Depression In People With Intellectual Disabilities

Sheila  Hollins (UK) and Eimear Allen (UK)

Depression is often not recognized in people with intellectual disabilities and/or autism, often due to communication difficulties or atypical presentations of depression.  Depression is likely to be much more common in people with intellectual disabilities than the general population – it is estimated that mental health conditions are up to 50% more common in people with intellectual disabilities than the general population.

Many people will experience depression at some time in their lives – this may be directly linked to major life events such as stress, illness, abuse, bereavement or trauma.  Sometimes, there is no clear cause for a person to experience depression.  If a person’s feelings of depressions do not resolve spontaneously within a reasonable timeframe, specialist supports may be required – usually this support can be accessed via your GP, who can either begin therapy or refer you on to the most appropriate service available to you.

In people with intellectual disabilities, depression may not be recognized as an illness on its own, and people may see the symptoms as directly linked to the person’s intellectual disability – this is called diagnostic overshadowing.  For some people, the symptoms may be recognized, but misdiagnosed.  For example, a person with Down’s syndrome experiencing mild symptoms of depression maybe misdiagnosed with early-stage dementia as it is known that dementia is common amongst people with Down’s syndrome.  Symptoms of depression may be associated with underlying physical health conditions, such as hypothyroidism.  It is important that physical health is also explored.

Communication Skills

Difficulty in communication can make it more difficult for someone to express their changes in mood, and it can be difficult for others to pick up on these changes.  Depression is often under-recognized in those with communication difficulties, particularly where a person is unable to communicate verbally their feelings of low mood, or do not have the appropriate resources in place to communicate feelings non-verbally.

Where verbal communication is minimal, or a person has difficulty recognizing and communicating feelings, there are a number of alternative strategies that can be used to support the person to express how they are feeling.  It helps to have a good understanding of the person’s strengths and support needs for communication.  However, often use of alternative methods of communication may be a series of trial and error, until you can find the most appropriate method to suit the individual.

A speech and language therapist would be able to complete an assessment of communication needs, or offer new ideas to help support that person’s communication.  Once you are aware of the level of support required, you could use personal photographs, PECs (picture exchange communication), signs – including Makaton and BSL - social stories or specialist books created to support a person with specific scenarios.   Books Beyond Works books ‘Ron’s feeling Blue’ and ‘Sonia’s Feeling Sad’, are specifically linked to overcoming depression and ‘I Can Get Through It’ supports an understanding of any underlying trauma and the process of therapy. ‘Feeling Cross and Sorting It Out’ is another book to help support a person who may be overwhelmed by their emotions, or unsure of the best way to respond to things that make them angry. There are a number of other books by Books Beyond Words to support communication and preparation for changes including ‘Jenny Speaks Out’, When Someone Dies’,  ‘Speaking up for Myself’, ‘Cooking with Friends’, ‘Belonging’, ‘Peter’s New Home’, ‘Hug Me, Touch Me’ and ‘Making Friends’, among many others.

The use of assistive technology can also be hugely valuable in supporting communications. Many people with intellectual disabilities now use an iPad or similar device, which has applications to support communications, including pictures that can be shown to their communication partner, or some even create sentences that will be spoken out loud via the device. Many people find this an easier method of supporting communication, as all of the images can be kept on one device. There are also applications available on iPads which have a number of social stories available and the option to create personalized stories for an individual. Useful apps include: social stories, visual schedules and fun routines. The BWStoryApp is a searchable App with many short stories relevant to depression. Devices such as iPads can have a number of uses, including calls and the use of video chats to aid communications with family members/friends that are not nearby, helping to minimize the risk of social isolation.

This can help both the person and those supporting them to gain a better understanding of their condition and support them to make informed decisions about their care and treatment.

Symptoms of Depression

There are many different symptoms associated with depression, and their presentation can vary from person to person.  These include, but are not limited to:

• Social withdrawal
• Anxiety
• Thoughts about death
• Suicidal ideation/thoughts/actions
• Self-harm
• Waking up early in the mornings, without having had enough sleep
• Trouble falling asleep
• Sleeping too much
• Losing or gaining weight
• Loss of appetite
• Low mood
• Loss of sexual interest
• Loss of confidence
• Self-blame and/or inappropriate guilt
• Inability to make decisions
• Difficulty concentrating
• Slowed thinking
• Loss of self-care skills
• Aggression
• Irritability
• Loss of interest in activities

Social Withdrawal

Often, people experiencing depression do not engage in social interactions in the same way as they would have prior to experiencing depression. This can appear as declining invites to social activities that they may have enjoyed before, not interacting with family or carers in the same way as before or not seeing their friends.

Anxiety

Anxiety is frequently experienced by those with depression. This might include fearful thoughts and worries and associated bodily sensations, such as nausea, sweating, chest pain, palpitations, dry mouth and frequent urination. Often, people who have anxiety also suffer anxiety attacks, during which they feel that they might die.

Low Mood

Many people who have experienced more severe forms of depression say they can feel overwhelmed by their dark/low moods, whilst others suggest depression is like having intense physical pain. It is much more than just feeling a bit low.

Loss of Interest

People experiencing depression often lose their excitement for life. Hobbies and interests lose their appeal, while everything feels challenging or too much trouble, and uses more energy than usual. Lack of energy and fatigue are frequent features associated with depression. These symptoms are frequently found in people with mild intellectual disabilities, but are more difficult to identify in people with more severe intellectual disabilities, but there is no evidence to suggest that those with more severe intellectual disabilities do not experience these symptoms too.

Lack of Energy/Tiredness

Fatigue is commonly associated with depression; this is not within the person’s control and may require attention from the GP. Physical aches and pains are frequently noted also. As we often find that people with intellectual disabilities may have undiagnosed physical health needs, it is vital that the GP excludes physical causes for the lack of energy and aches/pains before considering depression. Family members, carers and friends may find it difficult to comprehend and be empathetic towards the person’s depression and lack of enjoyment, especially when they can see no obvious cause for the depression.

Obsessional Thoughts

Obsessional thoughts and compulsive behaviours can be noticed for the first time in depression. These may be linked to past traumatic experiences. Repetitive behaviours, including self-injurious behaviours, may also become far more frequent and intense when a person is experiencing depression. Any history of trauma should be explored carefully and the possibility of post-traumatic stress disorder (PTSD) considered.

Cognitive Features

Differences in the way people experiencing depression think are known as cognitive features, which can include: self-criticism, poor concentration, lack of motivation, difficulty in making decisions, feeling worthless, self-blame, and suicidal thoughts/behaviours. Losing self-confidence and self-esteem is commonly associated with depression. ‘Speaking Up for Myself’ by Books Beyond Words helps to support a person to build self-confidence and self-esteem, and might be worth looking at in the earlier stages of depression.

In more severe cases of depression, thinking might be slowed down, along with body movements and speech, which leads to a state known as psychomotor retardation.  Psychomotor agitation can also be seen in more severe cases of depression; this means not being able to sit and relax, and the person may be constantly fidgeting. Sometimes, a person experiencing severe depression will have extreme thoughts that can be described as depressive delusions, which can often be accompanied by hallucinations, which might indicate psychotic depression.

Loss of skills due to the slowing down of cognition and bodily movements can be the main way depression presents itself. Self-care skills including hygiene, bladder and bowel control and dressing/changing clothes, may need to be relearned following the treatment of a depressive disorder.

It can be difficult to separate the cognitive features of depression from those associated with an intellectual disability. It is important to have a grasp of the person’s functional abilities, communication preferences, and their strengths and needs prior to the onset of depression.

Somatic Features of Depression

Somatic biological features may occur in a person experiencing depression (e.g. loss of appetite and associated weight loss, loss of sexual interest, sleep disturbance, feeling of palpitations or obstipation), and in severe cases, are likely to require antidepressant therapy, supported by emotional therapies. Those who experience somatic features of depression often find that their mood is at its worst in the morning, and improves as the day goes on, this is known as diurnal variation of mood.

Sleep disturbance is a common feature associated with depression and can be incredibly variable (e.g. difficulty falling asleep, difficulty staying asleep, early morning waking, restless sleep and excessive sleeping). Sleep disturbance is an important feature of depression to note among those with intellectual disabilities as it can be apparent in those experiencing depression at any cognitive level, and is more likely to be noticed by family members/spouses/carers.

Differential Diagnosis

Differential diagnosis is a process whereby a practitioner differentiates between two or more conditions that might be the cause of a person’s symptoms. In depression this might include:

• A physical cause such as hypothyroidism, chronic pain, chronic fatigue or viral illness.
• Dementia.
• Mood changes associated with a person’s menstrual cycle.

Screening for Physical Health Problems

Depression can often be confused with other illnesses, especially when the predominant symptoms are behavioural changes. Certain physical health conditions can also trigger depression. It is essential that a full and thorough physical examination be carried out where there is any doubt regarding the diagnosis, and to treat any co-existing physical health needs. A full recovery from depressive illness has been linked to good physical health care. This includes management of epilepsy, endocrine abnormalities (e.g. hypothyroidism), appropriately supporting mobility or sensory impairments and managing any other medical or dental needs.

Barriers to good Health Care among People with Intellectual Disabilities and Depression

• People with an intellectual disability may not recognize their symptoms as an indicator of need to visit the doctor.
• People with an intellectual disability, who do recognize the need to see a doctor, may not be able to communicate this effectively/the people around them may misinterpret what their need is.
• Family members/spouses/carers may not realise the significance of symptoms, or feel that they are minor and do not require medical attention.
• People with depression can be challenging to live with at times, due to their symptoms and unpredictability, thus family/spouses/carers may require practical advice to best support the person, and themselves.
• The person might not be provided with appropriate access to a healthcare professional.
• Decision-making in relation to healthcare requires the provision of appropriate, adequate and accessible resources/information to support in the decision-making process, and these may not be available in a timely manner from the healthcare professional, which can delay assessment, diagnosis and treatment.
• The person may not be able to communicate their symptoms to a medical professional in a clear way, or answer questions in the expected way. They also may not fully understand the reason for being assessed by a doctor, and may not cooperate.
• They may not be offered the same treatment as others with similar conditions due to potential interactions with other medications, difficulty obtaining consent or assumptions being made regarding how they might respond to some of the treatments.
• Treatment may not be reviewed as timely or necessary, due to repeat prescriptions being ordered by carers or failure by the healthcare professional  or carers to recognize changes in the persons need for treatment.
• A person who is receiving care, might not have the same people supporting them for the duration of treatment, so they may fail to recognize that the person is improving or deteriorating.
• Diagnostic overshadowing is a common occurrence among people with intellectual disabilities. This is where the healthcare professional assessing the person, misdiagnoses them on behalf of their intellectual disability e.g. where social withdrawal is seen, this may be picked up as an element of their intellectual disability, as opposed to a new symptom of potential depressive illness.

Aetiology

Depression is not caused by one single factor. There are often a number of interlinking causes that lead to a person becoming depressed. Factors that are commonly associated with depression include:

• Biological (genetics, physical illness)
• Psychological (having experienced abuse or a bereavement)
• Social (poverty, boredom, isolation, relationship problems)
• Unrecognised autism which is commonly associated with intellectual disability

Generally, factors associated with depression interact with a stressor. This stressor might either trigger or maintain a depressive illness. There is a huge variety of potential stressors, however, they usually have a perceived element of threat or loss:

• Changes to routine
• Moving home
• Illness or chronic pain
• Experiencing crime and/or abuse or other trauma
• Usual support staff leaving, or moving to a new job
• Bereavement
• Loss of job/moving to a new job

Individuals vary in their perception of events as threatening or as emotional losses, so it is necessary to explore sensitively with the person what type of events might be experienced as a personal loss or threat. These are called life events - there is evidence to suggest that people with intellectual disabilities are at higher risk of experiencing adverse life events. Usually, there are a mixture of factors that lead to a person’s depressive illness. All of these must be identified and addressed in order to support the person to become and stay well.

Management

A person-centred approach should be adopted for the duration of treatment, and during any interventions. Interventions must be tailored to suit each person, and thus should be preceded by a thorough assessment of needs including biological, psychological, relational and social elements. Depression which fails to respond to treatment might suggest that there is an additional factor maintaining the depression, which has not been addressed, including possible adverse childhood experiences (ACE’s) or other trauma in a person’s history. Some people might require antidepressant medications, but these are not required in every depressive illness. Counselling and psychotherapy are underused for people with intellectual disabilities but, as with everyone with depression, should always be considered and offered promptly. Therapy can be very effective both one-to-one and in groups. Simple adjustments may be needed, such as reading relevant wordless stories together to help the therapist understand the inner world of their client/patient/group and to help the person explore their worries.

References

Beyond Words story app: https://booksbeyondwords.co.uk/bw-story-app

Beyond Words YouTube channel:  https://www.youtube.com/channel/UCuJd8IK1K9lwVPGrZmOrOwQ

Austin, K. et al. (2018) Depression and anxiety symptoms during the transition to early adulthood for people with intellectual disabilities: Depression and anxiety in young adults with ID, Journal of Intellectual Disability Research, 62(5)

Egerton, J., Carpenter, B. & Hollins, S. (2020) Supporting SEMH needs through wordless picture stories

Hollins, S. & Barratt, N. Feeling Cross and Sorting it Out, Books Beyond Words

ICD-10 Classification of Mental and Behavioral Disorders. Clinical Descriptions and Diagnostic guidelines (ICD-10)

Maj, M (2007) Delusions in Major Depressive Disorder: Recommendations from the DSM-V, Karger, 41:1-3

Martin, A. et al. (2009) An Exploratory Study of the Experiences of Registered Nurses-Intellectual Disability Communicating with Adults with Intellectual Disability Who Use Non-Verbal Communication, Conference: 10th Annual Interdisciplinary Research Conference, Trinity College Dublin

McGillivray, J. & McCabe, M., (2010) Detecting and treating depression in people with mild intellectual disability: The views of key stakeholders, British Journal of Learning Disabilities, 38(1):68-76

Myrbakk, E. & Tetzchner, S. (2008) Psychiatric disorders and behavior problems in people with intellectual disability, Research in Developmental Disabilities, 29(4):316-32

Owuor, J. & Larkan, F. (2017) Assistive Technology for an Inclusive Society for People with Intellectual Disability, Studies in health technology and informatics, 242:805-812

Shaddel, F. et al. (2019) Intellectual disabilities: improving access to therapeutic communities: Intellectual disabilities, Progress in Neurology and Psychiatry 20(6):30-35

Smiley, E. & Cooper S,A. (2003) Intellectual disabilities, depressive episode, diagnostic criteria and Diagnostic Criteria for Psychiatric Disorders for Use with Adults with Learning Disabilities/Mental Retardation (DC-LD), Journal of Intellectual Disability Research, 47(1):62-71

This article was first published on this site in 2002 and was updated in 2020.