Interaction, activity, distress and dementia

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From birth to death, communication and social interaction is a fundamental human need.  Our mental and physical well-being depends on it; without it we become distressed. Eventually we may become passive and cease to try to express our needs and feelings.

On the bus the other day I watched two women come on board with a nine or ten month baby in a pushchair. They arranged the chair facing them and made the baby comfortable, giving him a bottle of juice. So far, so good, but then for the rest of the journey they both sat completely engrossed in their mobile phones, ignoring all the baby’s attempts to communicate. He did wave and gurgle at them for a while, then made some more protesting noises, finally turning away with a resigned sigh, his whole face and body looking slumped and dejected. I got the impression he was used to being ignored, and felt very sad.

There is good evidence of the distress a baby feels when a parent fails to interact. See “the still face experiment.” https://www.youtube.com/watch?v=apzXGEbZht0

I was thinking about this during a visit this week to a specialist dementia ward.  At Healthcare Improvement Scotland, members of the Focus on Dementia team are supporting improvement work in specialist dementia units. We were invited to go and see what the ward was doing to transform the experience of patients, all of whom have advanced dementia.

Two years ago, the ward had a reputation as a “difficult place to work” There was a high staff sickness rate and high staff turnover. Many of the patients were on one to one observation because of their distressed behaviour, often referred to then as “challenging, aggressive or violent”, and frequent use of antipsychotic medication was taken for granted as a routine part of care.

Now things ARE different. One to one observations are hardly ever needed and the use of anti-psychotic medication is a fraction of what it was. Staff morale is much higher and the staff sickness rate has dropped dramatically. Datix reports, which used to be a major feature of life on the ward, are now comparatively rare, since incidents of harm resulting from distressed behaviour are much fewer.

Why?

Because staff interact with the patients and do activities with them. Patients are no longer sidelined as incapable of participating because of their dementia. There are regular trips out, as well as plenty of access to the garden, and a range of indoor activities.  Staff also keep records of when patients get upset, so they can identify patterns and causes.

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One of the rooms has been set up as a cafe. During our visit, most of the patients were there, contentedly sitting with their mugs of tea, some of them outside in the sunshine on the patio.

Communication takes many forms. I see the cafe as an environment which feels familiar and safe, and communicates acceptance of the people with dementia as individuals who can take part in normal life. It goes a long was to mitigate the effect of the institutional setting which tends to be the opposite; alien and frightening, taking away the person’s agency and sense of self. Of course, staff were engaging with the patients too.

A person with dementia who cannot take part in accustomed activities unaided, or cannot communicate verbally, is not a baby. They are a fully grown adult with a wealth of history and life experience. But in one way they are very similar: failure to involve them in interaction and activity can cause them great distress.

Rebecca Kellett, August 2018

AHP Clinical Lead, Focus on Dementia, Healthcare Improvement Scotland
Speech and Language Therapy Clinical Lead for dementia, NHS Lothian.

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AHPs (Allied Health Professionals) work in partnership with families, carers and communities to support people with dementia to engage in purposeful activity and participate in conversations and other forms of communication.

For the Alzheimer Scotland/Scottish Government policy document on AHPs’ contribution to supporting people living with dementia, see Connecting People, Connecting Support
https://www.alzscot.org/assets/0002/9408/AHP_Report_2017_Web.pdf

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One thought on “Interaction, activity, distress and dementia

  1. Thankyou this article was well written clear I could understand the why behind what I was seeing and why I know instinctively it was causing people living with Dementia distress
    a big Thank You 🙏

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