GUEST BLOG: Caring for people with dementia in domiciliary care

Dr Emma Williams is a certified behaviour analyst with over 20 years of experience working with older adults with dementia. She is the founder of PACT - Positive Ageing Consultancy and Training, which provides expert behavioural-based online training & consultancy services for all carers of people living with dementia and emwillcare. Less Distress, by emwillcare, is supported by the Alzheimer's Society and is an AI-powered service to assess, analyse, predict and proactively prevent distressed behaviour in dementia care, and the first of its kind in the world.

In this guest blog for Nursebuddy, Dr Emma outlines what it can be like for a domiciliary care worker when they encounter someone living with dementia for the first time, as well as offering several practical tips for supporting them.

What's it like to support someone with dementia?

Working as a domiciliary carer, it’s likely that you’re going to meet someone living with dementia. And it's really natural to feel nervous or unsure, especially if this is new to you.

When you meet someone living with dementia for the first time, you might notice behaviours like confusion or repetitive questions, forgetfulness or difficulties with kind of recognition.  And you might also encounter distress behaviours such as agitation, pacing, or emotional outbursts. The most important thing to do is just remember to stay as calm and patient as possible.

What is a behaviour analyst?

Behaviour analysts study why people behave the way they do. They look at what happens before and after a behaviour to understand its purpose or its function. By identifying the reasons behind behaviours and understanding why they are happening, we can help to develop tailored and evidence-based strategies that are able to reduce distress behaviour and improve the person’s overall wellbeing. It also reduces the need for damaging antipsychotics that are sometimes prescribed for behavioural difficulties.

Watch: Dr Emma Williams of PACT explains how behaviour analysts support people with dementia.

How common is behaviour analysis within domiciliary care?

Behaviour analysis is a scientific field and its principles are widely used in areas like mental health and within learning disabilities. However, access to specialised behavioural support for older adults, especially those living with dementia, is actually incredibly limited. Globally, there are around 74,000 behaviour analysts, but only about 80 of them specialise in dementia care (that’s less than 0.1%). This means that older adults - especially those in dementia care - are often overlooked when it comes to accessing this type of expertise.

Why is behaviour analysis needed for people with dementia?

It’s a common misconception that distressed behaviours in dementia like agitation, wandering or aggression are just part of the condition.  But that's simply not true. These behaviours always happen for a reason and they are ways of communicating unmet needs. And up to 90% of people who are living with dementia experience some form of distressed behaviour. So it’s really important that we increase the availability of behaviour analysis for people with dementia.

Watch on-demand
Caring for people with dementia, with Dr Emma Williams of PACT.

Why do distressed behaviours happen with dementia?

There are generally four main reasons why people show some sort of distressed behaviour - and all relate to trying to communicate some kind of unmet need.

1. Attention - often the person is seeking connection, reassurance or affection. For example, they might repeat questions because they want to engage with you or feel secure.

2. Escape - the person is trying to get away from something, often because they find it unpleasant, overwhelming or confusing. For example, refusing personal care like help with washing or dressing could actually be their way of saying I'm scared or I don't understand what's happening.

3. Sensory - this relates to how a person is experiencing their environment. They might be too cold or hot. They might be in pain or overwhelmed by noise or light. This can lead to agitation, pacing or withdrawal from a situation.

4. Access - the person is trying to get to something tangible. So they might be hungry or thirsty, or want a favourite item or something familiar. Not being able to get these things can lead to a lot of frustration and distress.

Tips for caring for someone with dementia

Routines - try to stick to routines that guide the person through their day. For example, having meals in the same room at a similar time of day, can help keep someone on track

Stability - try not to move things around too much in their home, as it can confuse the person if things are not where they left them, or where they usually are.

Wayfinding - putting large, easily readable signs at eye-level can help people to find their way around their home, or painting the bathroom door a bright colour can make it easily recognisable.

Clutter - keep rooms and hallways tidy and free from clutter, as this can cause confusion or stop someone from moving freely around their home.

Mirrors - mirrors or reflective surfaces can confuse or distress a person, because they might see it as someone encroaching their personal space if they don’t recognise themselves.

Lighting - dim and shadowy areas can make navigation a bit more difficult, and the person might perceive things that aren't actually there in reality.

Photographs - having photographs of the person (at an age where they recognise themselves) can help them to feel familiar with their surroundings.

Break down tasks into smaller steps - focusing on something small can prevent a task from becoming too overwhelming all in one go. For example, "Let's go get ready for your bath", is actually quite a big task with multiple steps involved. So you could break it down to what's actually needed, such as starting with “can you take your shoes off first”.

Visual cues - if someone is not sure how to do something, it can be useful to give them a visual cue. For example, if you are asking someone to brush their teeth, it can help to actually show them the toothbrush so that they realise what you're trying to communicate with them because the word toothbrush might not mean anything to them anymore. Showing the object or miming the movement might help to trigger muscle memory to brush their teeth.

Choices - if someone gets overwhelmed quickly, it can be useful to limit decisions to two or three choices. For example, instead of asking what they want to wear today, you could ask them do they want to wear the red jumper or the green jumper.

Redirection - if someone is becoming upset with a situation, sometimes what we can do to reduce agitation is redirect their attention to something else. For example, if they've become fixated on wanting to go home, there's a reason why they're not feeling like they're home already.  So you could say something like, "Let's go have a cup of tea and we'll talk about your home instead." You can encourage the person to talk about their home in a way that's reassuring to them.

Reassurance - and above all, always offer reassurance, no matter what’s happening. Because it's always really reassuring to hear that someone's there to help you. That counts for all of us. If we're feeling a bit panicky, it's nice to have someone say: "It's all right. Don't worry. We'll work it out together."

Dr Emma Williams is a certified behaviour analyst with over 20 years of experience working with adults who have learning disabilities and older adults with dementia. She is the founder of Positive Ageing Consultancy and Training (PACT) and emwillcare, both of which aim to empower caregivers of people with dementia with effective, evidence-based strategies, transforming dementia care.

Watch Dr Emma's 30 minute webinar on caring for people with dementia in domiciliary care.