Action for dementia care and support - The basics of dementia

Welcome to the first of my five blog posts for UK Dementia Action Week 2018 (DAW2018). 

This year Dementia Awareness Week is renamed Dementia Action Week to reflect the need for action for people affected by dementia rather than only focusing on awareness.

In this spirit, I’m sharing the ‘Key Messages’ from my dementia care and support training modules. The training, devised entirely by me and heavily based on personal experiences from my dad's life with dementia and the many other people I've met who are living with dementia, is something I've delivered to numerous frontline social care staff as a standalone learning experience or to supplement the bespoke training and mentoring that I provide to individual services and organisations.

I've never shared these materials online before, and I'm hoping by doing so now I will inspire positive action amongst health and social care providers who are supporting people living with dementia and their families.

Day 1: The basics of dementia

My first module is called 'What is dementia?' and covers: 

• Facts and fiction
• Current statistics
• The different types of dementia
• The needs of minority groups - including BAME, LGBT, people with learning disabilities and younger-onset dementia
• The symptoms of dementia
• Other conditions with similar symptoms
• Living with long-term conditions alongside dementia
• Progression, ‘stages’ and the life course with dementia
• Dementia research

It concludes with:

For me these key messages, whilst very basic to many of us, are something every person providing care and support for anyone affected by dementia should live and breathe by.

Of course, there is so much more to what is in a 3-hour training session than I could convey in a short blog, but to give you a flavour of what this is like in 'real life' the module is the start of opening up conversations about the types of dementia, symptoms and experiences of the people staff are currently supporting. 

Everything I do asks learners to put themselves into the shoes of the person, so in this module learners think about what they might experience if they themselves were living with particular symptoms of dementia.

**ACTION FOR HEALTH AND SOCIAL CARE PROVIDERS**

PLEASE PRINT THE KEY MESSAGES IMAGE ABOVE AND PIN IT ONTO A NOTICEBOARD THAT ALL OF YOUR STAFF CAN SEE.

For more information on my training and mentoring consultancy work, please see my website: http://www.bethbritton.com.

Tomorrow (22 May 2018) I will look at 'Person and relationship centred care and support'.

Until then...

You can follow me on Twitter: @bethyb1886
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I need you

In my 2013 blog post ‘What is dementia’ I focused on the symptoms of dementia, noting the following amongst my very long list of ways in which a person can be affected by dementia:

“An increasing need for reassurance (someone who was previously independent becoming clingy or losing confidence), or a need to be constantly reminded about things”

Back then, I wasn’t aware of the phrase ‘trailing’ or describing a person with dementia as ‘following’ others around. I literally just thought of the need to be close to someone you trust as a need for reassurance.

However, watching the recent BBC Documentary ‘Granddad, dementia and me’, the phrase ‘obsessed’ was used repeatedly to explain Tom (who is living with vascular dementia) needing to be close to his wife (and carer) Pam. Tom’s need to be constantly with Pam had, for Pam, got to a point where she needed some time away from Tom.

The film throws up numerous issues which I will explore in my August D4Dementia blog, but I think the need Tom had to be close to Pam, and the effect on Tom and Pam's wellbeing when they were happily reunited towards the end of the documentary, is a really interesting one.

From the perspective of a spouse or family member, if you are used to your loved one being fairly independent, the way in which dementia can leave a person without the confidence to be on their own can be difficult to understand, adjust to or successfully support. Many spouses or family members end up feeling suffocated and like they haven’t got a minute to themselves. This was very strongly portrayed in ‘Granddad, dementia and me’ which in the early part of the film really made Tom look - to someone without a good understanding of dementia - like he was a nightmare to live with.

Look behind the visuals a TV camera provides, however, and the story is a different one. Firstly, the changes in his brain caused by his vascular dementia (the same type of dementia my dad had) weren’t Tom’s fault (even with risk reduction, no one is guaranteed to not develop a type of dementia). These changes were even more baffling for Tom than those around him – unless you are a person living with dementia, you cannot possibly understand exactly what it feels like to be a person who is.

When things are happening to us that we don’t understand, the natural human tendency we have from birth is to gravitate towards someone who is familiar, who we trust, find comfort with and love. We want to know that everything is ok. And if we have an unmet need that we cannot articulate, the natural reaction is to search for someone who might be able to interpret this, which is most likely the person we are closest to in our life, usually our spouse if our parents are no longer around.

In parenting, this is a given. As mums and dads we accept and expect that our young child will seek us out when they need us, particularly if they don’t have the language to articulate their needs or the ability to meet them independently. Indeed, clinginess in a young child is otherwise known as the child seeing you as a ‘secure base’, with separation anxiety accepted as a natural part of child development.

I appreciate that in marriage this isn’t a given – you marry an independent adult and expect them to remain that way. But there is another way of looking at the reassurance a person with dementia needs from the person closest to them – You are their ‘secure base’. It is a mark of how strong your bond is that you are the person that your loved one needs to be closest to.

I’m not for one moment suggesting an adult with dementia is now a child – they remain an adult regardless of their cognitive impairment. But the narrative and attitudes we have towards happy and successful parenting, and the narrative and attitudes we have towards supporting a person who is living with dementia, are poles apart and children are definitely getting the better deal!

That is not to in any way undermine the huge efforts made by families around the world in caring for their loved ones who are living with dementia. I was appalled at the criticism of Pam and her family – yes, we can all spot mistakes from the comfort of our sofa, but when you are living the experience it is very different.

What I wish is that Tom, Pam and their family could have been shown receiving really proactive support to ensure that they could give Tom what he needed. The film showed that medicating Tom wasn’t the answer, and two periods as a mental health inpatient (including sectioning – my views on sectioning are here) didn’t help.

So what is general good advice for any family whose loved one wants to be with them 24/7:

Occupation and activity

One of the major features of the first part of Tom's film is how little he had to occupy himself with. He was never shown to have any responsibilities or daily tasks, meaningful occupations, hobbies or activities that he enjoyed – not a healthy situation for a person who’d been a high-achieving, hardworking businessman.

 

That is not to say that everyone who lives with dementia will feel motivated to do things, my dad certainly went through a period when he refused to do anything except watch TV and look at books, and many people with dementia develop depression alongside their dementia which can also contribute to not wanting to do anything, but presenting those opportunities and making them a consistent part of every day life is vital.

 

Disabling people when they still have capabilities is a disaster. Not realising the person still has capabilities is a double disaster.

 

Do things together

So, you might think that ideal occupations and activities are ones that the person does alone, but think again. The person may not know how to begin, let alone successfully complete, a task. Doing things together not only means you being able to guide the person, but it enables the person to model what you are doing – it’s a subtle activity that is often wordless, and may happen without you even realising it as the person watches and copies you. A simple but vital way to boost the person’s independence without them having to acknowledge ways in which they are struggling.

 

Get your environment in order

If the person can’t remember their way to the bathroom or the kitchen, they are more likely to rely on following you to find their way. Some dementia friendly signage and simple design changes can all help to augment the person’s independence – see the world-leading dementia design work from Stirling University for tips and ideas.

 

Be the voice of confidence and reassurance

You may well be tired of telling your loved one "You can do it", but dementia is a very big voice in a person’s life that, essentially, is trying to hold them back, making the person insecure, vulnerable and lacking in confidence. As the most trusted person in your loved one’s life, you have the ability to stop that juggernaut in its tracks (temporarily at least) by being a constant source of support, confidence and reassurance. As the Bette Midler song goes:

 

Did you ever know that you're my hero,

And everything I would like to be?

I can fly higher than an eagle,

For you are the wind beneath my wings

 

Accept the unsaid

Hard and exhausting though the need for constant reassurance and company may be, accepting three little words – that will most likely never be said out loud - can be transformative for your resilience.

"I need you" is what your loved one’s quest for reassurance and confidence is really saying. Take it from someone who was once that needed person, it may be hard at the time but it’s harder when you are no longer needed.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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When losing, hiding or hoarding items becomes a problem

In May 2013 I wrote a blog post entitled 'What is dementia?' about the symptoms of dementia. I wanted to explore the different ways in which a person's dementia might manifest itself to reinforce the message that dementia isn't all about memory problems. One of the symptoms I listed is the subject of this blog post - losing, hiding and/or hoarding items or objects.

Most of us probably know someone who routinely loses things (their keys for example), many of us will probably hide things fairly regularly (presents and surprises for friends and family) and whole TV programmes have been made about people who hoard, so chances are either you, or someone you know, has a penchant for that.

Hoarding in particular is something many older people do, partly because of an accumulation of items from their lifetime, but also because hoarding can create what I'd describe as a safety blanket. Being surrounded by items which are familiar cuts down the empty spaces that can make a person feel like their life is bereft of meaning and purpose. In extreme circumstances hoarding can be as a result of a mental health problem, but that is rare.

 

So, given how 'normal' most losing, hiding or hoarding can be, you might be wondering what on earth they've got to do with dementia? In many ways the association is quite subtle - I would never say that being a person who loses, hides or hoards items is, on its own, a sign that the person either has a type of dementia or is likely to develop dementia in the future.

However, if a person otherwise not predisposed to losing, hiding or hoarding items begins to do this routinely and extensively, or if previous inclinations towards this significantly escalate, I would be concerned and consider if other symptoms are also present.

Equally, it's important to recognise that losing, hiding or hoarding aren't just symptoms associated with the development of dementia - they can also be significant factors in the life of a person already diagnosed, and are often then seen under the umbrella of 'behaviour', which is generally associated with the negative connotations of 'challenging behaviour', a phrase I dislike immensely, as explained here.

As a general rule, losing, hiding or hoarding items isn't necessarily a negative issue. Granted it can become one, for example:

•   Losing items can cause a lot of frustration, which a person may struggle to articulate or cope with

•   Hiding items can mean important documents or possessions can't be found, which may have negative consequences

•   Hoarding may affect levels of cleanliness or result in items being lost

But there is a flip side:

•   Consider if a person is hiding things because they are trying to create those surprises associated with their earlier life/childhood. What they are hiding might not be nicely wrapped presents, but the thought process might (in some instances) be the same as for gift-giving. Items may also be hidden if they are upsetting the person, or because the person no longer likes them but doesn't feel they have the autonomy to get rid of them

•   Hoarding may be due to that safety blanket feeling I described earlier. It may also stem from feelings of insecurity or concerns that other people may want to remove items that are important to the person (even if you can't understand what that importance might be)

My message, therefore, is that as in pretty much every aspect of dementia, things aren't always what they seem. And jumping to conclusions, or attempting to be a human bulldozer through someone's life, may be very counterproductive, resulting in those ‘challenging behaviours’ that reflect the fact that your 'behaviour' is actually very 'challenging' to the person with dementia.

In the years prior to my dad's dementia diagnosis, he hoarded by going to local auctions and buying up lots of (what appeared to me) to be random items. He bought loads of books from library book sales and regularly visited charity shops to accumulate household items. As all of these items came into the house, so the house began to feel like it was shrinking.

He would hide towels in the bed – a pile of clean bath towels under the duvet was commonplace - and he would hide paperwork if it looked like a bill or anything official. And of course he lost lots of items - from money and keys, to his glasses or the remote control.

In dad's later years in care homes plenty of items got lost, but in that environment it was as much down to communal living as it was to dad not knowing where he'd put something. Items were still hidden, mostly because dad didn't want someone else to get them, and hoarding still happened when dad collected up other resident’s belongings.

How did we cope? We never managed to stop dad losing, hiding or hoarding items, but some steps we took to alleviate the associated problems were:

•   Labelling items (especially when dad was living in care homes) and trying to have a specific safe place for things that really shouldn't be lost - a drawer for dad's glasses for example

•   Knowing favourite hiding places so we knew where to look if we needed to find something

•   Making sure dad could still hide presents and other surprises in the normal way that anyone would - dementia doesn't change the desire to surprise your loved ones!

•   Trying to strike a balance between dad being surrounded by the things that were familiar and comforting to him, but without having stuff absolutely everywhere. As a result, when dad was in care homes his room actually had a lovely lived-in, personalised, home-from-home feel, and from what I've seen of other care home bedrooms, I actually feel that a little bit of hoarding might be a good thing to remove the bare, clinical feel these rooms often have.

If you are a 'tidy person' (I am), it can be immensely difficult to support a loved one who hoards, but I would just add this: One person's chaos is another person's comfort. You may look at it and wonder how you will ever sort it out 'when the time comes'. The antidote for this feeling is simple: live in the present, with the person as they are. Make the most of the time you have together and don't stress the small stuff (even when there is what seems like mountains of it!). 'When the time comes', as it sadly did for my dad, the sorting out gives you a sense of purpose which, for me, was strangely helpful.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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When concentration becomes difficult

I suspect that from time to time most of us lose our focus on a task, object, TV programme, person or other aspect of our life that momentarily requires us to put aside all other thoughts and images to ensure our full attention. This lack of concentration is sometimes associated with a lack of interest in something or someone who we are meant to be focusing on, or a need to ‘get something done’ that we perhaps really don’t want to do at that time.

In the context of living with dementia, however, a lack of concentration can be more than an occasional annoyance and become very pervasive into daily life, both for the person themselves and those around them. A problem concentrating is something that many people with dementia report as an early symptom and it can come in many guises, from difficulty in concentrating when reading and writing, to problems focusing in conversations, when driving, watching TV, or completing routine tasks of daily living that previously held the person’s attention.

I can only imagine how frustrating these issues must be for a person with dementia, and whilst they may act as an early warning sign to seek help, a diagnosis can at best explain the problem rather than making it go away. As a person’s dementia advances, problems around concentration can become much more acute and affect an individual's ability to focus on eating a meal, drinking a drink, getting dressed, washing themselves or participating in hobbies and activities.

For those around the person with dementia, be they family, friends or professionals, this lack of concentration from the person with dementia may also pose problems. It can lead to frustration that the person isn’t focusing on something that they need to focus on (like eating), and massive concerns about their wellbeing. These worries often set off a pattern of trying to persuade the person with dementia to concentrate on whatever it is they aren't concentrating on, and if that doesn't work the family member, friend or professional exercising their power and bossing around the person with dementia.

First and foremost, I am not a fan of trying to make people with dementia do things that they either don’t want to do, or in the context of a lack of concentration, are struggling to do. What I am a fan of is trying to find alternative ways to support the person so that life can remain as familiar and comfortable for them as possible.

So for example, not everyone can concentrate for long enough to sit at a table and eat or drink. That’s fine. They might prefer to sit in a comfortable chair with a meal on their lap, or eat finger food on the go while they walk (my dad went through a phase of doing this). We can often become very fixated on people doing things in an ordered way, or in the ‘usual’ way, or in the way they’ve always done them, and if the person with dementia responds well to those options then great, but if they don’t it is important to be flexible and modify the way we support them rather than expecting them to conform to what we want or believe is necessary.

These modifications often happen more readily when we think about the essential aspects of life – like eating and drinking – but often happen less automatically with the elements of daily living that might be seen as ‘optional’. Here I am thinking about supporting a person’s hobbies or interests, or even just helping them to do things that keep them physically active or mentally alert.

Lack of concentration shouldn’t mean a person with dementia has to abandon things they previously enjoyed, or indeed give up discovering new things. What is needed is an understanding that the person may not approach a hobby, interest or task in the same way that they used to – IE: sitting and reading a book, watching a favourite film from start to finish, participating in a board game, doing needlework, cooking, housework, gardening, painting/drawing etc – but that they may still be able to do these things in a different way (change location/time of day etc), in shorter bursts of activity, and/or with more intensive assistance (helping the person, not doing it for them).

When concentration wains some prompts may be helpful, like talking to the person about what comes next, or inspiring them by reminiscing about aspects of their early life that might relate to what they are trying to do. For example, if the person is doing something creative like painting or drawing, but struggling to start or continue with it, thinking about something they loved in early life might just spark a thought that they can commit to paper.

If the person struggles with conversation, some picture and word cards might help. Make sure any glasses or hearing aids that are usually in place are being used, and that distractions are minimal or non-existent (a blaring TV in the background is rarely a good idea). Think too about balance - respect independence but don't leave a person with dementia struggling or disappointed because they can't complete something. For example, if concentration is difficult when reading a book, see if the person would like you to continue reading it to them when they have gone as far as they feel able to that day.

Above all, offer gentle encouragement, and try to back up the person’s fleeting thought processes by helping to think for them in a completely person-centred way, sensitively anticipating, guiding and reassuring. This should always be supportive, rather than in any way controlling, and it will inevitably involve a lot of patience, time, calmness and perseverance.

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...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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