Monday 26 October 2015

Repetition, repetition, repetition

One of the symptoms of dementia that those around the person with dementia find most difficult to cope with is repetition. Families and professionals alike often express frustration, leading onto exasperation, which often ends in irritation and possibly even an argument with the person who has dementia.

Repetition is a very common symptom of dementia. My dad went through a stage of repeating the same questions, and as his communication ability diminished the repetitive questions were replaced by saying the same words or phrases over and over again. To begin with those words or phrases would sometimes bear some correlation to the situation or conversation going on at that time, but as the years went by they became completely random.

The patterns of my dad's repetitive speech often left me wondering what message he was trying to convey to me, and that is arguably one of the most difficult aspects of repetition for the people around an individual with dementia. You desperately want to unravel the meaning behind their words and respond to that with an answer that provides the reassurance they may be looking for, but without being able to move the conversation on the prospect of finding a resolution that gets to the heart of what the person with dementia needs or wants becomes a distant one.

As someone observing a loved one's life with dementia, it is impossible to truly know the impact of repetition on the person who is living with dementia. I would suggest, however, that many of the feelings that a carer is experiencing (frustration, exasperation and irritation) are potentially also being experienced by the person with dementia too. The difficulty for the person with dementia is that they don't necessarily have the ability, either verbally or through physical demonstration (body language or expression), to make those feelings clear. That puts them at a distinct disadvantage to those of us who are family carers or care workers.

It's interesting that as a carer of a person with dementia, the carer's feelings are often seen to be somehow different from the person with dementia, but the emotions that go alongside coping with repetition - as with so many other symptoms of dementia - can be remarkably similar for the person with dementia and those around them, giving us more in common than we often realise.

Developing coping mechanisms is a key attribute for a carer, because so many people simply don't cope well with constant repetition – examples of coping methods include taking a quick ‘time out’ or deep breathing exercises (these may sound trivial, but they do work for some carers). Patience is another key attribute. I’ve never yet seen or experienced a resolution to a person’s constant repetition by losing patience with them. Yes they may have asked what the time is, requested the toilet or questioned when the next mealtime is on 20 occasions already, but getting angry is unlikely to prevent the next 20 requests. Equally, telling the person that they’ve already asked that question or said that statement isn’t likely to help end their repetition because they may very well not remember what they said previously.

Of course it’s easy to say ‘exercise patience’ – repetition can be incredibly mentally draining to both listen to and constantly respond to  – but alongside patience there are other techniques that can be helpful, although I’d stress that as each person with dementia is an individual, what will work well for one person won’t necessarily have an impact with someone else. 

Techniques to try include:

Embedding your response: Persistent questioning about the time can sometimes be resolved by providing a ‘dementia friendly’ clock or similar item, enabling the person with dementia to track time themselves which helps facilitate their independence. Coupling that with a day-by-day board that enables the person to track what is happening when can help with questions about daily events, like mealtimes, whilst good signage can assist with enabling the person to go to the toilet independently without having to ask. However, visual aids only work if the person has good vision and the cognitive ability to absorb what they are seeing, so make sure this is checked – move to audible reminders if hearing is a stronger sense than vision. Likewise, if the person doesn't have the mobility to meet their needs (like going to the toilet), then your help will always be required.

Distraction – Changing the conversation: Some carers successfully use distraction techniques to move the conversation away from whatever the person with dementia is repeating and towards something else. This can work, although sometimes moving away from a topic causing repetition can then mean that wherever you steer the conversation to next will become a topic for repetition.

Distraction - Activity: Introducing an activity, be it something to do with daily living (“Let’s make a cup of tea,” or “Let’s do some housework.”) or a hobby that the person enjoys, can be helpful in taking their mind off whatever the topic is of their repetition. Offering the right activity for the moment is key here, and may need to be something more energetic, like going outside or making the bed, or could be something much more sedate, like reading a book together or singing songs.

What I personally wouldn’t advocate is ignoring the person. Some people use this as a technique in the belief that the person with dementia will simply give up the repetition when they don’t get a response, and by responding you only fuel repetition further – a bit like the parenting technique where you leave the child to self-sooth. However, in relation to dementia I dislike this as a technique because apart from anything else it feels disrespectful. It also does nothing to increase the person’s trust in those around them, doesn’t encourage their independence in any way (even though it may be used in the false belief that it does increase independence), doesn’t help to meet any unmet needs that they may have, and runs the risk of something vital being missed.

The risk, when repetition becomes very monotonous and wearing is that a carer becomes so immersed in coping with it that vital clues are ignored, which might result in an episode of incontinence or not recognizing when something is wrong with the person’s health. When repetition takes the form of answering yes to every question asked, or no to every question asked, it might seem reasonable (and easier) to take those answers at face value, but it may simply be that the person is repeating an answer because that’s their current pattern of repetition, rather than because they really intended to give that answer.

This doesn’t mean that the person with dementia is being untruthful, it’s just how their dementia is manifesting itself at that time. Always be alert that an answer on a key issue, like how a person is feeling in relation to their health, should also be accompanied by the carer observing the person to make sure vital opportunities – for example to spot the deterioration of an infection - aren’t missed.

One final key point about repetition is that it is rarely static indefinitely. What is the sole topic of repetition one week can easily change the next week, and sometimes repetition stops as suddenly as it began, in the same way that many dementia symptoms come and go. When all else fails, responding with soothing kindness will at least ensure that you have tried to alleviate any distress being felt, and that you have appreciated the key point that the person with dementia may be feeling just as unhappy about their repetition as you are.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 12 October 2015

Terms of endearment – The ‘darling’ debate

A couple of months ago the Care Quality Commission (CQC) released a report detailing an inspection of a care home in Harrogate where the language used by staff when communicating with residents came under the spotlight. Care home staff had been using terms such as “sweetie”, “darling”, “handsome” and “love”, and the inspection team were concerned about these being “demeaning and patronising”.

Since then plenty of people have weighed in with their opinion on the use of terms of endearment in social care settings, and I’ve been fascinated at how polarised viewpoints have been on this issue. Some people feel such terms introduce welcome informality and infer kindness and compassion, whilst others have found them offensive and disrespectful.

Given that my dad spent the last nine years of his life in three different care homes, he and us as his family gathered plenty of experience in the different ways staff addressed dad. These ranged from the formal ‘Mr Britton’ and the less formal use of his forename, all the way through to calling him “uncle”, which was intended by staff as a term of endearment.

I can’t say what dad thought of the different ways in which he was addressed, since he never spoke to me about them or reacted differently depending on how he was addressed. I personally never had a particular issue with any of the ways in which he was addressed, which starkly contrasts with other usage of language that I really did have a massive problem with.

The term “change your nappy” when referring to changing dad’s incontinence pad was amongst the phrases I loathed the most, and something I touched on in my blog post R-E-S-P-E-C-T. This to me was a grossly inappropriate use of language, and interestingly given the largely overseas workforce was a phrase actually used by an English care worker, so it certainly wasn’t a case of inadvertently misunderstanding the meaning.

Ultimately of course, all use of language comes down to what the person being spoken to feels comfortable with. I can’t imagine many older people in a care home would want their incontinence pad to be described as a nappy, but I guess it’s possible that some people MIGHT find that phrase familiar to them and be comfortable with it. I just felt my dad would be extremely offended and it was entirely inappropriate for him.

The same of course is true with terms of endearment, and this was the point so clearly illustrated in the fallout from the CQC report. Whatever someone prefers to be called is what they should be called - individual preference should override any viewpoints staff or indeed inspectors have. But the key point here is choice. 

It’s vital to prominently document how someone likes to be addressed from the moment they enter any type of residential care. This should be known by all staff, including any agency staff from the beginning of their shift, and we should never make assumptions. Shortening forenames isn’t something everyone will like – a gentleman called Jonathan might not want to be called John. The formality of calling someone Mr or Mrs may make them feel uncomfortable… or it may be exactly how they want and expect to be addressed. A person may prefer the use of a middle name, or even prefer a name that isn’t associated with their given name at all.

Then of course there is this tricky area of terms of endearment. In some parts of the UK, especially more northern parts, terms of endearment are commonplace amongst the population and are likely to be heard everywhere from shops to hospitals, with many people finding them reassuring and comforting, like the familiar taste of regional foods or beverages.

But they will never be to everyone’s liking. I’ve been called “love” and “darling” before and not minded, but I wouldn’t appreciate being called “duck” for example. Care providers, no matter how heavy their workload, have to ensure that all individual preferences are catered for and not strayed from, no matter how easy it might be for staff members to revert to what is most familiar to them. In the end, it’s all about person-centred care and that begins from the very first interaction.

Of course staff will never get it right all of the time, that’s human nature and a rare slip of the tongue is forgivable, but it is perhaps worth reflecting on the following. Many people who move into residential care feel they lose a huge amount when they make that move, but to lose your right to be addressed as you would want to be is something no one should ever lose.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886