HDRC – Hearing the “voice of the members”

Housing and Dementia Research Consortium logo

In this blog we hear from a member of the HDRCC () steering group – Michael Spellman who is the Dementia Lead at The ExtraCare Charitable Trust (ECCT) – on the challenge of responding to distress among residents living with dementia in ECCT extra care housing schemes and villages.

Responding to Distress

Having been the Dementia Lead at ExtraCare for over six years now there is one topic that comes up most days in my role: ‘challenging behaviour’, ‘behaviour that challenges’, or even ‘behavioural and psychological symptoms of dementia (BPSD)’.

Whatever it gets called, and some terminology is better than others, we hear about it a lot, often in a negative context. Which is strange because strip it back to its bare bones, the person we are supporting is trying to tell us something.

Not long ago it was suggested I write a Challenging Behaviour Policy for us to use internally. My first thought was ‘where do you start!’ What we ended up with was a much simpler tool for people to use that brings together two great frameworks to better understand the ways in which people living with dementia can communicate.

In some ways, a long complex policy represents the issue itself in that perhaps we don’t think of this issue simply enough! It’s the communication of an unmet need. The meaning of behaviours can get lost and be too quickly attached to ‘it’s the dementia’.

Behaviours that challenge, or, as we have preferred to describe them in our guidance, ‘distress responses’, highlight that distress can occur as a result of a person being challenged in some way, and quite often indirectly, which results in a distressed behaviour. For example if I felt under threat I may react to that threat – get away or even confront the threat. If I felt I was missing something important to me, I may go looking for it and be very concerned, not welcoming any barriers.

At times we are faced with a distressed person with no warning. In this instance the VERA framework (Blackhall A et al, 2011) can be ideal. It provides us with a very caring de-escalation approach that validates the person’s perspective and engages with the feeling that is driving the behaviour. If I’m distressed because I can’t find my small child, I don’t need you to correct me that my child is a grown adult. I need someone to connect with me, understand my point of view and provide reassurance and occupation that fulfils my need.

Will the approach work ten out of ten times? No, but recording what works and what does not can help, as we know a person’s unique experience of dementia will not always fit neatly into a framework, especially if we don’t really know that person.

Example of how to capture information against the VERA framework

Many residents living with us experience distressed responses on an ongoing basis, sometimes multiple times per day. Planning a consistent response to this was the reason we included a second great framework into the guidance, Truth and Lies framework (Kirtley, A. & Williamson, T., 2016). This frameworks assists us in a tricky area, when should truth telling and lies be used in regards to a distress response. The framework aids understanding that while we put a lot of emphasis on the truth or the lie, what we are really interested in is whether our response promotes well-being or ill-being.

The truth and lies framework

The example we used within our own guidance is based around bereavement and loss and how this may be experienced by a person whose memories around a loss may fluctuate, leading to distress.

Example of truth and lies

By bringing together two useful frameworks focusing on short-term and long-term intervention we hope to offer a resource that professionals or indeed families can use to better understand distress responses, and start to respond differently.


Blackhall, A., Hawkes, D., Hingley, D. and Wood, S. (2011). VERA framework: communicating with people who have dementia. Nursing Standard, 26(10), 35-39.

Kirtley, A. & Williamson, T. (2016). What is Truth? An inquiry about Truth and Lying in Dementia Care. Mental Health Foundation.

Keeping in touch

Connect with the HDRC on twitter @HousingDementia

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow

Connect with The ExtraCare Charitable Trust on twitter @ExtraCareOrgUk and on Facebook @TheExtraCareCharitableTrust

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