Depression and Low Mood in People with Severe and Profound Intellectual Disabilities

This article examines what is known about depression and low mood, how it may affect children and adults with severe and profound intellectual disabilities and how it can be treated.

What is low mood?

Low mood is an emotional state characterised by sadness, anxiety, low self-esteem, tiredness, and frustration.Sometimes low mood can be brought on by external factors such as the loss of a loved one, living with an illness, or stress. However you can also experience low mood without there being an obvious external cause.A low mood often gets better after a few days or weeks. It is sometimes possible to improve a low mood by making small changes in your life. For example, resolving something that’s bothering you or getting more sleep. Most people experience feelings of stress, anxiety or low mood during difficult times. A low mood may improve after a short period of time, or when life circumstances improve, rather than being a sign of depression.

What is depression?

If you have a low mood that lasts 2 weeks or more, it could be a sign of depression. The two core features of a major depressive episode are depressed mood or affect and an inability to feel pleasure (anhedonia).

Depression affects people in different ways and can cause a wide variety of symptoms ranging from lasting feelings of unhappiness and hopelessness, to losing interest in the things that used to be enjoyed and feeling very tearful. Many people with depression also have symptoms of anxiety.

There can be physical symptoms too, such as feeling constantly tired, sleeping badly, loss of  appetite, a high appetite and various aches and pains.

The symptoms of depression range from mild to severe. At its mildest, you may simply feel persistently low in spirit, while severe depression can make you feel that life is not worth living.

Please remember that there is a difference between expression of emotions and having low mood or depression. Expressing bad feelings may be safer and lead to better outcomes than bottling them up inside.

Causes of depression

Depression has been thought to be a disorder of the brain and because antidepressants work by changing brain chemistry, some people have assumed that depression is caused by changes in brain chemistry which are then ‘corrected’ by drugs. Some doctors may say that a person presenting with depression has a ‘chemical imbalance’ and needs medication to correct it. However, according to the UK mental health charity ‘Mind’, the evidence for this is very weak, and if changes to brain chemistry occur, it is not known whether these are the result of the depression or its cause.

Mental illness in all groups is thought to usually be caused by a combination of biological, genetic and environmental factors. Further research is needed in this area.

Risk factors for depression

People with intellectual disabilities are at least as vulnerable to mental illness in general as anyone else, and the incidence statistics suggest that they may actually be significantly more vulnerable.

People with severe and profound intellectual disabilities are more likely to have depression, but less likely to be diagnosed. A phenomenon known as ‘diagnostic overshadowing’ can lead to clinicians overlooking dual-diagnoses during psychiatric assessment and ascribing symptoms of depression to the intellectual disability rather than a mental health problem. therefore people not receiving the help and treatment that they need in intellectual disability populations.

People with severe and profound intellectual disabilities have limitations in problem-solving skills, cognitive and communication skills which can affect their ability to cope with stressful life events. The life circumstances of people with an intellectual disability may also increase their risk of developing mental health problems or experiencing mental distress. Factors that have been identified as protective in adults without intellectual disabilities, such as employment opportunities, meaningful day activities and socially supportive networks, may be less likely to be present and there can be an additional impact for those with severe and profound intellectual disabilities compared with those with mild or moderate intellectual disabilities.

Genetic factors may further increase the vulnerability of some people with intellectual disabilities for mental health problems, as evidenced by significant comorbidity rates of anxiety problems and psychosis in people with intellectual disabilities and certain genetic syndromes.

Having a learning disability can often mean that the individual has fewer psychological and material resources to deal with adversity and is more likely to experience social exclusion, poverty and abuse. Risk-averse service cultures contribute to restrictive environments which mean fewer opportunities for these individuals to build a sense of self-efficacy and develop problem-solving skills (Dagnan and Jahoda, 2006), and a lack of meaningful activity can increase vulnerability for mental health difficulties such as depression (Stancliffe et al, 2011).

Signs and symptoms of depression

It is now accepted that depressive symptoms in people with mild–moderate intellectual disabilities (IQ, 35–70) are similar to the ‘classic symptoms’ seen in people without intellectual disabilities but assessment is challenging for people who cannot self-report internal states and feelings.

Some classic observable signs of depression that are captured by the DSM (Diagnostic and Statistical Manual of Mental Disorders) and ICD (International Classification of Diseases) are seen in people with severe and profound intellectual disabilities who have depression. However, this group may also show ‘atypical symptoms’.

Classic symptoms

  • Depressed affect
  • Loss of interest and ability to feel pleasure
  • Irritability
  • Sleep disturbance
  • Psychomotor agitation
  • Reduced appetite
  • Crying
  • Fatigue, low energy, lethargy

Atypical symptoms that may be more specific to learning disability and may be labelled ‘Challenging behaviours’:

  • Aggression
  • Self-injury
  • Temper tantrums
  • Screaming
  • Disruptive behaviour

Other feelings, signs and symptoms that may be associated with low mood or depression:

  • Feeling bad about yourself, ‘empty’ or hopeless
  • Desire to isolate from people and activities
  • Withdrawal, lack of engagement, lack of eye contact
  • Irritability, agitation, frustration, anger
  • Loss or increase in appetite
  • Weight loss or gain
  • Changes in bowel activity
  • Feeling anxious or panicky, anxious behaviours
  • Having thoughts about not wanting to live or about harming yourself
  • Waking up early in the mornings, without having had enough sleep
  • Trouble falling asleep
  • Sleeping more than usual
  • Difficulties with memory, paying attention, concentrating
  • Slowed thinking
  • Loss of skills
  • Sad facial expressions, frowning
  • Changes in vocalisations, whimpering, screaming
  • Moving more slowly than normal
  • Unexplained aches and pains
  • Changes in seizure activity

Eaton et al (2021) conducted a systematic review exploring behaviours associated with low mood and depression in people with severe and profound intellectual disabilities and found there to be an association between challenging behaviours such as aggression, self-injury, temper tantrums, screaming and disruptive behaviour. Although these so called challenging behaviours have been found to be correlated with depression in people with severe and profound intellectual disabilities, correlation does not imply causation (Eaton et al, 2021).

It is important to note that behaviour problems are not specific to depression and there can be multiple causative factors. Mis-diagnosis may occur if the person is thought to be depressed but their behaviours are caused by something else, such as the presence of pain or as a communicative function. However, depression may be missed in people who display distressed behaviours, for example if their behaviours are dismissed and attributed to ‘playing up’ or unnecessarily ‘attention seeking’.

Behaviours may alert to underlying distress, which may or may not be depression, but certainly warrants further investigation. Furthermore then presence of challenging behaviour is a risk factor for developing depression in the future (Eaton et al, 2021).

  • Diagnosis should only be carried out by a doctor.
  • Teachers and people in school are well placed to notice warning signs and symptoms.
  • Accurate and timely diagnosis also depends on maintaining good communication between family, carers and members of the multi-disciplinary team.

Other possible causes for the same symptoms as seen with depression:

  • Sensory impairments
  • Sensory sensitivities
  • Illness, health problems, pain
  • Other mental health problems (e.g. anxiety, trauma, psychosis)
  • Sleep
  • Nutrition
  • Adverse life events

Treatment and strategies for supporting someone suffering from depression

Standard treatments for depression are thought not to be as effective for people with severe and profound intellectual disabilities. Furthermore, limitations in communication skills and understanding can prevent access to talking therapies such as cognitive–behavioural therapy (CBT) based interventions. It is also possible that people with intellectual disabilities are more sensitive to the side effects of pharmacotherapies, or have greater difficulties in reporting side effects when these occur, which raises the potential of more serious consequences, and the need for different dosing regimens compared with other people (Vereenooghe, 2018).

Clearly, more research is needed to better understand depression and further exploration of effective treatment strategies for people with severe and profound intellectual disabilities is long overdue.

In the meantime, there are things that we can to help someone suffering from depression or low mood to feel better. The NHS suggest the following 5 ways:

1) Reduce stress

2) Increase enjoyment

3) Boost self-esteem

4) Maintain a healthy lifestyle

5) Communication, relationships and connection

Here are some ideas of how to put these strategies into practice when supporting someone with severe or profound intellectual disabilities.

1) Reduce stress

  • Avoid too much pressure
  • Physical exercise and movement
  • Breathing for calm

2) Increase enjoyment

  • Activities that are pleasurable such as massage and music
  • Try new things (if person is not feeling anxious)

3) Boost self-esteem

  • Participate in creative activities such as art, cooking and gardening
  • Share and celebrate achievements and contributions with others
  • Enable choice and agency – being able to say ‘no’ as well as ‘yes’
  • Enable person to feel, sense and know that they are good to be with

4) Maintain a healthy lifestyle

  • Pay attention to diet, movement, posture and exercise, sleep hygiene and getting fresh air

5) Communication, relationships and connection

  • Ensure person’s voice is listened to and heard
  • Enable participation in meaningful interactions

For more on how to put these ideas into practice see the NAC website ‘how to guides’.

For information and booking onto NAC’s online training course click here depression and low mood course.

Reference

Eaton, C., Tarver, J., Shirazi, A., Pearson, E., Walker, L., Bird, M., Oliver, C. and Waite, J. (2021) A systematic review of the behaviours associated with depression in people with severe–profound intellectual disability. Journal of Intellectual Disability Research, 65(3), 221-229.