On Tuesday evening, WeLDNurses hosted a webchat dedicated to the detection of anxiety in people with learning disabilities. A range of individuals joined the chat including nurses, psychologists and students, with a broad range of different experiences. The chat covered topics such as the signs of anxiety, barriers to detection of anxiety, useful tools/assessments for use in a clinical setting and individuals’ reflections on mental health in people with learning disabilities following the Panorama documentary highlighting more cases of abuse. The following themes emerged from the chat:

Subtle changes to a person’s behaviour should not be ignored

There was consensus among participants that change in a person’s behaviour patterns may be something to take notice of because this may indicate a change to the person’s well-being or health status. Several participants in the chat indicated that it was important to know the person well in order to detect these changes. In addition, there was some discussion of anxiety in people with specific genetic syndromes. It was excellent to hear that participants were considering the importance syndrome characteristics, particularly given that research has shown specific genetic syndromes (e.g. fragile X, Williams and Cornelia de Lange syndrome) are at risk for the development of anxiety.

The challenge of detecting anxiety

It was also noted that being able to detect anxiety is challenging in people who have more significant disabilities because these individuals may not be able to describe their internal feelings or label the emotions they are experiencing.In addition, several participants commented that the signs and symptoms of anxiety are difficult to disentangle from other difficulties, such as pain from an undiagnosed health condition, or may simply be labelled as ‘challenging behaviour’.

The barriers to the effective identification of anxiety that were described in the chat included a lack of sufficient understanding or training for staff, poor or inappropriate living environments. The participants felt that the environment around the person can lead to anxiety being overlooked or responded to inappropriately. In the worse cases, as highlighted on the recent Panorama documentary, a person’s anxiety may heightened by inexperienced staff who do not have appropriate training or adhere ethical practices.  

Validated tools for the detection of mental health difficulties

It was encouraging to observe that many participants contributing to the chat had experience of using measures to detect mental health difficulties in people with intellectual disabilities. Many of the tools that were discussed, such as the Glasgow Anxiety Scale, are validated for people with mild to moderate intellectual disabilities and are free to download. Other measures discussed were the Anxiety, Depression and Mood Scale (ADAMS), and Mood, Interest and Pleasure Questionnaire. As the participants of the chat noted that anxiety symptoms can overlap with pain symptoms, there was also a detailed discussion of pain measures, including the DIS-DAT and FLACC. Many participants felt that the FLACC was a useful measure, and some commented that the DIS-DAT has been effective in their work, although less so for assessments conducted over a short timeframe.  It was also encouraging to hear of the use of Wellness Recovery Plans, to guide interventions.

A focus on developing moretraining and resources for LD Nurses

One of the exciting aspects of being part of the WeLDNurses webchat, is to hear about participants plans to do to improve awareness of mental health difficulties in people with learning disabilities. One participant commented that, ‘I’m going to update my LD awareness training for acute staff to include some MH in LD information and signpost to potential assessment tools, in liaison with our acute MH nurses.’ It is clear that coming together on webchats is important for sharing knowledge of good practice and it’s great to hear how that will be put into practice. Our team at Aston University will continue to work on developing measures to detect anxiety and low mood in people with severe to profound intellectual disabilities, and we hope to be able to share our measures with the WeLDNurses network in the not too distant future.

DrJane Waite & Dr Jo Tarver

Recommended resources by the groupincluded:

Cerebra Anxiety Guide. https://www.cerebra.org.uk/help-and-information/guides-for-parents/cerebra-anxiety-guide-guide-parents/

Cerebra Pain Guide. https://www.cerebra.org.uk/help-and-information/guides-for-parents/pain-in-children-with-severe-intellectual-disability-a-guide-for-parents/

The Feeling Down Report. https://www.mentalhealth.org.uk/sites/default/files/feeling-down-report-2014.pdf

Learning Disability Statistics: Mental Health Problems. https://www.mentalhealth.org.uk/learning-disabilities/help-information/learning-disability-statistics-/187699

Mental wellness in people with Down syndrome. https://www.amazon.co.uk/dp/1890627658/ref=cm_sw_r_tw_apa_i_7.tcDbHP3SFVP

Other resources:

Further Inform Genetic Resources (FIND). www.findresources.co.uk

Article on behavioural phenotypes.https://www.sciencedirect.com/science/article/pii/S1751722214000997

Intellectual Disability and Depression - Talking Therapies programme. https://www.e-lfh.org.uk/programmes/intellectual-disability-and-depression-talking-therapies/