Patients with dementia
Progressive communication impairment is arguably the most complicated, puzzling, frustrating and distressing feature of dementia – for staff and even more so for the individuals themselves. (And their anguished loved ones.) Mentalising skills are indispensable when talking with people with dementia because the more complex the situation in terms of feelings, thoughts and relationships, the more important it is to mentalise. As well as careful consideration of your own speech and what the patient is trying to say, it’s equally important to be very tuned in to what they seem to be feeling.
Validation techniques are an excellent way of addressing what’s underlying the apparently irrational or inaccurate things a patient is saying. The classic scenario is around time orientation, a particular area of confusion for people with dementia. Wrangles about, for example, which decade we’re currently in tend to be futile and demoralising for staff and patients. Unless there are valid reasons for trying to convince the patient of the real date, using validation techniques produce the more fruitful consideration of what the patient might be feeling about the period of time they are locked into.
An even more fraught ethical and practical, and very common, dilemma for staff is when a patient believes that a loved one who has died is still alive. The pragmatic situation is that it is very unlikely that the patient can be persuaded they are wrong. None of us like the process of someone trying to persuade us we are wrong, and it’s clear that when the disputed facts are about the death of a loved one, emotions are going to run very high. This is a classic situation where it’s best to use validation techniques.
Some of the most prevalent communication difficulties for people with dementia arise from severe memory limitations, especially short-term, such as:
- limited attention span
- impaired ability to be logical
- confusion and about past and present, including muddling generations
- impossibility of focusing on more than one thought at a time
- losing their train of thought
- repeating thoughts or words over and over
- given all the above, an unsurprising inability to maintain a conversational topic
More specifically, the following are often characteristics of the speech of people with dementia:
- saying very little and finding it particularly hard to initiate a conversation
- using ‘empty phrases’ (a rather loaded term for vague descriptions like “that thing” or “you know”.)
- Using generalised descriptions of an object whose name they can’t remember, or an apparently arbitrary substitute word or, impressively, creating a new word for it
As practitioners we’re often confused about how to respond to questions such as ‘Where is my dad?’, ‘I’ll be late for work!!’ (from a 91 year old), ‘Why are you keeping me here I must look after my children!!’
A helpful approach and an aid to memory for staff when working with patients diagnosed with dementia is VERA (must be associated with Vera Lynn and the 1940’s) – this stands for:
V= Validate, accepting that the behaviour exhibited has a value to the person and isn’t just a symptom of dementia
E= Emotion, paying attention to the emotional content of what the person’s saying
R= Reassure, can be as simple as saying ‘it’ll be okay’ and smiling, holding their hand
A= Activity, people with dementia need to feel occupied, active, see if you can engage them in some related activity
Example of VERA
Mr Joseph is trying to leave the ward, he’s up from his chair and very unsteady. He’s 91. He says ‘I’ll be late for work again, I’m going to be fired, I don’t know what to do. How do I get out?’
V….’You’re really worried Joseph, tell me about your work’
Here you accept his perception of the problem, you don’t question, and you encourage him to say more
E…..’I’d feel worried if I thought I might lose my job’.
This shows Joseph that you understand why he’d be worried.
R…..’You’re safe here Mr Joseph’ said with a smile
This states that no harm will come to him whether real or imagined
A…..’We’ve got some work to do here, can you help me tidy these chairs?’. (An activity that fits in with Mr Joseph’s preoccupation with work and incorporates his behaviour rather than invalidates it.)
Attitude/approach
- The over-riding priority is to help the patient to feel good about themselves, motivated to express themselves and confident about your desire to support them.
- Play to the patient’s strengths – their memory of the past; words, concepts, and topics that they often use
- Simple acts of physical contact such as holding or the person’s hand or putting your arm around them, can be very reassuring and contribute as much as a complex conversation with someone who isn’t this intellectually impaired.
- Appreciating the individual’s qualities and their history will be reflected in how you care for and regard (in both senses of the word!) the patient, and greatly help avoiding unintentionally being or sounding patronising.
- People with dementia do have some behaviours and needs which overlap with those of children. But of course they’re the very opposite of kids in terms of having decades of experiences, skills, relationships, achievements….
- When a patient is very withdrawn and unresponsive, and when you are having yet another incredibly pressurised shift, it’s easy to fall into the trap of speaking about them as if they weren’t there. Managing to make the extra time and effort to avoid this prevents the patient feeling excluded and/or more bewildered, and both reassures and sets a positive example to others including their loved ones and their other visitors.
Language
- Just like best cocktail party etiquette, it really helps to begin a conversation by identifying yourself by name and perhaps role and by calling the patient by their name.
- Using words that the patient is familiar and confident with, especially those that they use with the words’ conventional meanings.
- If the patient doesn’t have English as a first language, it’s a real bonus to learn and use some words and phrases from their (evocatively termed) ‘mother-tongue’ or ‘hear tongue’.
- Interrupting someone who has dementia when they’re trying to communicate an idea is likely to result in them losing their train of thought.
- But… talking with people with dementia creates an exception to the usual good practice of not jumping in quite quickly to provide a word the individual is struggling to find. Depending on the person and situation, helping out with a word or phrase can spare considerable frustration and distress, provided that its accuracy is checked with them.
- Open ended questions can be very daunting for people with dementia. For example, it’s easier for them to be given the option of saying yes or no to a choice of two, let’s say food, options.
Speech
- Making sure you face the person when speaking to them rather than being slightly (or very!) out of their line of sight – which might itself be limited by visual impairment.
- People with dementia usually remain highly sensitised to people’s tone of voice so it’s very, very important to keep this as warm, calm and respectful as possible. The GP journalist Dr Ann Robinson helpfully describes this as being the way we expect to be talked to by staff at John Lewis.
- Older people tend to lose hearing more in the higher ranges, so it’s important to speak slowly, at a normal level (not too loud), using a low-pitched voice rather than a ‘talking to kids’ higher pitch that it’s easy to fall into using. It’s not just a matter of avoiding sounding (and feeling and being!) patronising, but also of the patient actually being able to hear what you’re saying.
Sources:
VERA framework communicating with people who have dementia, by Blackhall A et al
Commitment to the care of people with dementia in hospital settings, by RCN https://www.rcn.org.uk/__data/assets/pdf_file/0011/480269/004235.pdf
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