Caring for a person with an intellectual disability.

Caring for patients who have an intellectual disability ( ID ) is one of the more ‘out of the comfort zone’ experiences for many nurses.

Even more so, for the person, who now finds themselves in strange, unfamiliar and often distressing surrounds.

Studies have shown that it typically takes 4 times longer to assess and manage patients with ID.

ID occurs during the developmental period, that is, from conception until around 18yrs. Specific ID syndromes include Down syndrome, Foetal alcohol syndrome, Fragile X syndrome, Prader-Will syndrome, Phenylketonuria, Neurofibromatosis and Congenital hypothyroidism.

It manifests with ‘sub-average intellectual functioning’, that is, an IQ lower than 75 and ‘adaptive functioning deficits’ (difficulty with communication, self-care, social skills, self direction, work capacity and learning ability).

Intellectual disability should not be confused with mental illness, acquired brain injury, dementia, Autism or specific learning disabilities.

People with ID often have multiple, complex chronic disorders, have a poor diet resulting in being over/underweight, have higher rates of mental illness, oral health and dental problems, diabetes, epilepsy (25-50%), experience gasto-intestinal problems, mobility problems and…… typically, do not complain much.

They have a life expectancy of 55-65 and this may be even shorter with severe levels of disability.

Common causes of death are Pneumonia, Cancer ( higher rates of oesophageal, stomach and gall bladder cancers), Accidents and Injuries, and Cardiovascular disease.
So it is inevitable you will need some extra skills in your kit to deliver safe and quality care to them.

People with learning disability may be more at risk of things going wrong than the general population, leading to varying degrees of harm being caused whilst in general hospitals.
:: National Patient Safety Agency Scotland::

Checklist for managing patients with ID:

  • Ascertain their current symptoms and problems. What are the specifics of the disability?
  • Make sure a FULL physical examination occurs.
    This is all going to take longer than usual, so make sure stuff doesn’t get skipped.
  • Review their current medications.
  • Evaluate weight and nutrition status.
  • Evaluate social situation (supports/home/work)
  • Have there been any recent changes in behaviour (potential mental health issues)?
  • Clarify consent/guardianship issues.
  • What is the level of understanding of the patient?
  • What are the best methods of effectively communicating with the patient (see below)
  • Does that patient have any specific ‘challenging behaviours’.
    The most common challenging behaviours include: Non-compliance, becoming avoidant and withdrawn, inappropriate social behaviours, destructive/violent behaviour and self harm. If they do have such behaviours:
  • What are their triggers?
  • What is the best way to respond to any escalation?

Remember: having an ID does not automatically mean ‘no capacity to consent’.
Listen to the carers!

The importance of valuing the experience and knowledge of family members and carers cannot be over emphasised in the assessment and management of patients presenting who have ID.

Communicating with patients who have ID:

Try to minimise distractions.
Slow down. Use short clear sentences and simple language. Don’t shout. Be patient.
Take time to try and establish some rapport.
Sign post your communication.

People with ID have difficulty multi-tasking the processing of information, so only talk about one idea at a time and signpost that idea.

For example: “OK Julie…we are going to talk about the beach now” …..and later….. “OK Julie we have stopped talking about the beach, we are going to talk about cars now.”

Be concrete.

Reinforce the important messages and check back to make sure they understand. But don’t just say “do you understand?” Get them demonstrate it to you.
Oh, and make sure you give them permission ‘not to get it’. Thats OK.

Consider using tools such as The Hospital Communication Book. This is an excellent resource that you can download for free as a pdf:

The Hospital Communication Book 

Pain.

This is a big one to watch. Pain is very often under evaluated and under treated in these patients.

Some useful tools to evaluate their pain levels include the Abbey Pain Scale and DISDAT tool (http://prc.coh.org/PainNOA/Dis%20DAT_Tool.pdf).

UNDERSTAND the challenges:

Most challenging behaviours you will encounter from patient with ID are coming from 2 simple places: Fear and Frustration.
By anticipating this and working to lessen the potential for them to develop, you can greatly improve the effectiveness of your care delivery

Use a calm, confident tone of voice.
Never use terms unfamiliar with the client.
Do not order the client to do something.
Encourage positive behaviour, not challenging behaviour.
Requests should be met (when possible).
Saying ‘no’ should be avoided when possible.
Try to find out what is upsetting the patient.
Active listening.
Never threaten, intimidate or challenge.
Do not copy their emotions.

People with ID often use the emotions of those around them to modulate their own responses.


Thanks to David Addison a Professional Development Officer with our Intensive Treatment & Support (ITAS) Service, who gave a presentation to our ED nurses from which most of this information was obtained.

Resources:

  1. Guidelines for Managing Patients with Intellectual Disability in the Emergency Room. Published by Centre for Addiction and Mental Health http://www.camh.net/Publications/Resources_for_Professionals/ guidelines_manageclient_emerg2003.pdf
  2. Detecting pain in people with an intellectual disability. Accident and Emergency Nursing Volume 12, Issue 4, October 2004. http://www.sciencedirect.com/science/article/pii/S0965230204000475

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