Routine, routine, routine

With a New Year often comes resolutions to change our routines. Things we've always done, that perhaps aren't so good for us, are intended to be banished in favour of routines that are healthier or that we perceive are better for us in some way.

Routine is in sharp focus for me since becoming a parent - the deluge of 'advice' on the best routine for your baby can be pretty overwhelming, and we decided before our daughter was born that we were going to do things our own way, responding to her as the individual that she is. To this day, we still don't own a 'baby book' that attempts to 'train' our child like a mechanical doll!

It's this parenting experience that has inspired me to think about how routine is perceived for people at the other end of the age spectrum, and particularly people who are living with dementia. The majority of professional 'experts' seem to be in favour of supporting the person with dementia to retain their own personal routine - that is until the person needs inpatient hospital care, or indeed residential social care, in which case their routine is mostly thrown out of the window and replaced with whatever the institution believes helps them to run their services most efficiently.

Whenever I've been asked about routine, I've generally advocated for the person's own routine to be maintained and protected to give the individual continuity. As so much changes for the person with dementia, this seems a sensible way to help the person to remain grounded in something that feels familiar and that gives them the best chance of maximising their independence. Most people I know who are living with dementia generally say that their routine is vital to their sense of wellbeing and ability to cope.

But there is one very important caveat. Be guided by the person. As family carers, or health and social care professionals, we should never be so wedded to keeping to what we perceive is the person's routine that we become oblivious to the person trying to change their routine. Often, if a person with dementia begins to stray from their 'normal' routine, we at best look to guide them back to it, and at worst become so obsessed with the routine that we berate the person for not adhering to it and try to forcefully pull them back into it, regardless of whether this is what they want or not.

It's the routine. It's how it's always been. It cannot change. Ever.

Except that this is tantamount to trying to fit a square peg into a round hole. It doesn't work. Routine should never become a watchword for control. For some people routine is vital, for others less so, but regardless of how the person has historically run their life they are completely at liberty to change that now. Just because the person is living with dementia doesn't mean that they don't know what they want.

Living with dementia may mean that the person can't necessarily find the words to explain what they want, and through our bombardment of communication, questions and nagging, may become so worn down that they either just give in - which could lead to feelings of worthlessness or depression - or fight back, which is commonly labelled by the ill-informed as 'challenging behaviour' (a term I dislike immensely).

As individuals providing care and support, we have to have the courage, however hard it might be, to take a step back and ask ourselves:

•     What is the person trying to tell us?

•     Have the person's needs changed to a point that their 'old' routine no longer works for them?

•     Is there something about when the person wants to eat, sleep, wash or go out that is different because they are trying to respond to what their body is asking them to do? (We are not wired up to their brain or their body, and we cannot ever REALLY know what either is telling the person to do).

•     Does the person want to change their routine just because they can? For a person not living with dementia, this might be positively packaged up as an 'important life change', a 'New Year's resolution', a 'health kick' or some other such celebrated deviation from the norm. Why when a person with dementia wants to change things is the reaction so often to throw our hands up in horror and declare that this won't work and shouldn't happen?

So often I hear from families, or health and social care professionals, who feel that there must be something intensely wrong with the person for changing their routine.

·     Is this a sign that the person's dementia is progressing? Maybe, maybe not. What is it a sign of is the person wanting control over their life, of having the ability to follow what they feel is right for them and the confidence to do that. So not an entirely negative turn of events.

·     How can I stop this? It's a type of arrogance to believe that you can or should. To take away choice and control is to condemn a person with dementia to a life that disempowers them and is completely counterproductive to what you should be wanting to support, which is to enable the person to live as well as possible with their dementia in a way that makes sense to them.

·     What can I do? You can support the person to find a new routine that works for them. That may be one set regime that they like to follow, or it may be a movable feast where every day is a little different. Yes, that can be hard to predict and more difficult to support than the one fixed routine, but it's about what the person wants and needs and they are the only real arbiters of that.

Until next time...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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Lessons from my virtual world

Earlier this month I experienced the Virtual Dementia Tour for the first time. Along with 24 people who work in social care, we went through the tour in pairs, with most of us then observing others on the tour. The results weren’t exactly surprising to me – we all experienced ‘dementia’ differently, and were united in feeling very unnerved by the realism of the tour.

Ours was just a snapshot of this product, and yet for many people it was a very long 10 minutes. I for one hugely disliked the constant noises I had to listen to and the way in which my senses became distorted. Reflecting afterwards, however, has produced perhaps even greater insight than those 10 minutes of ‘living with dementia’.

My naturally practical side immediately kicked in once I began the tour; I was determined to illuminate my new reality and then find a task to do. I couldn't hear the instructions at the start of the tour due to the noises being played into my ears, so I decided to set about accomplishing the only task I felt fit to perform, regardless of whether that was the task I was actually charged with completing.

Thus I began to fold clothing and linens, putting them into relatively neat piles, a task I regularly do at home so it came naturally to me. In the feedback I had about my tour, I am reported to have stomped around (I’ve been accused of doing that thundering up and down the stairs at home), made small noises (not uncommon for me, I’m the master of a whole range of small noises to voice everything from irritation to happiness), sniffed a lot (I’d only just got over a heavy cold), jumped at the loud noises (very common for me) and been territorial over the folding (again not surprising, I’m a bit of a perfectionist).

So, despite experiencing some very unpleasant sensory disturbance, I drew upon many of my natural personality traits and gravitated towards familiar tasks in order to cope, and apparently once I became immersed in the folding I was significantly calmer. So what do we learn from this?

Lesson 1) People with dementia are still people, they are not a disease or a raft of symptoms – their personality, likes and dislikes remain with them.

Lesson 2) People with dementia can still achieve things, and they want to achieve things.

During the tour, I did something that the trainer said only one other person in the UK had done since they had been delivering the training over here. I won’t tell you what it was in case you are planning on taking the tour, but in conversation with the social care workers afterwards, the feeling seemed to be that I’d acted differently to most people precisely because I’m not a professionally trained social care worker.

Lesson 3) Does the way in which we educate our professionals really reflect lived experience? Personal experience of dementia is invaluable in helping to produce care and support that is actually caring and supportive for people with dementia.

The fact that so many of the people on the tour found it eye-opening was a great testimony to the effectiveness of the product, but it does make you wonder how many other social care professionals lack insight into dementia and yet deliver frontline care and support every day.

Interestingly for me the tour, rather than being an insightful experience, was actually a reassuring confirmation that everything I’d believed in for my dad’s care, and that I now champion through my work, is very much best practice. Examples of this would be:

Lesson 4) Constant background noise, especially from TV’s and technology, is very unhelpful for making people with dementia feel calm and relaxed.

Lesson 5) Giving a stream of instructions to a person with dementia isn’t likely to produce a positive result, and you can apply that to constant direct questioning too.

Lesson 6) Anyone is capable of behaviour not normally associated with them when they are living with dementia, including swearing or aggression. Don’t take it personally.

Lesson 7) Dementia naturally produces a different reality. We should not try to correct that but instead embrace it.

Lesson 8) People with dementia shouldn’t be restricted any more than is absolutely necessary for their safety and wellbeing. We must avoid being risk adverse, and care should never be controlling or about imposing our will on the person with dementia.

Lesson 9) Dementia is a serious, multi-faceted cognitive disease that could leave anyone aimlessly searching in a permanently unfamiliar place – we must offer kindness, compassion and support to make that search more bearable. 

Lesson 10) Communal living can be very problematic for people with dementia, and where it is necessary, specialist care is vital.

Lesson 11) We are all different and must be treated as the individuals that we are.

My only real criticism of the tour is that it gives everyone the same experience, the only differentiation is in how individuals behave when subjected to that. So, whilst it undoubtedly gives a great insight into an example of dementia, those taking it must be mindful of the huge variations in the different forms of dementia, and how different symptoms can be magnified or reduced for each individual.

Lesson 12) Many of the sensory issues you go through on the tour are related to what you can see and hear. It should be remembered that some people will live with dementia but have very good eyesight and hearing, whilst others may be completely blind and deaf (as I wrote about here).

Lesson 13) We were all fit and healthy individuals, but people who are living with dementia could have a variety of mobility and health problems that again will affect their individual experience. Consider how problems like immobility, incontinence or dysphagia would greatly affect how a person lives with dementia.

Interestingly, the trainer said that most people completing the pre-tour questionnaire answered yes when questioned about whether people with dementia got the care that they needed. I replied no to that question both before and after the tour. Why?

Lesson 14) Ultimately, however much we think we know about dementia, and however great we think the care is that we are providing, we can always do better.

Until next time...

You can follow me on Twitter: @bethyb1886

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Day-to-day with dementia

There are so many things in life that we take for granted, from the mundane to the critical, cruising through our daily lives wrapped up in our own world, largely ignoring what actually constitutes the foundations of day-to-day living. Take those things away from us, however, and suddenly we realise just how vital they are.

Think about the basics of life for a moment, like waking up in the morning in your own bed and knowing that it’s your own bed. Getting home from a day out and knowing that you are, in fact, at home and can enjoy that feeling of being comfortable and safe. Or seeing your partner, siblings, children or grandchildren and knowing exactly who they are and how you are related to them.

Recognition of places or people that form part of our everyday lives gives us grounding, a sense of belonging, of knowing who we are, how we fit into our family and where we can feel secure and be ourselves. Living with dementia has a tendency to change those key markers for many people, leaving them disorientated in previously familiar surroundings or struggling to recognise faces that have been part of their life for years.

Amongst the many symptoms of dementia, these are some of the most difficult for someone who is living with dementia and their family to come to terms with. The pain of seeing a loved one so lost and bewildered or struggling to work out who is in front of them is heart-breaking. For the person with dementia, however, it is likely to be even worse.

In the earlier stages of dementia, when a person often still has a high level of awareness, that desire to show those around them what they can do and prove that they are still their own person is huge. Anyone feeling like they’ve lost control of their life is always going to want to claw back that control, and not being able to feel comfortable in a place that you are told is home, or indeed amongst people who are apparently your nearest and dearest, would elicit feelings of confusion, sadness, frustration, anger and utter misery on the best of us.

Not being able to recognise a place that has been your home for years, to the point where you can’t even find your way to the bathroom when you need the toilet, is likely to feel degrading and humiliating. Worst still, if the place you are being told is home doesn’t feel like home, all those comforts that we associate with being in our own space are lost, and you potentially then feel permanently on edge, unable to relax or conduct normal activities.

If you are already struggling to remember how to have a shower so that all of you comes out clean, or get dressed in the right order (with co-ordination, appropriateness for the occasion and comfort in mind), make a cup of tea (in a cup, with boiled water and the right amount of milk and/or sugar) or turn the TV on and find your channel of choice, your environment will feel even more alien. A bit like living in a hotel that you found when you were lost, where you’ve no idea how anything works, haven’t packed the right things, don’t want to bother anyone by asking (since you then feel like a nuisance) and can never leave. Suddenly it makes a stay at Fawlty Towers* look quite appealing!

When it comes to knowing who the people around you are, it’s an even more terrifying prospect. From time-to-time we all struggle to put a name to a face, but when it’s the people you grew up with, those you have lived with for years, the children who you bought into the world or the grandchildren you lovingly cradled, life can feel very desolate.

Not being able to recognise family members can have far-reaching consequences too. You might have woken up next to your partner for the past forty years, but if the day comes when you wake up next to them and have absolutely no idea who they are, or where you are, you are likely to feel terrified or angry. Many a call has been made to the police by a person with dementia who cannot recognise their surroundings or the person that they are with, and as such are feeling in danger or believe that they are being held against their will.

Without recognition of who someone is, or reasoning to assess a particular situation or the actions of a family member, accusations of improper conduct or criminal behaviour like abuse or steeling can be incredibly hurtful and mystifying for families. Paranoia is a common symptom of dementia, and something we experienced with my dad when he became convinced his neighbours were stealing from him. For the professionals who are often called in to investigate such claims, it can mean treading a very fine line as you try to discover if someone is paranoid as a result of their dementia, or is in fact trying to report something very real and potentially unlawful.

With all of these complexities of day-to-day life with dementia in mind, my advice to you today is to stop what you are doing for a moment, take in the familiarity of your home, the love of your family and the security that comes from these things, a security that those of us without dementia often take for granted. It is anything but mundane, it’s priceless.

Until next time...

You can follow me on Twitter: @bethyb1886

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*For non-UK readers, this is a 1970's British TV series