What to do for 'the best'

Last year I wrote a popular blog post entitled ‘Five things I wish I'd known before my dad's dementia’. Point two was entitled ‘What to do for the best’ and said:

"The great problem when my dad was living with dementia is that I wasn't a researcher, or an observer of all things 'dementia'. I never Googled what other people's dad's who were living with dementia really enjoyed. Nor did I attend dementia groups, access social media extensively, or read dementia books or blogs (so the fact that you are reading this means you are one step ahead of where I was!). 

I learnt what worked for my dad eventually but it was often through trial and error, and when I think back so much time was wasted. For example, I would never have persevered with ensuring my dad had TV in his room: in hindsight I would have scrapped the TV on day one and replaced it with the CD player and music collection that brought infinitely more joy to his life. I’d have made the environmental changes that personalised dad’s room much quicker, and the life story work staff asked for my help with and I took ages to dig out photos and make the memory box, I’d have done that quicker too. 

We'd buy things, like CD's, for birthdays and Christmases thinking it was nice to space out the gifts. Big mistake. Dementia is terminal, you are 'on the clock' as it were. Get as many lovely things as you can afford and enjoy every single one of them as soon as possible so you have them for as long as possible. My dad was never into big birthday or Christmas celebrations, and looking back maybe he was onto something with that."

I often receive emails from family members outlining their situation and asking me what to do for 'the best', and my ‘Five things I wish I'd known before my dad's dementia’ post prompted a few more of those emails, so here are my thoughts on what to do for 'the best':

Don’t beat yourself up

Wanting to know what to do for ‘the best’ is a really common feeling that most of us have in relation to a variety of situations. A natural human instinct is to want to avoid getting things ‘wrong’, but when I was growing up my parents always said: “He who never made a mistake never made anything.” There is no such thing as the perfect way to support a loved one with dementia, so don’t beat yourself up.

'The best' in your situation is unique to your situation

Whenever anyone asks me what is for 'the best' in relation to their loved one with dementia my opening suggestion is always to remember that ‘the best’ in your situation will be unique to your situation. My best, your best and everyone else’s best is entirely individual to them. This phrase really underpins that: “When you’ve met one person with dementia, you’ve met one person with dementia.” Ultimately, there is no definitive rule book on what the best care and support looks like - I was guided more by instinct than knowledge, and sometimes that’s no bad thing.

Sometimes a desire to do our ‘best’ can lead to our worst

Reading the accounts of people living with dementia in the last few years has made me realise that as care partners we can unintentionally become very caught up in the desire to do our ‘best’, sometimes stifling the person with dementia, disabling or disempowering them, which is far from 'the best' for anyone but hard to recognise when we are living in the moment. I’ve only really learnt this lesson as a result of following the work of empowerment groups like DEEP and DAI, realising the 'I'm doing this for the best' trap is easy to fall into and one I fell into myself with my dad sometimes.

As Wendy Mitchell says in her book, 'Somebody I used to know':

"They were one of those typical couples, the ones where the wife takes the lead; she takes his coat from his arms, she folds it over, sits him down, checks on him - once, twice - then goes off to fetch a cup of tea. I see it a lot, wherever I go. I know they're only trying to help, so why does it always look to me as if these husbands - or wives - are so much more advanced in their disease than me, someone who has no one to fetch and carry for me, to finish my sentences, to decide that I can't even manage the small chores that are still very much physically and mentally possible."

Being the best YOU can be is enough

I was by my own admission far from perfect in supporting my dad, but I was the best I could be, and I’ve realised since dad's death that you can be no more than that. When dad was alive the decisions came thick and fast, from small things to big things and everything in-between. I would constantly wonder, “Is this for the best?” about everything from signing a consent form to deliberating about medication, or taking the ‘risk’ of supporting dad to eat when healthcare professionals questioned if he could cope with anything orally due to his dysphagia. Comparing yourself to others, as I’ve known some relatives to do, will only lead to feelings of failure, or the opposite - an exalted view of how great you are at supporting your loved one. Neither is helpful. This quote sums it up perfectly:

Coping with the feeling you haven’t done your 'best'

Sometimes I run information and knowledge session for the relatives of people who are supported by care providers. These often involve a lot of sharing of our individual stories, and sometimes become understandably very emotional for all of us. One of the biggest contributors to not feeling you are doing or have done 'the best' for your loved one is when professional care and support is needed. My view: asking for help doesn't mean you're a failure. We desperately need to move away from the rhetoric that being a family carer means doing everything for your loved one, alone, for the rest of their life, no matter what. Doing your 'best' should never be a byword for burning yourself out.

Until next time...

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Delivering a dementia diagnosis

There are many times in a person’s life with dementia that are described as pivotal. Often these are the difficult, crisis occasions that create the negative narrative that is so commonly associated with dementia. But after my recent personal experiences of dementia in my wider family, I’ve found myself reflecting on what I feel is arguably one of the most, if not THE most pivotal moment in a person’s life with dementia - their diagnosis.

As I’ve written about many times, my dad’s diagnosis took ten years, involved a catalogue of missed opportunities, a crisis that could have killed him, and ultimately when we finally heard the words that he’d been formally diagnosed with dementia, they came when we visited him in hospital and found his bed empty. The nurse said he’d been moved to the Elderly Mentally Infirm (EMI) Unit having been diagnosed with dementia.

Fast forward 14.5 years and for most people in the UK things have improved. We now have memory clinics, and the voluntary Memory Services National Accreditation Programme (MSNAP) from the Royal College of Psychiatrists that involves regular peer reviews (I am an MSNAP Peer Reviewer). Multidisciplinary teams staff these clinics, bringing a wealth of different skills and experiences that are vital in giving patients the very best diagnostic experience.

But not everyone has the type of experience I’ve seen in some of the best memory clinics in England, and when the experience isn’t good the effects last long after the doctor has delivered their clinical judgement. Listening to the diagnostic experience one of my in-laws had in South Africa last year left me with a mixture of sadness and anger - no person should have such a poor experience given all of the best practice examples available from many different countries (including the UK), and bear in mind that we are talking about private healthcare here, where the person is the very definition of a consumer.

My feelings left me reflecting on what a good experience really looks like from the person’s perspective, and I want to share those thoughts with you for this, my first D4Dementia blog of 2018. Whether you are a person concerned you may be developing dementia and could be seeking an explanation for your symptoms in the coming months, a relative worried about a loved one who you may go on to accompany to diagnostic appointments, or a clinician responsible for any part of the diagnostic pathway, I hope this list will help you.

1)     The person must own their diagnosis

This is the singularly most important aspect of diagnosis. Dementia remains stigmatised, particularly amongst older generations who still remember the asylums and labels of ‘madness’ that may have formed their viewpoint of dementia many years ago. The person needs to be personally involved and addressed at every point in the diagnostic process, and when the final verdict is delivered, it has to be communicated to the person first and foremost, in the most appropriate way for that person and by the most appropriate clinician. Anything less than this and the risk of the person not believing or trusting in the diagnostic process and the outcome of it will massively increase, which in turn can have long-term ramifications.

2)     Family can help... and hinder

It’s often said that a dementia diagnosis isn’t just given to the person, but to their whole family and wider network. Whilst as a daughter whose father lived with dementia I would agree with that, there is always a temptation to involve family members in the diagnostic process more than the person themselves, sidelining the very individual who is potentially living with dementia. Clinicians often choose to speak to family members because it’s perceived as easier and the information being gathered is seen as more reliable. At best that’s insulting. At worst it pits family members against their loved one with dementia. Marginalising the person is likely to leave that individual feeling that everyone is ganging up against them, which is a recipe for destroying relationships at the very time when they need to be at their strongest.

3)     The diagnostic process must be fair and thorough

For a person to believe and trust in their diagnosis, the process must be comprehensive, transparent, never rushed and totally individualised. Attempting even preliminary investigations when the person is unwell with another condition or infection is, in my view, utterly unacceptable. The person must be at their best to know in their own mind that they are able to give of their best in tests. Equally from a clinical perspective, you want an accurate measurement of the person’s baseline or, if you are tracking from a baseline, an accurate picture of where the person is now. Diagnosing just to tick a box, earn a financial reward (as has been available in the past in England) or prescribe certain drugs is never, ever justifiable.

4) A few words that change a person’s life

I’ve been very lucky in my work with MSNAP to hear from many people living with dementia and their family members who’ve had nothing but praise for the doctors, nurses, therapists and advisors who they’ve encountered during their diagnostic experience. How the diagnosis is delivered is a key marker we look for during MSNAP peer reviews and with good reason. An empathetic clinician who delivers the news of a dementia diagnosis with kindness and clarity, tailoring the level of information to the person, understanding what a momentous moment it is for the person, and allowing time and space for their carefully-chosen words to sink in is a clinician others less adept in these situations could learn a huge amount from.

5) Don’t abandon the person and their family

I couldn’t write a blog about diagnosis and not touch on one of the aspects of dementia care and support that I am most passionate about - post-diagnostic support. Even when a diagnostic process has fulfilled all of the aspects I’ve outlined above, the weeks and months after the person’s diagnosis can leave the individual and their family feeling abandoned and having to cope alone. This is when the risk of depression for all concerned can exponentially increase, and life can begin to unravel pretty rapidly and most definitely not in the direction of ‘living well’. Accessing peer support (including through DEEP and DAI), carer support, making environmental modifications, exploring rehabilitation, reablement and therapies to combat distressing symptoms are just a few ways to ensure that a good diagnostic experience is followed by an equally positive post-diagnostic experience.

Until next time...

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When behaviour changes…

Last week I began a series of roundtable sessions with the staff of one of my social care consultancy clients looking at changed behaviour for people who are living with dementia.

The topics for discussion are pretty diverse, everything from verbal and physical aggression to repetition, paranoia and accusations, walking and restlessness through to anxiety, tearfulness and feeling emotional, wakefulness and disturbed sleeping, through to losing, hiding or hoarding objects/items and losing sexual inhibitions.

Whatever direction our conversations go in, the focus is on understanding and supporting the person with their symptoms, and if possible finding ways to alleviate those symptoms. I am completely against any references to challenging behaviour and the inevitably negative pathway that terminology leads us down.

I have written before about the need to understand that any behavioural changes a person with dementia is experiencing are most likely due to an unmet need. In essence, behavioural change is a way of communicating when trying to make yourself understood in other ways simply isn't possible because of your dementia.

The cause of behavioural changes can be physical (something happening in the person’s brain because of their dementia or another physical or mental illness) environmental (including within a previously familiar environment) or human (directly resulting from being in the company of a person or persons). Sometimes there is no obvious cause at all, which is why behavioural changes are so difficult for the person themselves to cope with, and for those around them to support appropriately.

Reverting to medication is, for me, the absolute last resort (See my blog on the 'chemical cosh'), and as understanding of dementia grows I hope that more health and social care professionals will embrace a care and support approach rather than a medication approach, and indeed families and people with dementia themselves will advocate ever more strongly for this.

As someone whose father was medicated with antipsychotics (and other sedating medication), I know first-hand how dad’s symptoms improved when that medication was removed. But what are the options if you want to take a care and support approach? My top tips are:

Person-centred support at all times 

The person at the centre of their care and support at all times might sound like a simple idea, but it still doesn’t happen universally. Pay particular attention to listening to the person and observing their body language - it will tell you a lot about how they are feeling. Empathise and understand, tuning into the person’s needs (either explicitly stated or what you can learn by reading between the lines), and reflect on your interactions - what have you learnt? What could you change?

Ensure the person has access to purposeful and meaningful (to them) occupation 

Occupation is many different things to many different people - it may be something personal to the individual (like a hobby or interest), it may involve being supported to care for themselves (For example, with personal care or when making drinks or meals) or it may involve doing things for others (For example, advocacy, volunteering, using craft skills to make useful items, befriending or peer support). Whatever occupation means to the person you are supporting, make sure they have the opportunity to pursue it to the fullest possible extent. 

An environment that is responsive to the person’s needs 

Environment is so often overlooked when thinking about supporting a person with dementia. A ‘dementia friendly environment’ may sound like a cute and cuddly phrase, but it’s actually really important, and it’s about a lot more than just signage and red toilet seats! If the person is disorientated in their environment, frustrated at being unable to navigate, feeling unsafe, confused, or angry as a result of their surroundings, it will undoubtedly feed into distressing behavioural symptoms for the person.

Preservation of the person’s independence and individuality 

When a person is diagnosed with dementia, the tendency is often to do things for them rather than with them. Big mistake! Involve the person in everything you are supporting them with. Avoid being risk-adverse, and give the person the opportunities they need to be themselves and to shine. Embrace the person's life story and everything that makes them who they are.

Ensure that the person isn’t experiencing any undiagnosed pain, symptoms of another physical or mental health condition or side-effects of medication(s)

Get concerns about other health problems checked out, being persistent with health professionals if necessary. Be particularly mindful of any pain problems, as these are often missed in a person who is living with dementia. Pain can be extremely debilitating, affecting the person’s whole outlook, and chances are it will be a contributing factor in any behavioural symptoms they are experiencing. Also be mindful of the effects of medication(s).

Support for the person’s wellbeing and positive relationships with the individual(s) involved in their life 

Never underestimate wellbeing. It’s a barely understood word (which means to be comfortable, healthy and happy) that can have big implications when a person with dementia isn’t experiencing it. Equally, fractious relationships (which are common, particularly in family situations) are very counterintuitive when it comes to supporting behavioural symptoms. For family members in particular, being aware of how to improve your own wellbeing and participate in healthy relationships is as important as focusing on these aspects for your loved one. If you project a positive approach (For example, I endeavoured - although didn't always succeed - to never to cry in front of my dad) that will rub off on those around you.

Of course, in a perfect world everyone’s care and support would follow these principles. If it did, many of the changed behaviours that are associated with dementia would be greatly reduced, and for some people, barely noticeable at all. Perhaps then, the greatest tip of all is to say that it’s never too early to begin these good habits. Waiting until the person you are caring for is living with behavioural symptoms associated with their dementia isn’t too late, but it certainly isn’t as early as it could be.

The power to turn around the tide of ‘challenging behaviour’ negativity and show a caring and supportive approach to the changed behaviour that is associated with dementia is something that rests with each one of us, no matter what our role or responsibilities.

Until next time...

You can follow me on Twitter: @bethyb1886

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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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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...

You can follow me on Twitter: @bethyb1886

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Harnessing the power of observation

I feel very strongly that one of the most important attributes anyone providing care and support to a person with dementia can have is the ability to observe.

In our helter-skelter, multi-tasking lives it’s easy to lose the quietly reflective quality of observation. Observation cannot be rushed, cannot be combined with anything else if it is to be truly effective, isn’t remotely technological, and may seem both outdated and old fashioned. Surely we need to be stepping in and ‘doing things’ to be providing optimum care and support – right?

Wrong! When you’re providing care and support for a person with dementia, whether you’re a family carer or a care worker, stepping in may well be the worst thing you can do. Of course we need to protect a person with dementia who might walk in front of a car, or burn themselves on the cooker, but in the vast majority of day-to-day circumstances talking a step back can be infinitely more helpful than getting involved.

One of the biggest problems people caring for a person with dementia often site is difficulties understanding the person. Those difficulties mostly arise because of limited or confusing verbal communication – the person with dementia is trying to articulate something, but the person listening to them cannot understand what they need or want.

Often the person providing support will then step in, make assumptions, and undertake an action that they think is needed. Sometimes they may have made exactly the right call, particularly if they are a family carer who has deep personal knowledge of their loved one or a care worker who has built up a really positive rapport with the person, but on other occasions the situation can rapidly unravel.

What then results is that the person with dementia doesn’t have their needs met (which is mistaken for them displaying ‘challenging behaviour’, something I wrote about here), and a vicious circle of frustration ensues for all concerned. With more finely tuned observation skills, it’s possible that such an unhappy episode could have been avoided.

Everyone who is providing care and support for a person with dementia wants to have that deep personal knowledge of the family carer, or the positive rapport of the studious care worker that I describe above. To get those levels of knowledge and rapport, however, involves many different skills, of which observation is a crucial one. 

Granted the family carer often has the benefit of years, if not a lifetime of knowledge about their loved one which, incidentally, is why family carers are so immensely valuable in society, but someone without that knowledge, like a health or care professional, can help themselves and therefore the person with dementia just by understanding the power of observation and interpreting the learning that comes from it.

One of the most widely recognised methods for enhancing dementia care, ‘Dementia Care Mapping’ from the University of Bradford, has observation as a founding principle. In CQC inspections, the 'SOFI tool’ is widely used – this was also developed by the University of Bradford and again is founded on observation. Meanwhile, observation features in the 10 facilitation skills that is part of the ‘Great Interactions’ training given to the staff employed by one of my consultancy clients, MacIntyre. 

So, far from being outdated or irrelevant, observation is actually a vital tool. It literally opens your eyes to what is really happening with a person, and is invaluable when a person’s dementia progresses and you need even more finely tuned skills to help provide them with optimum care and support. The reason it doesn’t feature in care settings as standard practice is that it is time consuming.

We all know how over-stretched social care staff are, and many providers simply do not staff their shifts to allow care workers to take time to observe and reflect upon what they are seeing. Budgetary constraints really are the enemy of observation, as is the need to ‘look busy’. You simply cannot ‘look busy’ if you are observing a person carefully and accurately.

What you are likely to learn from observation is immense, however. Good observation skills can tell you how a person is feeling, what they want or need and how you can best respond to them. It can also give you clues to their personality, their likes and dislikes, and the ways in which you can seamlessly integrate yourself into their life without being obtrusive, interfering and controlling. 

Observation is fantastic at promoting independence, but the very essence of good observation is about watching rather than doing. We are far too fond of doing things to or for people, without giving them the space and time to potentially accomplish those tasks themselves, or indeed go some way towards accomplishing them.

What observation isn’t is the tool of those who want to stare at a person with dementia. People with dementia deserve dignity and respect, not to be treated like exhibits in a zoo.  Observation should always be discreet, and with a clear objective of improving your understanding of the person with dementia to optimise their care and support.

Equally, observation isn’t the tool of the individual who doesn’t want to help a person with dementia who is in distress or struggling to accomplish something and becoming rapidly more frustrated and unhappy. It should never, ever, be used as a weapon of torture, where you are deliberately leaving the person to ‘get on with it’ regardless of whether they are able to do that or not. 

Making that judgement call is largely about the personality of a person in a care or support role. Those who observe most effectively are kind, compassionate individuals who instinctively know when to observe, how to reflect on that observation, and crucially when to intervene.  To some extent that judgement is also influenced by the culture of any organisation that person is working for. If the culture of the organisation encourages its workforce to observe, learn, reflect and adapt, and recruits workers with the values I outlined above, then observation becomes a regular, seamless part of the care and support being provided. 

What applies across the board, however, is that without observation a person with dementia will never be truly understood by those around them, their care will not be person-centred, and they will not have the freedom to express themselves or exercise their independence. That, I’m sure we could all agree, isn’t a life anyone would choose, so next time you’re with a person who has dementia think about how effective your observation skills really are.

Until next time...

You can follow me on Twitter: @bethyb1886

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