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Tuesday, 14 February 2017

The thorny issue of mental capacity

(A note before I begin this blog: You should not consider anything written in this blog as legal advice for you or anyone you care for).

I've long thought about writing a blog on mental capacity for people with dementia, but two factors have put me off. Firstly, mental capacity is not an area of expertise for me. Secondly, most people (apart from those who are experts in this field) switch off at the mere mention of it - I know, I've been one of those individuals who have glazed over.

But bear with me, and this blog post. I want to explore three of the five principles of the Mental Capacity Act very much as a lay person, a former carer to my dad, and a person who believes strongly in the abilities of people with dementia to retain control over their lives.

For those not familiar with the five principles of the Mental Capacity Act, here they are: 

1) A person must be assumed to have capacity unless it is established that they lack capacity

2) A person is not to be treated as unable to make a decision unless all practicable steps to help him/her to do so have been taken without success 

3) A person is not to be treated as unable to make a decision merely because he/she makes an unwise decision

4) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his/her best interests

5) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the persons rights and freedom of action
 
Principle number one intrigues me from the outset, partly because despite the Mental Capacity Act having been law since 2005, most people who aren't aware of the principles of it assume that the moment a person is diagnosed with dementia they do not have capacity. The old phrase, "They've lost their marbles," springs to mind.
 
What I would say is that in my experience, not just with my dad but through meeting many other people who are living with dementia, mental capacity isn't a one-size-fits-all. Each individual retains their own level of capacity at any given point in their life with their type of dementia, and another person with exactly the same type of dementia who is believed to be at the same 'stage' (I wrote about 'stages' here) may have a very different level of capacity. Capacity is, therefore, completely personal.
 
Moreover, capacity is often a fluctuating state. So, for a person with dementia who has suddenly contracted an infection, their own usual capacity may be temporarily diminished, but when the infection has cleared, they may return to the same level of capacity that they had before. Even having a sleepless night might render a person to temporarily have a reduced level of capacity - as a mum to a 14 month old, I can certainly appreciate the effect of sleeplessness, and I am an otherwise healthy person who isn't living with dementia.
 
Other factors can play havoc with capacity too - for example, a person with vascular dementia who has had a new TIA (Transient Ischaemic Attack), a person with chronic pain (which may be undiagnosed), a person who's had a fall that's shaken them up, or someone with poor levels of nutrition or hydration. For all these reasons, and many more, it is vital that it's never assumed that a person lacks capacity today just because they (maybe) did yesterday.
 
The second principle regarding practicable steps is also an interesting one. Again from experience, I know that the idea of practicable steps varies hugely depending upon who is trying to ascertain if the person has capacity. It's very common to cut corners here, and simple steps to improve the person's ability to demonstrate their mental capacity can be overlooked. For example:

     Not considering if the person needs to be wearing hearing aids or glasses in order to communicate more effectively

     Whether the environment is appropriate for the person (Too busy or too noisy)

     Whether the person is comfortable (free from pain, not hungry or thirsty, no illness)

     Whether the person has had the medication that they need (or indeed if medication is affecting their abilities through undesired side-effects)

     Whether the right language is being used (is English the person's first language?)

     Whether the assessor has the right abilities (eg: To speak clearly and form a trusting relationship with the person who has dementia).

Finally, the third principle fascinates me, since the whole idea of an 'unwise decision' takes us into the territory of risk taking, something that I've written about in the past as being an area of dementia care and support that is often unduly and unfairly restrictive. Risk aversion is a huge issue, sometimes for the right reasons if someone's life is in danger, but often it's far more low level and about creating circumstances that work well for those providing care and support but considerably less well for the person with dementia.
 
That last point, more than any other, is probably behind why I've come to see the Mental Capacity Act, much like the Human Rights Act (which is gathering increasing interest and alignment with best practice in dementia care and support - see the work of Dementia Alliance International) as more than just dry legislation that isn't applicable to the practical world of dementia care and support.
 
Anything that helps support a person with dementia to maximise what they can do, rather than what they can't, is to be celebrated. If you do nothing more with the Mental Capacity Act than familiarise yourself with and practice its five principles, you will have gone some way to enhancing your understanding of people with dementia and refocusing your approach to providing care and support in a way that puts the person front and centre.
 
Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

 

Monday, 16 January 2017

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...
Beth x







You can follow me on Twitter: @bethyb1886

Monday, 12 December 2016

200 not out

I never thought I'd be writing this, but this post is my 200th on D4Dementia!

What began as a modest blog with an ambition to share some of the experiences (mostly positive) that we'd had with my dad during his 19 years with vascular dementia has taken on a life of its own, and despite all of my other work which arguably takes up more of my time now, I am still known very much as a 'blogger' and proud to be so.

As I've come to learn since 2012, blogging has an important role to play in dementia care and support. This blog has enabled me to share experiences that I would otherwise never have shared, and because it's freely available to anyone with a device and an internet connection it reaches people across the UK and beyond, something I couldn't do consistently through any other media.

I've learnt from tracking my audience that the posts you all like the most are the ones that give really practical advice, and if anything I'm mindful that I need to write more of those in the future. Helping people who are affected by dementia has always been my prime motivation in everything I do, and my blogging is perhaps the most accessible way that I can do that.

I also know from feedback that this blog is as loved by people living with dementia and their families and friends as it is professionals who, despite the raised profile of dementia and the increased focus on dementia training, still look to the internet to provide them with the information, advice and support that they need to do their jobs to the very best of their ability.

Amongst the millions of words I must have written for this blog, experience has taught me that some are more powerful than others. Sometimes a really punchy quote shared via social media is what ensures a blog post reaches the people it really needs to. It may be because the words express something that a person feels but cannot express themselves, the sensation of solidarity or comfort in what they've read, or because a quote sparks a thought or action that, ultimately, improves a service for people who are living with dementia and their families/carers.

So, in the spirit of sharing that's associated with this Christmassy time of year, here are some quotes from 5 of my 200 blog posts that give a glimpse into the passions behind my work:

“Everything my dad went through is there to inform, educate and influence others – I believe he would have wanted to make a real and lasting difference, and I hope that will be his legacy.” From ‘My dad’.

 

“If you had to be isolated, unsupported and fight the system, would you apply to be an unpaid carer?” From ‘The carer’s job description’.

 

“Dementia takes so much from a person, but anyone who treats an adult like a child takes far more.” From R-E-S-P-E-C-T’.

 

“Above all else, remember this: care homes are for caring, prisons are for punishment.” From ‘From care to catastrophe’.

 

The only true representation of each person’s unique experience of living with a diagnosis of dementia is from that person themselves. Anything else is a substitution.” From ‘Why don’t we listen to people with dementia?’


So, what next for D4Dementia? Given the growth in other areas of my work I've decided to abandon my strict fortnightly Monday publishing regime and be a little more unpredictable in my blog posting. There will be at least one blog a month, but beyond that, I reserve the right to be spontaneous, not least because this gives me the option to react to news stories in a much more timely way. To make sure you never miss a blog, sign up to receive them into your inbox (you can do this via the box near the top of every page of D4Dementia) or follow me on Twitter or Facebook.

As a result of my new routine (or rather throwing the routine out of the window!), it will probably take me a little longer to reach my next milestone of 300 posts (my 100th blog was published on 13 November 2013), but I have every intention of reaching that magic 300 and going beyond it. Will I run out of things to write? I doubt it!

Wishing you all a wonderful Christmas and New Year. Thank you for your amazing support in 2016 - Here’s looking forward to 2017!

Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

Monday, 28 November 2016

The art of gentleness

Earlier this month I found myself in the honoured position of being a judge for a care awards event. As judges we had six categories to review, and there were some amazing testimonies of the care and support dedicated social care staff had given.

Amongst the many pieces of supporting evidence we reviewed, one short testimony from a lady who was 101 years-old made me think. She commented on how this particular care worker was, "Very gentle and caring."

It struck me instantly that we don't talk anywhere near enough about gentleness as a quality. It’s perhaps taken for granted, a 'given' that everyone providing care and support will be gentle, but gentleness has many facets, and can mean many different things to different people.

My idea of gentle and yours may be very different. How a sensitive person, who feels pain easily, might interpret gentleness is going to be different from a person with a high pain threshold who's always been pretty tough with themselves, perhaps from doing a hard physical job.

How health and social care professionals interpret gentleness is also going to vary immensely. Someone might believe they are being very gentle, when in actual fact the person in receipt of their care or support may feel very differently.

Sometimes gentleness is lost when time is short, there are multiple tasks waiting to be done, our minds are elsewhere, or if a person we are trying to help is verbally or physically unhappy with us. None of these are excuses, just the facts facing many professionals.

In training, gentleness is rarely mentioned. We talk about being person-centred, about compassion and kindness, but gentleness is mostly just assumed. Can gentleness be taught? If you mentor someone with the right aptitude and values closely enough, showing them what a gentle touch and gentle movement is, then some element of learning can happen, but you cannot physically become someone else’s hands so there will always be an unknown quantity of how gentle that person is actually being.

But of course gentleness isn’t just about the physical, however much it is associated with our actions and how we utilise our own physical strength. Gentleness in how we speak, behave and respond emotionally to a person is absolutely vital, but even less thought about than physical gentleness. A short, sharp response to someone, perhaps because we’ve answered their question numerous times already today, or an insincere tone in our voice can hurt someone who is emotionally sensitive.

Emotional sensitivity may exist because the person has always been predisposed to it or because they have an existing mental health condition. It may be a one-off because they are a having a bad day or it may be as a result of living with dementia. Whatever the cause, however, the need to be gentle on the mind is ever-present.

One of the wonderful things about us as human beings is our ability to feel acute emotional responses. Granted, it can be a double-edged sword, but it also opens up a world of feelings that is virtually limitless. When we provide care and support for a person, it’s crucial to be aware of everything about our approach, and consider not just what we say, or don’t say, but also how we say it.

Much like physical gentleness, we may not see anything wrong in snapping an answer, gesturing dismissively with our hands, or responding to a request with delaying tactics (for example, asking the person to sit and wait rather than address their need) – after all people do it to us and we don’t think anything of it. But these are not examples of gentleness, and the person on the receiving end may feel hurt, unwanted or unimportant.

Vitally, these feelings may not be visible to us, therefore we may not even consider that we’ve caused them. One of the great problems with the abandonment of gentleness is that its effects are often completely unseen. They strike at the heart, but the most sensitive people who experience them will often keep them locked in their heart. The result is as harmful as a lack of physical gentleness, just without the bruises to prove it.

I would urge everyone working in health and social care to consider what gentleness means to them. When you think you are being physically gentle, try and go down a notch or two more on the gentleness scale, being even more gentle than you have previously been, and see how the person responds – they may be more comfortable, happier and more secure in your company.

To be gentle on the mind, take a moment to think about your interactions. Draw breath before you dive in with whatever you were going to say or do. And never assume it is only women as the ‘fairer sex’ who need physical and mental gentleness. Men do too, particularly when they are more vulnerable as a result of living with dementia.

Until next time (which will be my 200th D4Dementia blog!)...
Beth x







You can follow me on Twitter: @bethyb1886

Monday, 14 November 2016

Is your workforce person-centred?

This morning I spoke at a conference on the importance of knowing the person. My audience was predominately social care providers. My remit was to focus on real lives, drawing on my experiences of care in terms of the importance of knowledge and skills and with a strong message of person-centred-ness in all care.

Since so many of my blog readers are also social care professionals, I thought it would be worth sharing some of what I spoke about. But this blog isn’t just for social care professionals, it’s for families too. My understanding of what makes great person-centred care began in the years my dad was living with dementia, and despite all of the experiences I’ve had through my work since, the education I had from my dad remains unsurpassed.
© BETH BRITTON 2016

Since my dad’s passing, the rise in prominence of person-centred care has grown. Virtually every care and support provider will tell you that their care is person-centred. The danger with person-centred care being in the mainstream, however, is that huge variations now exist in how different providers interpret this.

Everyone thinks they deliver great person-centred care, but do they?


As part of my presentation, I shared three slides taken from the training that I devised for social care staff, particularly care home staff, that is based on my personal experiences and designed to help staff understand more about the practicalities of what person-centred care means. Some of the examples I use are very obvious but don’t be fooled by the simplicity. The most person-centred organisations I know realise that EVERY little detail matters.


To explain the many facets of person-centred care, I like to begin with the obvious physical differences between individuals, picking up on their appearance and personal effects. But I also talk about interpretation beyond the physical characteristics. Think expression, personality and history as just three examples.

Expanding more into everyday life, it’s vital to understand the role of a personalised environment and appropriate communication. Beyond that, the key question is how each individual's qualities, interests, preferences, abilities, needs and aspirations are supported. Maintaining skills, a sense of purpose and the enjoyment of achievement is vital for all of us, but for this to happen in care environments staff need to believe in it and make it happen. In dementia care especially we talk about entering the person’s world, but in reality this is vital to achieving person-centred care for any individual.

I know from my experiences of delivering my training that staff sometimes wonder how being person-centred is going to benefit them. Their bosses might argue that their staff aren’t at work to benefit themselves, they are there to provide care and support for the people accessing their service. But if we don’t look at how being person-centred enhances the knowledge and skills of staff to help them feel a sense of achievement and pride in their work then we are making a big mistake.

When staff struggle to support a person who is living with dementia because that person is experiencing symptoms associated with their dementia like confusion, anxiety, emotional outbursts or repetition, being person-centred in their whole approach can not only halt the escalation of these symptoms, it can change the feelings, perceptions and motivation of staff. They don’t leave work feeling baffled and as if they’ve failed the person, but instead are able to reflect on how their response helped the person, and how they might refine that response further in the future to enable an even more positive outcome.

© BETH BRITTON 2016
Ultimately, though, it would be wrong to talk about person-centred social care and not address the culture and leadership of organisations. It’s no fluke that every CQC ‘Outstanding’ rated adult social care provider is well-led.

Sadly, I’ve seen too many care homes where Joseph White is supping his morning coffee (that should be tea), eating a digestive (that should be a custard cream) wearing the vest belonging to Margaret Ross (but Margaret’s a large lady and she’s got plenty so it’s fine – it isn’t), while Joan Ellis is listening to Frank Sinatra (even though he’s her least favourite member of the Rat Pack – she’s a secret Sammy Davis Jn fan. Oh and by the way, she’s mumbling about being cheated on and fighting with a man because she is remembering headlines of Sinatra’s stormy personal life). Meanwhile, Edward Lewis is pacing the corridor, wanting to fix engines but being told to sit down and have a nice glass of juice (only Edward hates ‘juice’ because he knows it isn’t real orange juice, just watered down squash).

The challenge for every social care provider isn’t just knowing, and by knowing I mean REALLY knowing, the people they are providing care and support for, but knowing their workforce too. Joseph, Margaret, Joan and Edward could just as easily be employees that a social care provider doesn’t treat in a person-centred way as they could be residents or clients.

Complacency is the enemy of person-centred care. Recruiting staff with the right values and ensuring they complete e-learning modules on person-centred care isn’t enough. Authentic and embedded person-centred care is cultural, organisational, and comes from the very top and pervades down through every employee no matter what their role or responsibility.

So, my challenge to every social care provider reading this blog is:

Embed observation and responsiveness into your leadership. If you think you already have, do it again, evaluate and keep evolving the leader you are, and the expectations you have of everyone in your team.  Just as no two days with my dad during his years with dementia were ever the same, so the knowledge and skills needed to be a truly person-centred social care provider never stand still either.

Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

Monday, 31 October 2016

How dementia and personality interact

We talk A LOT in dementia care about how dementia changes a person. Often it's distilled down into very negative language, and bracketed as 'challenging behaviour' (a phrase I dislike immensely). Yet, the spectrum of change is immense, very personal to each individual, and definitely worthy of far greater exploration and understanding.

Part of the reason that I think so many people struggle with the personality changes associated with dementia is you can't 'see' them in the way you can see a physical problem. Whilst physical changes can be very distressing - for example if a person becomes immobile, loses weight, loses teeth, wears a catheter or needs help to eat - we associate that type of change with a need to care for that person, helping to minimise any discomfort and keep them as well as possible.

Personality changes in the general discourse of life are bracketed under the 'mental health' banner, and as such have an additional stigma attached to them, before you even add in dementia as a factor. We also make a lot of assumptions when associating personality changes with dementia, most notably:

   That the person with dementia has never experienced this type of change before. Are we really sure that in their whole life course to this point that they haven't had times when they've been emotional, depressed or angry? They may have concealed these feelings from others, even people very close to them. The difference may be that now they’ve developed dementia, they find it harder to conceal these elements of their personality.
 
   That every person who develops dementia was a 'nice' person before they developed dementia. It may be unpalatable to admit it but we are all different, and some people just don't get on with other people of contrasting personalities no matter how much we might want them too - be they other residents in a care home, health and social care staff or even their own family. That, as they say, is life.

Personality changes can be temporary or permanent for a person with dementia, depending upon  the damage to the person's brain (for example a stroke may mean an instant change for a person), the type of dementia they have (for example people with a form of frontotemporal dementia may have more pronounced personality changes), and other factors such as who is around the person (the company of some individuals may trigger different reactions), their environment, other health conditions, side-effects of medications, and even issues like changes in the seasons (increased darkness in winter for example) or memories of certain times of the year, events, people or places.
 
Personality changes encompass as many differences as you can imagine. Examples include:

    A previously relaxed person becoming very anxious or angry (or vice-versa).

    A previously more detached person becoming much more emotional (or vice-versa).

    A previously tough person becoming a lot 'softer' and showing their feelings more (or vice-versa) - This was true for my dad.

    A previously private person becoming more of an exhibitionist (or vice-versa).

    A previously tolerant person becoming intolerant (or vice-versa).

You may recognise someone you love, or yourself, as having undergone such a change, even a more subtle one, as a result of developing dementia. What I think those of us without dementia, and particularly family carers and health and social care professionals, need to understand is that:
 
   Change is ok, even changes that we perceive as difficult. The more we worry, try to correct, mourn and yearn for the person 'as they were' the harder we make it for the person with dementia and ourselves. Adjustment is hard, I know that only too well, but failure to adjust is harder still.

   If we can adapt our approach and interactions with the person, we have the ability to offer the mental equivalent of what I wrote about above in relation to physical changes, namely to; "Care for that person, helping to minimise any discomfort and keep them as well as possible". Examples of how to do this are through person-centred care, life-story work, reablement, occupation, sensory therapies (including touch), making spiritual connections, music, our approach to personal care, and even by something as simple as modifying the way we communicate.

   Don't automatically view medication as the answer - often the first resort for any 'negative' personality changes is to assume that the person is depressed and put them onto anti-depressants. Medication may be suitable in a few situations, but generally the answer is greater understanding, care and support on the part of those around the person. Again, it goes back to the points about adjustment and adaptation.

Every day can, and often is, very different. Sometimes the changes in a person's personality may be more, or less, pronounced. If they become less pronounced, you may feel like the person is 'returning to their old self', only to see the 'reversal' of that the next day, week or month. It can seem cruel, and is a fertile breeding ground for the 'blame game', where the person with dementia, or a carer or family member, feels such changes very personally. If changes can be linked to a particular aspect of the person's life, then mitigating against that trigger could obviously be very beneficial, but sometimes there is no apparent 'reason' apart from the unpredictability of dementia.
 
During my dad's latter years with dementia I saw him cry more than I had in all of the years prior to that. I saw anger and anxiety too, which I wouldn't have associated with my dad prior to his dementia. With the power of hindsight, however, I can also see reasons for these differences in him, ways in which I, and others, may have contributed to them, not to mention environments like hospitals and care homes, and some medication he was given.
 
That's not to in any way exclude how vascular dementia affected my dad's brain - so much of what he experienced was, from the perspective of the physical changes in his brain, beyond our control. Coming to terms with that, whilst trying to provide the very best care and support you can, is a balancing act that is as fine as any personality change can be.
 
Until next time...
Beth x







You can follow me on Twitter: @bethyb1886