Myths and lessons

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at awareness.

My first D4Dementia World Alzheimer’s Month blog in September 2012 was entitled, ‘So how much do you know about dementia?’ In the blog, which remains one of my most popular to date, I sought to bust myths about dementia and talk about what dementia had taught me. The myth-busting is particularly interesting to look back on as the blog was written before Dementia Friends - one of the key initiatives to raise awareness of dementia - was launched. Some of the messages from that blog went on to be incorporated into Dementia Friends and have become mainstream knowledge, but they are still worth repeating:

• Dementia is not a normal part of ageing (types of dementia are caused by diseases of the brain). 
• There is so much more to dementia than just forgetting things (dementia symptoms are multi-faceted, vary hugely and are individual to each person).
• Dementia doesn't just happen when people get older (young onset dementia, defined as dementia in someone under 65, is increasing and dementia can even occur in children, although this is rare).
• People with dementia are still people, not a disease. 
• Dementia is not contagious. 
• Those living with dementia still want to lead active and full lives and not be locked away and forgotten about (most people want to be cared for at home, not in communal establishments).
• People with dementia can make a positive contribution to society if supported to do so.
• You can live well, or live as well as possible, with dementia.

I followed the myth-busting with some personal reflections about what my dad’s dementia had taught me:

• To appreciate the smallest things in life, since they become extremely precious (a simple “Hello” from my dad in his final few months brought a massive smile to my face). 
• To make the most of every day (good days and bad days become an ever-present feature with dementia, and when the good ones come along you want to make the most of them). 
• To never give up (yes there isn’t a cure yet, but there is a lot you can do to make someone’s life with dementia a more positive experience than it would have been ten, twenty or thirty years ago). 
• Finally, in my case, to share our experiences with the world (everything my dad went through is there to inform, educate and influence others. He would have wanted to make a real and lasting difference, and hopefully through me that will be his legacy).

Despite there being seven years between writing that 2012 blog and today, and a multitude of other experiences gained primarily through my work but also from people I’ve known personally, I cannot better those last four points - they sum up so much of what I talk about regularly. 

Appreciating the smallest things in life feeds into the principle of taking notice, one of the Five Ways to Wellbeing that have been pioneered by the New Economics Foundation and are widely recognised as key aspects of supporting good mental health. In 2012 I gave the example of my dad saying a simple “Hello” to me in the last months of his life, but I’ve since heard about even more precious, seemingly ‘small’ moments, not least a lady whose husband (who was living with dementia) told her he loved her - quite unexpectedly as he wasn’t given for such proclamations she said - just hours before a major stroke left him unable to speak another word for the rest of his life.

Making the most of every day was, in my dad’s case, particularly notable when we were supporting him in things that reflected the happiest memories from his life. Examples of that included listening (and singing) to music he loved, looking at books he’d enjoyed in his life (including reading a poetry book about love in the last days of his life), enjoying favourite foods (roast beef), or talking about some of his favourite memories of his life and looking at items that reflected those, which in my dad’s case were his notable achievements as a farmer. We, of course, knew my dad’s life story and so were able to facilitate all of this interaction, but for professionals currently supporting a person that they don’t know as well I would wholeheartedly recommend life story work – it really is the gift that keeps on giving.

Never giving up for me means being really person and relationship centred in your approach to supporting the person. If you spend a lot of time focusing on the big picture of dementia (the minimal treatments and lack of a cure) and the stark reality of dementia as a progressive and terminal disease, you can very quickly feel like giving up. Whereas if you get back to thinking about the person, what might make their life happier or more comfortable right now, you can find a sense of positivity and achievement. A classic example of this comes from a gentleman I met who every Friday would bring 3 roses to his wife in her care home. I was curious as to the significance of the day and the number of roses so I asked him. He said the roses (which always had to be different colours) represented their 3 children, all of whom had been born on a Friday. He said his wife couldn’t remember their names now, so the roses (roses were his wife’s favourite flower) had become her way of feeling close to her children (two of whom now lived abroad). She would hold, caress and study each of the roses and they’d have conversations about ‘red’ rose, ‘pink’ rose and ‘yellow’ rose, with him weaving in details about their children’s lives to make the conversation more meaningful.

Sharing experiences remains one of my greatest passions. Telling my dad’s story and the stories of the many other people I’ve met who are ageing and/or living with dementia is the most powerful way I’ve found in 7+ years to illustrate the health and care experiences individuals and families are having. I’ve seen first-hand how illuminating and inspiring personal experiences are for professionals involved in care and support, and I personally believe it should be mandatory for all dementia training to include these experiences. For this World Alzheimer’s Month, if you’re looking for some inspiration beyond this blog hunt down one of the many blogs, books, films or recordings that people with dementia have made or contributed to and you’ll see why nothing beats hearing from those actually LIVING with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886
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Communication - It’s more than just words

With over 200 blogs on D4Dementia now, some of them approaching 7 years old in May this year, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. To begin, I want to look at communication.

In 2013 I wrote a very popular blog entitled, ‘Don’t ignore me.’ It was all about how a person with dementia might express themselves, highlighting that;

“Speech is only one form of communication; assessing body language, the choices being made, positive or negative reactions and different behaviours can often tell us a great deal without a single word being uttered.”

It was a blog I wrote mostly to share how my dad communicated, particularly in the latter years of his dementia, in the hope it might help others to understand that a lack of verbal communication isn’t, as many of us might assume, the end of communication.

Losing the ability to verbally communicate is something I see often in people whose dementia has significantly advanced. Sadly those people are still being far too quickly and easily written off, as I described in my ‘Don’t ignore me’ blog where I wrote about that hideous phrase ‘unresponsive’:

“A popular phrase to describe someone with advanced dementia is ‘unresponsive’. In my view it is a description that says more about the abilities of the person using it than the person with dementia. No one is ever 'unresponsive'. You may have to work a bit harder to find something that creates a reaction, but even someone with very advanced dementia is capable of expressing themselves in their own unique way if they are stimulated to do that, and the person enabling that stimulation then has the ability to interpret the resulting expression.”

You might imagine that in 2019 the phrase ‘unresponsive’ to describe the communication of a person with dementia would be obsolete, but not so. I saw it written in more than one care plan in the latter part of 2018, and promptly sought to change the perceptions of the people who’d written those plans.

On the flip side, also in the latter part of 2018 I saw some truly inspirational communication with a gentleman called Peter*, who is in his 50's and has been speech-impaired for most of his life. Peter's family, rather than finding this difficult describe it as a blessing. Why? Because his siblings say it meant that they grew up learning to communicate in multiple different ways, rather than relying on speech as most of us do.

Peter's family have developed, as a unit, a communication system highly personal to them, that combines elements of sign language, body language, facial expressions, body movements, objects and pictures. They emphasise that rather than just using their mouths, they and Peter use their whole body to communicate. So for example, flexing his toes means that Peter needs to move. In order to observe this if Peter is wearing socks, his family bought him toe socks.

While I was with Peter and his family I also saw something I rarely see in mainstream dementia services – mirroring. This is where those communicating with the person mirror their non-verbal signals, enabling the person to feel that those around them have a real rapport and connection with them and share their emotions and ideas, giving the person a greater sense of engagement and belonging. True mirroring is subconscious, and is very different from imitation, which is a conscious effort to copy a person that can be very disrespectful.

It was fascinating to watch Peter and his siblings communicating, proving that a lack of speech is no barrier to a deep and loving connection that hopefully ensures that Peter feels understood, valued and never, ever ignored. Granted, Peter and his family have had years to adapt and refine how they communicate with each other, and listening to their story it certainly hasn’t been easy, but the message I took away from meeting them was that no matter how difficult the circumstances, if you are creative in your approach, focused on what is possible (rather than dwelling on what isn’t), and prepared to adapt and change, you will find those moments of connection that may have seemed illusive. 

Of course when you’re thinking about supporting a loved one with dementia, or as a professional working in dementia care and support, the greatest difficulty is often that dementia is a bit like shifting sands - as fast as you find a breakthrough, something changes and you need to re-evaluate and try something new. Rapid change isn’t something Peter's family have had to cope with as yet, but we certainly had that with my dad.

So, what does all this mean for someone currently supporting a person, with or without dementia, for whom verbal communication is now limited or non-existent. For me, the best first step is observation. The time you might otherwise spend thinking of what you want to say, saying it and trying, perhaps in vain, to be understood needs instead to be spent observing the person. 

Never starring, just discreet observation, taking in everything about the person, what they are doing with their body (or not doing that is otherwise usual for them) and what they are telling you through those movements, perhaps wanting something or someone, indicating that something is wrong (or right, don’t miss the positive things too) or giving non-verbal clues that something is missing. Think of this like an unfinished sentence - how can you help the person finish what they are trying to communicate? You might need props like objects or pictures to assist you. 

Good observation won't just enhance your communication, it has many other benefits too as I wrote about in my 2015 blog, ‘Harnessing the power of observation’:

“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.”

Even for the best observers, taking in this level of detail undoubtedly takes practice - be prepared for a lot of trial and error, a lot of frustration for you and the person, and going down many blind alleys with what you think is meant but really isn’t at all. But for all the difficulties, it is worth it for those special moments where you do both understand each other. As I said in my ‘Don’t ignore me’ blog:

“It can be easy to ignore an expression that isn’t clearly spoken, but the price paid can be huge in terms of emotional, physical and mental distress to someone who is already vulnerable, often frustrated, and ultimately looking for understanding, appreciation and love.”

(*Name changed to protect identity)

Until next time...

You can follow me on Twitter: @bethyb1886
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The rainbow of dementia

This week will mark what would have been my dad’s 91st birthday, and later on in April, the 6th anniversary of his passing. These milestones have left me reflecting on the last 19 years of dad’s life, how dementia crept into his life and year by year gradually overwhelmed him.

The picture painted of dementia in 2018 seems to have two distinct hues - the brightness of those who are living well, or as well as they can, and the darkness of those nearing the end of their lives, with the multiple physical health problems that I remember only too well. Yet as I think back over those 19 years, it was never as simple as two different hues for my dad.

If anything, it was much more like a rainbow, with the red roughly representing the beginning of my dad’s dementia (which was a gradual onset rather than a distinct change from one day to the next) and the violet representing the end of dad’s life. As the curves change colour, and reduce in size, so my dad’s dementia deteriorated, leaving him with fewer skills and more struggles.

Why a rainbow though you might wonder? It’s bright and cheerful and associated with the freshness and beauty that follows the darkness and rain. I certainly haven’t chosen it because I’m a 100 percent devotee of optimism where dementia is concerned. My positivity has always been tempered by stark memories of times that whilst difficult for me, were undoubtedly far worse for my dad.

I’ve chosen a rainbow because to me it represents balance: The brightness of the colours suggests something special and positive is possible at any point in a person’s dementia, but the reducing curves remind us that the struggles, or the paddling as my friend Kate Swaffer describes it, only becomes more pronounced.

If I think about my dad’s 19 years with dementia - certainly for the majority of the first 10 years - whilst the difficulties gradually increased, my dad had independence, looked after himself reasonably well for maybe five of those years, could read and write for the early years, follow TV programmes and sports, had a fairly good command of language, was able to participate in conversations, and certainly wasn’t slow in articulating his viewpoints. By 2018 standards, he would have made a good Dementia Diarist, a popular DEEP (Dementia Engagement and Empowerment Project) or DAI  (Dementia Alliance International) member, and an engaging public speaker (although my optimism on all of these fronts is tempered by knowing that my dad was a fairly private man by nature, so maybe wouldn’t have wanted to speak publicly).

Those are probably the red, orange and yellow years. By the time we get to the green and blue on the rainbow, dad’s in and out of hospital, and moving from a residential care home to a nursing home. For my dad, the key turning point is his larger stroke, and from that day confusion, communication difficulties, urinary incontinence, changed behaviour and a whole raft of inappropriate interventions (most notably antipsychotic medication) follow. My dad is becoming a much more stereotypical example of what society thinks about when it thinks about a person with dementia.

The indigo and violet years are characterised by further physical decline, with immobility, double incontinence and four years of dysphagia for my dad to cope with before the end of his life. This is the picture most people conjure up when they or a loved one are diagnosed. But as much as the ‘red’ years don’t go on forever, so most people with dementia don’t jump from ‘red’ to ‘violet’ either.

I am a great believer in seeing every face of dementia for what it is: The person living as well as they can in the red to green curves of the rainbow is giving hope to every single individual who has just been diagnosed or will be in the future. Without that hope, everyone just fast forwards to a picture of what 'violet' looks like, and that is only going to lead to more rapid deterioration with the added pain of potentially severe depression, hopelessness and even suicidal thoughts.

The person living in the blue to violet curves is never going to offer the same type of hope. They are coping with a greater array of physical health problems and are increasingly reliant on others for their care and support. Our perception is that brightness is fading, but what we learn from these individuals about the human spirit is perhaps even greater than their more articulate peers. Moreover, the qualities we find in ourselves from becoming caregivers represents invaluable, albeit sometimes very painful, life lessons.

Aside from my dad and the people I’ve known personally who are affected by dementia, I’ve met so many other individuals through my professional work who are living with dementia, coping (or not coping, and yes, sometimes suffering) and every single person has taught me something. As my dad took his last breaths I learnt about peaceful serenity. As I see a person living with dementia giving a conference speech, I learn about their strength to stand there and tell their story (often without notes, something I cannot do). As I see a person living with dementia in a care home trying to regain mobility after a broken hip, I learn about determination. As I read a book, a blog, or a social media post from a person with dementia who is laying bare their personal experiences, I learn more about living with dementia than I ever could from a textbook. As I see someone managing a few mouthfuls of food, and breaking out into a satisfied smile that they’ve outwitted dysphagia for one mealtime, I see a will to go on living despite the obvious struggles.

When my dad's life started to change, which in hindsight was when he began developing dementia, I had no idea we had 19 years ahead of us. As every year went by, we just tried to make the most of whatever situation we found ourselves in and give dad the best quality of life possible. I certainly don’t think we always managed that, and I dearly wish I’d known then what I know now.

Did my dad live well? Yes sometimes. Did he suffer? Yes sometimes. But when I reflect now, the fact that it’s a rainbow I gravitate towards, feeling an affinity with the brightness rather than the reducing curves, reminds me that although dad is gone we lived those 19 years together, and for all their ups and downs there was a beauty in the love that bound us together and that shines on.

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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