 8LW
Tel;

20. References
Ballard, C, O’Brien, J, James, I, Swann, A, (2003), Dementia; Management of the behavioural and psychological symptoms, Oxford University Press, Oxford.
Braun, J, Lipson, S, (1993), Toward a restraint free environment; reducing the use of physical and chemical restraints in long term and acute care settings, Health Profession Press, Sydney.
British Psychological Society, Royal College of Psychiatrists, (2009), Dementia and people with learning disabilities, BPS/RCP, London
Burnard, P, Chapman, C, (2005), Professional and ethical issues in nursing, Ballierre Tindall, Edinburgh.
Bowles, L, (1996), How much should patients be told about their medication, British Journal of Nursing, 5, 3, 157 – 164, Cited by; Caress, A, L, (2003), Giving information to patients, Nursing Standard, 17, 43, 47 – 54.
Care Quality Commission (nee Commission for Social Care Inspection), (2007), Rights, risks and restraints; An exploration into the use of restraint in the care of older people, CSCI, Newcastle Upon Tyne.
Caress, A, L, (2003), Giving information to patients, Nursing Standard, 17, 43,

21. References
Counsel and Care, (2002), Showing restraint; challenging the use of restraint in care homes, Counsel and Care UK, London.
Department of Health, (2001), Valuing People, DoH, London.
Disability Rights Commission, (2006), Equal Treatment; Closing the Gap, Disability Rights Commission, London
Home Office (2005), Mental Capacity Act (2005), HMSO, London.
House of Lords, House of Commons, Joint Committee on Human Rights, (2008), A life like any other? Human rights of adults with learning disabilities, Seventh Report, HMSO, London.
Gashmans, C, Milisen, K, (2006), Use of physical restraint in nursing homes; clinical ethical considerations, Journal of Medical Ethics, 32, 148 – 152
Great Britain. Human Rights Act 1998: Elizabeth ll. Chapter 42. (1998). London: The Stationery Office
Janicki, M, Dalton, A, (1999), Dementia, Aging, and Intellectual Disabilities: A Handbook, Routledge, New York.
Kerr, D, (2007), Understanding Learning Disability and Dementia, Jessica Kingsley, London.

22. References
Leadbetter, D, (2002), Good practice in physical intervention, In Allen, D, (ed), Ethical approaches to physical interventions, BILD, p
Osman, L, et al, (1994), Reducing hospital admission through computer supported education for asthma patients, British Medical Journal, 308, 6928, , Cited by; Caress, A, L, (2003), Giving information to patients, Nursing Standard, 17, 43, 47-54
Rollins, M, (2006), Safety issues surrounding the use of bedrails, Nursing Older People, 17, 10, 20 – 21.
Royal College of Nursing, (2008), Lets talk about restraint: Rights, Risks, and Responsibilities, RCN, London
Stokes, G, Gouldie, F, (1990), Working with dementia, Winslow Press, Bicester.
Testad, I, Aasland, A, M, Aarsland, D, (2005), The effect of staff training on the use of restraint in dementia: a single-blind randomised controlled trial, International Journal of Geriatric Psychiatry, 20,
Tinetti, M, et al, (1994), A multi-factorial intervention to reduce the likelihood of falling among elderly people living in the community, New England Medical Journal, 331, 13, 821 – 827, Cited by; Kelly, A, Dowling, M, (2004), Reducing the likelihood of falls in older people, Nursing Standard, 18, 49, 33 – 40

23. References
Watson, R, (2001), Restraint; its use and misuse in the care of older people, Nursing Older People, 13, 3,
Whitehead, R, Carney, G, Greenhill, B, (2009), Encouraging positive risk management; Supporting “A life like any other” using a Human Rights Based Approach, In, Logan, C, Whittington, R (eds), Self-harm and Violence: Best Practice in Managing Risk, print pending.
World Health Organisation, (1986), Dementia in later life; research and action; report of the WHO scientific group on senile dementia, WHO, Geneva, Cited by; Ballard, C, O’Brien, J, James, I, Swann, A, (2003), Dementia; Management of the behavioural and psychological symptoms, Oxford University Press, Oxford.

24. Useful Reading
Abbey, J., Piller, N., Bellis de, A., Esterman, A., Parker, D., Giles, L. & Lowcay, B. (2004) The Abbey pain scale: a 1-minute numerical indicator for people with end stage dementia. International Journal of Palliative Nursing, 10,
Deb S., Clarke D. & Unwin G. (2006) Using medication to manage behaviour problems among adults with a learning disability: Quick Reference Guide (QRG), University of Birmingham, MENCAP, The Royal College of Psychiatrists.
Department of Health (2008) End of Life Strategy; Promoting high quality care for all adults at the end of life. TSO (The Stationery Office).
Dodd, K., Kerr, D. & Fern, S. (2006) Down’s Syndrome and Dementia Workbook for Staff. Down’s Syndrome Association. Down’s Syndrome Association.
Dodd, K., Turk, V. & Christmas, M. (2002) Resource Pack for carers of adults with Down’s Syndrome and dementia. BILD Publications.
Evenhuis, H.M., Kengen, M.M.F., & Eurlings, H.A.L. (2007). Dementia Questionnaire for People with Learning Disabilities (DLD). UK adaptation. Harcourt Assessment.
Holland, A.J. (2004) Down’s Syndrome and Alzheimer’s Disease: A guide for Parents and Carers. Down’s Syndrome Association.

25. Useful reading.
Kerr, D. (1997) Down’s Syndrome and dementia: a practitioner’s guide. Venture Press.
Kerr, D. (2007) Understanding Learning Disability and Dementia: Developing Effective Interventions. Jessica Kingsley Publishers.
Kerr, D., Cunningham, C. & Wilkinson, H. (2006) Responding to the Pain Needs of People with a Learning Disability. York Publishing Services.
Prasher, V.P. (2005) Alzheimer’s Disease and Dementia in Down’s Syndrome and Intellectual Disabilities. Radcliffe Publishing.
Thomas, K. & Department of Health (2005) Gold Standards Framework. Department of Health.
Watchman, K. (2006) Keep Talking about dementia: Information for Siblings and professionals about Down’s Syndrome and dementia. Scottish Down’s Syndrome Association.

26. Useful websites www.BILD.org.uk www.cbf.org.uk