Dementia and Wellbeing Programme

Michael Spellman, Dementia & Mental Well Being Lead talks to us about the Dementia and Mental Wellbeing programme at The ExtraCare Charitable Trust, which aims to focus individually on how each person experiences their dementia, and provide care that responds to this specific knowledge.

In the care industry, we can often think of residents as ‘closed books’ or ‘locked doors’ because we feel they hold the secrets of their minds and personalities behind a locked door. A locked door created by dementia. There is always something about the person that others do not understand. Why, for example, do they get agitated every day after lunch? And how can we support that person better? Our Dementia and Mental Wellbeing Enablers look to answer these questions. We want to know our residents better, to understand the uniqueness of each of them so we can improve the person’s well-being and ensure that everyone involved in their care can support and understand their behaviour.

The title of Our DMW Enabler’s used to be called Locksmith, a name which came from the original research steering group set up in 2007 to look at improving care standards, headed up by the incredible Professor Dawn Brooker, then at Bradford Dementia Group. Dawn (who later joined the Association for Dementia studies at Worcester University, and also published a veritable dementia bible called ‘Person-Centred Dementia Care: Making services better’) and her team still train DMW Enablers to this day, as well as providing us with a wealth of support. For me, even though the research was before my time, Dawn’s work has been my touch point for learning and understanding dementia generally.

“Every person living with dementia is different and has a different experience of their dementia – it is a complex interplay with all other parts of their life and self.”

At the time, 2007 to 2009, the research group wanted a role title which did not immediately say ‘dementia’ or ‘mental health’, as these are scary words for many of our residents. Things have changed, and we want to use terms and talk about dementia and mental health openly. The word Enabler helps us understand what this role is for. Dementia causes impairments which disable, are goal is to enable residents to be as independent as possible for as long as possible.

Enabling a person to live well with dementia starts with understanding their unique experience of it. A DMW Enabler takes the time to find out the answers to numerous questions. It’s vital we understand how the dementia has affected the person’s neurological impairment. Some of the things we consider include:

• How does dementia affect the person’s cognitive abilities?
• What are their strengths and weaknesses?
• Does the person have any long term conditions, or pain?
• How do these things impact on their experience of life?
• Are they able to verbalise things like pain?
• If not, how do we know they are in pain?
• Do we need to think of this on their behalf?
• What is the person’s life history?
• Where have they been, and worked?
• What challenges have they faced?
• What are their innate characteristics?
• What are the person’s connections and attachments?
• Who and what is in the person’s life and what impact do they have on the person?
• What does the person need to do to stay connected to these things?

All these things help us to separate the behaviours which are associated with their experience of dementia and behaviours which are quintessentially them, as the two can sometimes be confused. A DMW Enabler spends their time finding out this information, and then using it. I think it’s a bit like a dot-to-dot or jigsaw, you are building a picture, but with lots of facts, feelings and observations.

Unlocking the mystery of why a person becomes agitated each day after lunch, for instance, means the DMW Enabler will need to observe their behaviour, and spend quality time getting to know the person. Is there any trend in the day or time? What is the resident’s point of view? Are they aware they are in a care setting, or do they believe that they are somewhere else? If so, what may they have been doing at this time of day? It may be that the resident was a homemaker and that the afternoon was a very active part of their day, as they prepared for family coming home or collecting children. The person experiencing this issue may benefit from meaningful activity that reflects this very active part of their day; the activity can’t just be about keeping the person quiet or superficially occupying them, interventions need meaning and must be based on an in-depth understanding of the person.

A DMW Enabler unpicks issues around the person’s experience of dementia and unlocks their potential to live well.

As you can see, our approach is all about focusing on the individual; who they are, what their preferences are, what matters to them, what they have experienced in the past and how that affects their behaviour in the here and now. And I think this is why it has been so successful. When you learn all of these things, and the people caring for the person take the time to tailor care and support based on this learning, the person will always benefit, because they are living in an environment with them and their needs at the centre. In fact, whoever we are and whatever service we are receiving, wouldn’t we all want the people interacting with us to really ‘get us’ and avoid us being misunderstood, undermined, or challenged? The approach works because it’s something that we all want, whether we are living with dementia or not.