Fixing dementia care in hospitals

Standards of hospital care for people with dementia made the news last week, with an investigation by the Alzheimer's Society showing shocking variations in the quality of care being given, prompting the charity to launch their 'Fix Dementia Care' campaign.

Given that this time four years ago my father was still alive, and had been the recipient of some extremely variable hospital care in the years prior to 2012, it is a source of huge concern and sadness for me that many of the problems we experienced continue today.

The Freedom of Information requests that provided the substance for the Alzheimer's Society investigation highlighted that people with dementia were:

•    Falling while in hospital

•    Being discharged at night

•    Being marooned in hospital despite their medical treatment having finished 

Whilst my dad thankfully never had a fall whilst in hospital, being discharged at night was something he experienced on almost every inpatient stay. The reason given in his latter years with dementia when he was completely immobile was that he needed transportation via ambulance, and this was most easily accomplished at night when paramedics were less busy. Never mind what dad might have wanted of course.

 

I suspect the fact that he was being discharged to a nursing home, with staffing 24 hours a day, was also a somewhat convenient excuse. It was, however, a horrible experience for dad - these events often came in winter, and being moved out into the cold night air when he should have been tucked up in a warm bed was, in my view, a particularly sadistic form of 'care' that would leave him upset, disorientated and confused.

 

Being marooned in hospital was also a harsh reality for dad - at one point he spent three months in hospital (despite being medically fit for discharge) whilst funding was arranged for the care home placement that his doctors said he needed. During this time dad lost half of his body weight and the NHS picked up a huge bill for his care - a no-win situation for all concerned.

 

Alongside collecting data from Freedom of Information requests, the investigation by the Alzheimer's Society surveyed people affected by dementia. They found that 92% of those individuals felt that hospital environments were frightening and only 2% felt that all hospital staff understood their needs. 

 

Reading this led me to reflect on how my dad might have responded to his hospital experiences. I'm certain he found the hospital environment pretty unpleasant, from the noise, smells and routines of hospital life, to difficulties in finding facilities like the toilet and having opportunities for stimulation, occupation or activity during the long days as an inpatient. Only on one particularly 'fortunate' stay in hospital could I honestly say that dad had a better experience - he had his own room and staff found him a CD player. We brought in CD's for dad and his mood changed completely. Simple stuff, but so effective.

 

Sadly, however, meeting staff who understood dad's needs wasn't the norm. During the latter years of dad's dementia when he had dysphagia (swallowing problems), hospital staff refused to allow him to have food or to help him eat it, mistaking his hunger cries for pain and writing him up for morphine. This was a 'mistake' that could be interpreted as covertly putting him onto an end-of-life pathway by administering a drug that he didn't need and could have shortened his life with an inappropriate dosage.

 

Furthermore, this 'mistake' was only rectified because dad had a family visiting him for eight hours a day, speaking up for him, and bringing him food and drinks and helping him to consume them. We would also assist him with his personal care - without that help a man who liked to be clean shaven would have begun to grow a beard. But what happens to people without this family support? Do they get inappropriately medicated, starved, dehydrated or left dirty, uncomfortable and neglected? The variations exposed in the quality of hospital care suggests that this is likely to be a reality for some people with dementia who are inpatients today.

 

Despite the many difficulties we encountered with hospital care, however, I don't want to paint a completely bleak picture. There were good experiences, staff who genuinely cared and understood what dad needed, as well as providing great support for us. This was particularly evident in dad's last stay in hospital when he'd been rushed in with an aspiration pneumonia. 

 

His care was excellent, with the doctors treating him taking a lot of time and trouble during their interactions with dad and in their care for him, alongside explaining things to us and giving us time. Our decision to seek end of life care for dad from a care home wasn't because we were unhappy with his hospital care, but rather that the hospital couldn't offer the homely environment or privacy we felt he needed as his life approached its final stages. 

 

So, how do we ensure that hospital care is a high quality experience for every person with dementia? In my view providing comprehensive dementia education for all hospital staff (which Health Education England are tasked with delivering) and making environments more dementia friendly will only go so far.

 

The root of much of what is wrong stems from compartmentalisation. Hospitals work best when a person is admitted with one condition and treated for that condition. However, people with dementia often live with other conditions alongside their dementia, and are usually always admitted into general hospitals not because of their dementia but because of infections (mostly notably chest and urine infections), another long-term condition (like diabetes, heart disease or asthma) that hasn't been well managed, or because they've had a fall in their own home or in a care home.

 

This was never more evident for us than when dad needed hospital care during the last four years of his life when he had dysphagia. Treating a gentleman with dysphagia who also had dementia and all the challenges that brings around communication was an alien concept for most hospital staff, with approaches varying from the starvation I mentioned above, to trying to force a tube through his nose into his tummy rather than orally proving food (a tube he promptly pulled out), and providing ice cream (that quickly melted) as a suitable 'thickened' food for him (which in reality was as liquid as the water out of the tap).

 

What is needed to combat these issues is more holistic, joined up care that sees each person as a whole human being and treats them as such regardless of how many problems they have with their health and which of these problems has led them to be hospitalised. This approach needs to be combined with a comprehensive 24/7 service that enables individuals to access the care and support that they need when they need it. People can become unwell on any day and at any time - prompt treatment and, crucially, the availability of care and support when they are ready to leave hospital, is vital. 

 

Furthermore, if hospitals that are underperforming (as highlighted by the Alzheimer's Society Freedom of Information Requests) learnt from the hospitals who are providing some of the excellent care that the Alzheimer's Society found, these huge variations in care would become a thing of the past. It heartens me that some outstanding care does exist, but I remain saddened that so little seems to have improved since my dad was living with dementia. Clearly we still have a lot to learn.

 

Until next time...

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Dementia takes... and dementia gives

The start of a new year is a time that many people find themselves in a reflective mood, and I have more cause than most to feel that way as 2016 kicks off.

As some readers may know if they follow me on social media, I became a first-time mum last November.

A very proud mummy to a very beautiful daughter, Sophie Rae, born 21 November #totallyinlove pic.twitter.com/gUdhBHlWww

— Beth Britton (@bethyb1886) December 4, 2015

Parenthood opens up a whole new world, and inevitably makes you think about family life in a totally different way. Amongst the flurry of people eager to meet the new addition, you inevitably think about those who will never meet your child, and for me the person at the forefront of my mind is of course my dad. 

In the film I made for the G8 Dementia Summit I said of dad’s dementia: 

"It’s robbed him of opportunities that, obviously, now he will never have"

When I said this I was particularly thinking about potential future grandchildren. My dad loved children, and would have adored being a grandparent. The look on his face had he had a newborn grandchild placed in his arms is one I can picture vividly in my imagination, and I feel a huge sense of loss that I cannot experience that in real life.

Dementia has robbed us of that opportunity, that moment that would have become etched into our family history and captured by camera to preserve forever. The reassurance that comes from feeling dad's constant presence is a consolation, but it doesn't replace the real thing and never will. For that I hate dementia and I hate the fact that by developing it, dad's life was limited and, in my view, ended before its natural conclusion.

In the midst of those feelings it's hard to see positives, but they are there. Dad's legacy is one our daughter can learn from and be proud of. Dad's life with dementia left a story for me to tell that has much to inspire an enquiring mind as it grows and develops, and nothing will make me prouder than having our daughter in an audience one day when I'm speaking at a big event. I hope that even if she doesn't want to follow in her mum's footsteps in her working life that she will see the good, the kindness and the love that goes into what I do every day.

None of those things will replace learning from my dad's wisdom or having his cuddles, but she will come to know and appreciate everything that made him such a special man. In that way, dementia gives a little - it gives her lessons to learn, kindness to emulate, and a foundation to lead her life embodying the qualities my dad so admired and strove to teach me every day - humility and respect.

Since I would give anything to be able to introduce our daughter to her maternal grandfather, it makes me very sad to think of the many children that could be part of the lives of their older relatives and aren't. Without any reservations whatsoever I would have ensured our daughter was part of my dad's life during his years with dementia, including taking her to visit him during the nine years he spent in care homes.

I am certain that the interaction between the two of them would have been magical. Children don't judge people with dementia in the way that adults often do. Babies in particular have an innocence and a vulnerability that could never threaten, intimidate, or make a person with dementia feel inadequate or less of a human being. There is so much that we as adults could learn from the unconditional love and trust a tiny baby gives us, and use those lessons to impart the aforementioned qualities into our interactions with others, particularly people who are living with dementia.

My memories of my dad, and the many things I learnt from him both before and during his life with dementia, will undoubtedly influence the kind of parent I am and will grow into being in the years ahead. I can't help feeling that those lessons belong in some way, shape or form in parenting classes - proof, if it were ever needed, that intergenerational learning and intergenerational work in dementia awareness has never been more relevant, or more needed.

Until next time...

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My top 10 most read blog posts

One element that fascinates me about blogging is which topics get the most attention from readers. There is no particular formula for how I choose what to write about, so to see what becomes most widely read is really informative for me. 

To round-off 2015, I wanted to compile a blog that reflects the posts on D4Dementia that have been read the most. With over 170 entries on a variety of topics relating to dementia, health and social care, there is certainly plenty of subject matter to trawl through, and for me, many fond memories of writing particular blogs.

So (drum roll) here is my top 10 to date:

10 – Think about the ‘Dementia Words’ that you use
Published in May 2015, this post focuses on the language used in relation to dementia, a topic that always ignites passionate responses. The inspiration behind this particular post was the Dementia Action Alliance and DEEP (Dementia Engagement and Empowerment Project) Call to Action entitled ‘Dementia Words Matter’.

 

9 – NCD (Otherwise known as dementia)
Published in November 2012, this post focuses on the drive to change the name of dementia to ‘Major or Minor Neurocognitive Disorder’. Unsurprisingly, as it’s another post focused on language around dementia, it has been a very popular read.

 

8 – Hydrated and happy
Published in May 2013, this is the first of what I’d call my ‘practical advice’ posts to feature in the top 10. Hydration is such a key topic in dementia care, so I'm delighted it has been so widely read. 

 

7 – The carer’s job description
Published in June 2012, this post remains one of my personal favourites. I’ve written extensively about the role of family carers since ‘The carer’s job description’, but I don’t think I’ve ever improved upon how I opened this particular blog: “If you had to be isolated, unsupported and fight the system, would you apply to be an unpaid carer? This is not a position that fills you with hope for the future, gives you room for personal development, or brings the benefits of structured team work. Yet thousands of people fulfil this truly unique role; not because it was their dream job and certainly not because of the bonuses and benefits.”

 

6 – Understanding aggression
Published in July 2013, this is the second of my ‘practical advice’ blog posts to make it into the top 10. Although I’ve never been entirely happy to categorise any dementia symptom as ‘aggression’, largely because I think the bluntness of that language helps to reinforce stigmatised views about people who are living with dementia, I hope the wording is forgiven in favour of some of the really important points in the blog that I wanted to put across in the most straightforward way possible.

5 – End-of-life care: A very personal story
Published in June 2012, this is easily the most difficult blog post I’ve ever written. Discussing my dad’s end-of-life care for the first time was very emotional, and I remember reading the blog back to myself for the first time after I’d written it and the tears streaming down my face.  

4 – Caught on camera
Published in October 2013, this is perhaps the most controversial blog post in my top 10. It explores the use of hidden cameras in care homes, a topic that remains hugely divisive to this day. 

3 – The voices of experience
Published in June 2013, I’d like to think that the inclusion of this blog post at number 3 in the top ten is testimony to the real groundswell of opinion that the voices of people with personal experience of dementia, whether they are living with a diagnosis of dementia or a past or present carer, should always be heard at any and every event about dementia. Sadly I think there is still a long way to go to make this a reality, but since I wrote this post things have moved in a more positive direction around including and valuing personal experiences. 

2 – So how much do you know about dementia?
Published in September 2012, this is another of my personal favourites, a blog post all about busting myths and challenging stigma. I’ve written about dementia awareness many times since this blog post, but the basic messages in this particular piece are as relevant now as they were then. Written before we had ‘Dementia Friends’ and some of the other high-profile awareness-raising initiatives, this was a real trail-blazer blog post for me, and one that I still see referenced on social media.  

And at number one…. 

1 – Hard to swallow
Published in September 2012, I honestly never imagined that when I wrote a blog on dysphagia (swallowing problems) that it would attract such a wide and extensive readership. I suspect the popularity of this post is testimony to the fact that trying to find out essential information about this common aspect of dementia care is difficult for both families and professionals alike. Nothing makes me happier than to know it has been so widely read, and judging by the feedback I’ve received the advice in this blog has been extremely helpful to numerous people from a wide variety of backgrounds.

So there you have it, my top ten most read D4Dementia blog posts. What this list tells me overall is that practical advice really reigns supreme when it comes to blogging about dementia. ‘Hard to Swallow’ isn’t at number one by a narrow margin – to put this into context, it’s been read by as many people as numbers 2-5 combined.  

Of the remaining ‘practical advice’ blog posts in the top ten, I’m not at all surprised to see my blogs featuring tips to keep a person with dementia hydrated and how to understand and cope with aggression are both really popular reads. Just missing out on the top 10 were my blogs on understanding how a person with dementia expresses themselves and how to promote continence and cope with incontinence, which only reinforces in my mind that readers really value the chance to explore our personal experiences as a family, alongside gaining tips and advice for coping themselves.

Of the remaining posts, to see end-of-life care at number 5 proves that a topic so many of us shy away from needs to be tackled, and of course from a personal perspective, to see my first major blog on family carers being so widely read is a real plus point for me. Dementia language and awareness were, I think, always likely to feature given the growing prominence of both issues, and dovetails rather neatly with the messages in my blog post about involving people with personal experience of dementia. Finally, of course, tackling a controversial issue like cameras in care homes inevitably draws attention – hopefully it has also helped to provide some clarity on a topic that divides opinions.

As this will be my last D4Dementia blog post of 2015, all that remains is for me to wish you all a very Happy Christmas and New Year. I hope the festive season brings you joy and many treasured memories. Mine will be my first as a new mum, and I will perhaps reflect on this next year. D4Dementia returns in January, with the first blog post planned to go live on Monday 11 January. 

Thank you for your amazing support during 2015. Here’s looking forward to 2016!

 

Until then...

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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Supporting a person with anxiety

Anxiety is commonly mentioned as one of a raft of symptoms linked to the development and progression of dementia. It is thought that dementia can both exacerbate anxiety in those who have a history of being anxious, and also bring about anxiety in people who were previously never known to be anxious. In short, anxiety and dementia are often inextricably linked.

What interests me when thinking about anxiety and dementia is how the actions of those individuals around a person with dementia may, or may not, contribute to the promotion of anxiety in the person who is living with dementia. In my opinion, a common mistake when thinking about the manifestation of many symptoms of dementia is that they all exclusively originate as a result of the damage that the person’s brain is going through, when other factors could also contribute or at very least enhance many symptoms of dementia.

As I’m not a scientist, I’m not about to align this theory with findings from some extensive research study I’ve undertaken. My viewpoints are based on personal experiences with my dad and other people who are living with dementia, observations made in my personal and professional life, and good old fashioned common sense, which I often feel is severely lacking in much of what is thought and taught in relation to dementia.

The difficulty with anxiety is that it has a tendency to set in motion a snowball effect. Very early on, when family members start to notice changes in their loved one, they may well become anxious. The mind has a habit of fast-forwarding to worst case scenarios at the onset of any type of health-related concern that could have long term, irreparable consequences. Anxiety can be difficult to hide, even at this juncture, and could therefore affect the person who may, or may not, be developing dementia.

Meanwhile, if the person who is potentially developing dementia picks up on either their family’s anxiety, or begins to feel their own anxiety at disconcerting events - like forgetting names, the location of places or objects, dates and times, or struggling to maintain their daily routine - then anxiety is already doing its unpleasant work and putting everyone on edge.

Some people cope with anxiety by trying to prove that they can do what is making them anxious, which for a person with dementia may only make them more anxious and prone to what they might feel is ‘making a mistake’. Other people cope by hiding away from what is making them anxious, which can result in not participating in things that they normally would participate in which is then seen as withdrawal, another symptom of dementia. 

In almost any scenario related to anxiety and dementia, there is also the possibility for elements of depression to set in, which again are very counterproductive. Bringing all this together into the diagnostic process for dementia can result in a fairly gloomy prediction of what post-diagnostic life is likely to entail. This is perhaps best summed up by Kate Swaffer, a lady living with dementia, who has trademarked the term ‘Prescribed Disengagement’. Anyone receiving that type of ‘treatment’ is bound to feel lots of negative emotions, including anxiety.

Anxiety isn’t just linked to our mental processes either. It can manifest itself in many unpleasant physical ways, like loss of appetite, nausea, stomach pains, diarrhoea or vomiting, and through outbreaks of spots, itchy or sweaty skin, headaches, shortness of breath and exacerbation of a wide range of pre-existing conditions. Quite a few of these physical signs can also go towards contributing to a fairly negative assessment of a person’s prognosis in relation to dementia.

Even if anxiety doesn’t bite as a person is developing dementia, it may strike later on, in fact anxiety is often seen as a contributing factor to ‘challenging behaviour’, or as I prefer to describe it, unmet needs. My dad had problems with anxiety during periods in hospital, an environment that heightened his confusion and made him naturally anxious. Equally, in one my dad’s care homes, I distinctly remember a lady who had days of pacing the corridors looking exceptionally anxious and believing she had killed somebody.

The problem with anxiety, whether you have dementia or not, is that it is rarely rational. Add in the unpredictability of dementia and it makes anxiety much more difficult to cope with. If people around the person with dementia are also anxious, that only makes matters worse. So for example, individuals around a person with dementia might: 

·        Be unsure of how to speak to the person or react to something that they are saying – see my blog post 'Talking the talk' for some help and advice.

·        Be fearful of what a person with dementia might do – this goes back to the way in which ‘challenging behaviour’ is viewed. See my blog post 'Fear factor' for an exploration of fear and dementia.

·        Feel out of their depth or overwhelmed at the prospect of caring for or supporting a person with dementia – this is where training becomes so important

If you’re experiencing any of these feelings or situations, then any anxiety you’re going through is likely to be pretty transparent and therefore obvious to the person with dementia. It’s completely wrong to assume that just because a person’s dementia may have advanced to a point where there are significant problems with communication, or communication is non-existent, that the person with dementia doesn’t pick up on the words, actions, emotions and feelings of those around them – my belief is that the ability to sense how others are feeling remains with a person until the end of their life.

 

Helping a person with dementia to feel less anxious is about calm reassurance, and putting your feelings to one side in order to focus on the person with dementia, their needs, and how you can best support them. This will never be achieved if you’re an anxious wreck. If you are a person who feels out of their depth through lack of knowledge, ensure you plug those gaps through whatever means are available to you. 

 

If your anxiety is rooted more in fearfulness of what the person with dementia might do, coping with this is about trying to understand the world from the perspective of the person with dementia. What is happening around them, either with other people or the environment, that could affect how they react, and what could you do to make them feel more reassured?

 

If you’re a family member who is unwittingly projecting your anxiety about the future onto your loved one, take a step back and look at whether this is helpful for either of you. Your own health will undoubtedly suffer as a result of this type of anxiety, and I’ve already covered how negatively it may affect your loved one.

 

Without wishing to in any way hide from the realities of how dementia progresses, I think it’s important to remember to live in the moment, focus on what you have in that moment and any changes, however small or apparently insignificant, that you could make to enhance that moment. This is positive action that should help to relieve both your own anxiety and any anxiety the person with dementia has either picked up from you or is feeling independently of you.

 

Sadly there is no magic solution to anxiety in dementia care, but empathy, compassion, positivity, and being both person-centred in your approach and living in the moment are ways in which temporary and sometimes permanent relief can be found for all concerned.

 

Until next time...

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The ‘stages’ of dementia

I had a very refreshing conversation recently with someone running a care company about the 'stages' of dementia. In this person's view, the way in which the medical model defines dementia by different stages isn't helpful for a more human understanding of what dementia really is and how it progresses. Unsurprisingly, I agreed.

The stages of dementia are generally defined as follows:

Mild/Early Stage: Characterised by the onset of a range of dementia symptoms – these could be anything from memory loss to confusion. I describe some common dementia symptoms in my blog post ‘What is dementia’. This is generally considered to be the stage at which dementia should be diagnosed.

Moderate/Mid Stage: Symptoms experienced in the mild/early stage are increasingly severe, and changes in behaviour can become more marked and difficult to cope with, both for the person with dementia and those caring for them. If a person is diagnosed at this stage, it’s considered by many medics to be a late diagnosis.

Severe/End Stage: This stage is characterised by further deterioration of previous symptoms, but is particularly marked by physical frailty – for example the person may become immobile, incontinent, have swallowing problems, experience weight loss, be at an increased risk of infections, and have severely limited or non-existent verbal communication.

I've actually never been a fan of compartmentalising, which is how I see the concept of stages in dementia. For me it's fraught with problems for the following reasons:

1. No two people experience dementia in the same way, even if they are diagnosed with the same type of dementia (and there are over 100 different types of dementia).
2. Dementia is notorious for giving a person good days and bad days, so in the staging model a person could appear to be mid stage one day and more early stage the next day, making staging very unreliable as a concept. This is even more applicable if the person has other conditions, alongside their dementia, which can fluctuate.
3. Severe/end stage dementia is often confused with end-of-life, which would be encapsulated within it, but in reality a person could fit into the severe/end stage category for far longer than a few days, weeks or months. Technically my dad would have been severe/end stage for at least 6 years, but in the earlier part of those 6 years his dementia manifested itself in a way that meant he bordered both moderate/mid stage and severe/end stage. This only serves to further highlight the shortcomings of viewing dementia through a rigid staging model.

What is immediately obvious to me is that given the complexity of dementia, referring to stages has the ability to drastically mislead care professionals and families, and could, at worst, affect decisions about care and support that may adversely impact upon the person with dementia. The concept of stages also encourages comparisons to be made about people who technically fit into the same stage, but are in fact completely different in how they are experiencing their dementia and reacting to it, which can only make the minefield of care and support more baffling.

Looking at dementia through the prism of stages destroys concepts like individuality and being person-centred, because it assumes all people who are living with dementia are one homogenous group, which they most definitely are not. I also feel staging has the ability to affect whether a person receives positive care and support throughout their life with dementia – for example, would an individual considered to be in severe/end stage dementia be offered as many positive care and support options as a person in 'moderate/mid stage' dementia? They certainly should be, but I suspect that the association of end-of-life with severe/end stage dementia might restrict more positive care and support because the person is seen as being less in need now that they are coming to the end of their life (which as I've already pointed out in my dad's case, can be far from true).

Staging also has the ability to dampen hope, which concerns me greatly. When I talk about hope, I’m not talking about notions of a cure for dementia tomorrow, or unrealistic expectations for a person's recovery from having significant symptoms of dementia to being back to their pre-diagnosis self. Hope, for me, is about giving families and professionals the drive and determination to make the life of the person with dementia happy, fulfilled and reflective of everything that person enjoys, with a massive emphasis on living in the moment and enjoying the good days.

Mentally that is difficult to align with the stages of dementia, because again, the concepts associated with progressing from one stage to another are inevitably likely to cause those around the person to lose a little hope, perhaps feel deflated, blame themselves for not doing more to keep that person at the previous stage for longer, and enhance the feelings of loss that are very common for families and family carers.

Given the negative connotations regarding the stages of dementia, it’s all the more unsettling that many families I’ve known, both personally and professionally, have been encouraged to become very focused on the stages of dementia, when in reality the juncture that their loved one has reached with their dementia at any given time isn’t what is important. Encouraging families to focus on what is possible, what their loved one can do, and how they can provide optimum care and support is far more helpful.

Perhaps even more worryingly, I’ve known medical staff who use the staging model to justify recommendations or decisions about care that families can often feel compelled to agree with because they’re being told that their loved one has reached a certain stage of their dementia. When my dad was immobile, incontinent and living with dysphagia (swallowing problems – more information here), we met doctors who questioned his quality of life and predicted his imminent demise due to his end stage dementia. Without a family to advocate for what he could do and did enjoy, he would have been compartmentalised in a way that effectively wrote him off as a human being.

I’m not in any way seeking to deny that dementia is characterised by deterioration and is terminal, but I also strongly feel that an antidote to the concept of staging is long overdue. For me, this would simply be:

See each person with dementia as an individual in their own right, and if you must assess them, assess them in the context of the moment in time when you are assessing them, keeping a completely open mind as to what the rest of that day, week, month or year might bring for that person. More than anything the person with dementia needs appropriate care and support, not a misleading label.

Or to put it another way, in the words of Helga Rohra, a lady living with dementia:

“The faces of dementia, rather than the stages of dementia.”

Until next time...

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