Spotting dementia

My last D4Dementia blog was all about remembering the person, and as World Alzheimer’s Month draws to a close for 2015, I want to tackle another theme from this month of awareness raising – spotting the signs of dementia.

I’ve written previously about the symptoms of dementia, and I don’t want to replicate the information given in that blog post. If you are concerned that you may be developing dementia, or indeed that a person close to you could be, then you may find the information in that blog post helpful.

What I want to explore is the various prevailing attitudes around spotting the signs of dementia, and some of the issues around diagnosis, particularly in relation to health and social care professionals. In my work I see many different sides of the diagnosis coin, from people who are diagnosed in a timely and appropriate way to others who have to fight for a diagnosis. There is also another group who are perhaps best summed up as the ‘worried well’.

One of the most unfortunate side-effects of the fantastic work that’s been done to raise awareness of dementia in the UK is that there is, occasionally, a tendency to see any irregular lapses in memory or changes to a person’s approach to day-to-day life as the beginnings of dementia. Sometimes dementia may be behind such lapses or changes, or indeed MCI (Mild Cognitive Impairment - which isn’t dementia and may never lead to dementia), but it is also important to remember that as human beings we don’t live in a laboratory and are exposed to numerous other factors in our lives that can adversely affect us in ways that may appear to be related to dementia.

I have been reminded of this on more than one occasion so far in 2015 as I’ve gone about some of my consultancy work. I often visit care homes with a remit related to the provision of dementia care and support, and sometimes staff will detail concerns they have about a particular person in their care. From the outset I always say that concerns, no matter how trivial they may seem to the person relaying them, are always valid, and I would much rather social care staff are alert to changes in a person’s health and wellbeing than simply ignoring them.  

However, we must always remember that other medical conditions, side-effects of medication (and particularly multiple medications that stray into polypharmacy), spells in hospital, changes in living accommodation, changes in family relationships or bereavement, and even changes in the care home itself (different staff, routines or redecoration) can cause temporary, and sometimes more long-term, negative effects for older people. 

Those effects may appear to be related to dementia, and of course the development of dementia can co-exist with any of the factors I’ve listed above, but jumping to conclusions isn’t helpful for anyone, not least the older person living in that care home who is perhaps already feeling like they're living under a sizable microscope. Documenting changes to build up a reliable picture, whilst utilising person-centred care skills to address any newly found deficiencies in the person’s care or environment (more one-to-one time, reviewing health/medication, making time to talk and listen to the person, offering comfort, occupation etc) is perhaps more helpful than immediately chasing after a diagnostic label.

The flip side of these circumstances is often something I hear about when family members contact me with concerns about a loved one who is (usually) living alone. Often they will have noticed changes over a considerable period of time, and found themselves gradually providing more and more care for their loved one. For many people, input from their GP, alongside some diagnostic tests and perhaps a referral to a memory clinic is the way in which those concerns are addressed.

But unfortunately that isn’t the case for everyone. Amongst the many families who’ve contact me this year was one who’d had the input of two GP’s over a considerable period of time, with both doctors coming to the conclusion that the individual giving concern wasn’t developing dementia. This was despite, to the best knowledge of the family, neither GP conducting the full range of tests and assessments – potentially, of course, because the person concerned didn’t consent to them.

What happens between a doctor and their patient is of course confidential, and therefore my anecdote will always be open to questioning and counter argument. My main concern, however, is for the individual concerned, whose state of health is putting them at risk of living in an unclean, unhealthy and potentially dangerous environment, and for the family who are struggling to provide the support their loved one needs because they simply aren’t supported themselves.

Whether a diagnosis of dementia is ever forthcoming or not for this person isn’t really the main problem. In theory of course a diagnosis should open doors to care and support, possibly even some medication, but frankly care and support should be there regardless of the judgement of this person’s GP when the family as a whole have clear and unequivocal social care needs.

Hopefully the advice I’ve provided will help this family, and of course you can’t fight everyone’s battles, but I think these two examples really show how polarised and fragmented the situation around spotting and diagnosing dementia remains, and that’s just in the UK. I’d be the first to acknowledge that significant strides have been made since the 10 years that my dad went without his diagnosis, but the spotting of dementia still remains a subjective and sometimes inaccurate art that verges between too much enthusiasm to diagnose and total oblivion to the blindingly obvious.

As awareness-raising messages about spotting the signs of dementia are refined over the months and years ahead, some sensible middle ground is undoubtedly needed.

Until next time...

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An elephant never forgets... but sometimes humans do…

So here we are in 2015, with all the usual hopes for improvements in services and support for people with dementia and their families. It's tempting to write my first blog of the year on what needs to happen to enable everyone with dementia in the UK to live well, but I want to kick off 2015 by transporting you to South Africa where I was incredibly fortunate to spend last Christmas and New Year.

I had never travelled so far before, or had such a long holiday - well, carers generally don't do they? The purpose wasn't primarily about sun, sea or sightseeing, but to spend time with my partner's family, particularly his parents - the other elements came as an added bonus.

Spotted on my Kruger Park Safari

Foremost in my mind was a plan to put my work to one side, leave my campaigning and awareness raising in the UK, and switch off from everything related to dementia. It's been such a huge part of my life, both personally and professionally, for as long as I can remember so a complete break seemed a great idea. What I discovered, however, is that it's amazing how the things you are really passionate about seem to find you, even in distant lands. 

There I was browsing in a shop in a rustic lifestyle centre near a rural African town when I discovered small purple packages bearing the message:

'An elephant never forgets... but sometimes humans do…'.

An elephant never forgets... but sometimes humans do...

Inside the packages were little necklaces and the following explanation: 

"Creating awareness for Alzheimer's and Dementia

An initiative by Red Bush Jewellery (www.redbushjewellery.co.za) to create awareness of Alzheimer's... the proceeds of the sale of these necklaces will go to The Living Cornerstone facility based in Sedgefield, Western Cape, South Africa, which specialises in the care of these people (www.thelivingcornerstone.co.za).

Alzheimer's disease damages the brain. It causes a steady loss of memory and how well you can think and do your daily activities.

It is a debilitating disease for the sufferer as well as for his or her family and caregiver. It is not easy to accept that your loved one will be there in body but not in mind. It is hard to think that someone you have known all your life will eventually not know who you are.

The Living Cornerstone is there to help families cope with the inevitable, to lighten the load and provide a secure environment where sufferers can be cared for in a loving, stimulating, homely atmosphere, a real home-from-home ambience."

My elephant necklace - Raising awareness of dementia in South Africa

Admittedly the language and in particular the use of the word 'sufferers' isn't reflective of current thinking, but putting that to one side, everything about this made me smile. There, in the heart of rural Africa, someone had decided to do their bit to raise awareness of dementia, and I can only imagine just how vast that task is.

Everything in South Africa feels huge - sweeping landscapes, lakes and rivers as far as the eye can see, towns and townships that spread out before you in what feels like a never-ending picture. And I only saw a tiny fraction of what this country, with a population of over 52 million people and a land area of over 1.2 million square kilometres, actually consists of. 

Seeing the way many of the poor people live my mind was inevitably draw into wondering how on earth you would begin to support a relative who is living with dementia when even getting clean water is a daily struggle. Awareness and understanding of the different forms of dementia, never mind accurate diagnosis, is likely to be alien to most people. The effect of that on a person with dementia, when they are unlikely to know what is happening to their brain and potentially are subjected to a lot of prejudice, misinformed beliefs and experimental ‘cures’ is likely to be about as far removed from ‘living well’ as we could possibly imagine.

That viewpoint was reinforced during a conversation I had with a lovely lady from Swaziland. She asked me what I did for work, and I began by telling her about my dad. Despite speaking perfect English she had never encountered the word ‘dementia’ and asked me what it was. In explaining to her I discovered that she didn’t know that a person’s brain could undergo these changes, or of any similar disease or condition going by a different native or traditional name.

All of this just reminded me that it's easy to live in our little bubble of heightened dementia awareness, diagnosis targets, battles over health and social care provision, and excitement at breakthroughs in research. We are informed (even if at times it doesn't feel like it), with treatments and therapies to fight for (albeit limited), and a standard of care that we expect (even if we don't always get it).

As the necklace packaging says, ‘An elephant never forgets… but sometimes humans do...’ Meant in the context of dementia awareness in a rural African area it is a priceless message. But it also has huge value in the UK too – as a reminder of how far we have come as an awareness-raising country, and how for so many other people around the world there is so much more that needs to be done if they are to ever live well with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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The corners of your mind

I’m a bit of a fan of all things vintage, as you might have gathered given my love of our older generations. Music is no exception to this rule, hence the title of this blog post coming from a much loved song, ‘The way we were’.

 

 

I’ve always felt that the lyrics to this song are a rather poignant reminder of how life changes through the years. It also has important meanings in relation to our memories, the invisible library that lives within our brain and chronicles our lives. Should dementia ever set in, that library becomes muddled, and eventually toms of knowledge are like books that have been borrowed from the library and never returned. The person with dementia then becomes a bit like a frantic librarian, trying desperately to remember where they have stored the particular segment of knowledge that is required.

I wrote in 'Loving our elders and betters' about how, when an older person dies, "It is as if a library has burnt down." Many people would argue that dementia is like a slow burn, very gradually turning memories to cinders, often initially with little physical evidence of the ‘fire’ taking place. Given the choice I think some people facing such a future would rather experience a giant inferno that engulfs their lives with such rapidity that they have no idea that it has even happened, but dementia is rarely like that.

It teases the mind, allowing us to retain selected memories, often those going back many years, but not always the most useful ones. Those crucial practical memories of how to undertake and successfully complete tasks may go very early, as can memories of what we did or said a minute, hour, day or week ago. The precious memories of key life events, and key individuals in our lives, may also end up being filed under absent.

Being deprived of that last set of memories is particularly painful because they characterise our lives and us as individuals. They act as a safety blanket, giving us a place to meander into during those quiet moments of reflection, or provide thoughts of positivity and strength when we are feeling vulnerable or worried. We want to be able to remember people, places and things that are important to us, knowledge we have studied hard to acquire or experiences we want to be able to pass on, but dementia has other ideas.

Memory problems are something we generally – and wrongly - associate with ageing, as I wrote about here. Moreover, I think that throughout our lives many of us are guilty of taking our own memory for granted, and in our interactions with others we readily expect their mind to perform with seamless speed and accuracy. We don’t have time or patience for a hunt around someone else's personal library – we want our information instantly, and not being able to deliver that often leads to the belief that someone is unintelligent, useless, worthless or stupid.

However dementia, and the way in which it can affect our memories, can hit anyone and not just in old age. Having a previously brilliant brain is no guarantee that you won’t get dementia. I’ve met leading doctors, academics and businessmen who are living with dementia – all had hugely admired brains that have now been ravaged. My dad, whilst never a man of high academic standing, had a truly impressive mind – his knowledge of the countryside, farming and animals was second to none. His wisdom was a gift that as a child I never really appreciated. Now it’s gone, I miss it more than words can say.

The corners of our minds harbour things that we may think we will never need, but each memory has its place and importance and being without any of them will adversely affect our lives at some point. We talk a lot about memory ‘loss’ in dementia like it is something that can be found again. Sadly even for people who achieve respite or improvement from their symptoms through therapeutic interventions, they are still living with a terminal disease that is characterised by eventual decline.

What I admire most, however, is the way in which many people with dementia try to guard against this, always working to prevent dementia steeling more books from their memory library. I think as outsiders looking in, we often don’t realise just how hard people with dementia try in order to maintain normality and keep all of those important memories alive. For many, notebooks and post-it notes become their allies – the feeling being that what cannot be remembered must be written down.

Increasingly I think technology (smartphones, tablets and other handheld devices) will have a role to play, particularly for people who are diagnosed with younger onset dementia and are already used to leading very technological lives. However, I think nothing will ever really beat our loved ones for helping to keep memories alive and effectively providing a 'Back Up Brain'* for us all, regardless of whether we develop dementia or not.

Dementia has the power to literally re-write and remove our memories, twisting, confusing and manipulating those precious nuggets of understanding and experience that we build up over our lives. As the song tells us, "Memories may be beautiful and yet, what’s too painful to remember, we simply choose to forget." Having that choice is a wonderful thing that we should never take for granted. 

Until next time...

You can follow me on Twitter: @bethyb1886

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*Back Up Brain – BUB –  is a phrase borrowed from my inspirational friend Kate Swaffer, an Australian lady living with young-onset dementia for whom her husband is her primary BUB. I would recommend checking out Kate’s blog http://kateswaffer.com/daily-blog/.

The ageing mind

Given that dementia is one of the diseases that people fear the most, there is a very strange acceptance that we will all have ‘memory problems’ as we get older. Indeed the government’s National Clinical Director for Dementia, Alistair Burns, recently said in a meeting with myself and other colleagues that "by the time he got memory problems" he hoped that all the work he has done to revolutionise dementia care in the UK would have come to fruition.

Personally, I have always found it curious that memory problems are so associated with old age. Many people of my generation and much younger struggle to remember all kinds of day-to-day things, with such lapses sometimes impacting very negatively on their work or relationships. For some people that forgetfulness is as a result of enjoying a little too much alcohol, often with the intention of ‘drinking to forget’. In those circumstances forgetfulness is somehow celebrated by the young, yet in our older generations it is considered a weakness by society.

So are we perpetuating a myth by bracketing a decline in memory with growing older? Obviously as we get older all our organs, including our brains, can begin to show the effects of having worked so hard for all those previous years. Lapses, small failings and those ‘what did I come into this room for’ moments affect everyone at some time in their lives, but memory problems alone do not necessarily mean that someone has dementia or will go on to develop it.

Associating memory problems with older age also has much darker connotations. Memory problems in all their forms, from the mildest to the most serious, can often lead to the assumption that the person is stupid. It is a myth that haunts dementia to this day, and one that is wholly inaccurate. Moreover, if you take that one step further and assume that all older people have memory problems, it is no wonder that much of our society believes that our older generation have less worth than their younger counterparts.

As in so many matters, whilst the young can ‘get away with it’, our older people are usually judged the most harshly. Moreover, once those widespread assumptions are made about the abilities of our older people to be able to engage their brains, they then find themselves largely excluded from decisions that affect them, particularly but certainly not exclusively, in health and social care.

Take for example the current controversies around dementia ‘screening’ (something that I will be blogging about in the near future). Has anyone asked the population over 75 what they think about these proposals? Probably not, and if they have, I very much doubt anyone listened to the response. Yet with an ageing population, the ‘grey vote’ as it is so patronisingly described will have an ever increasing say in the futures of our politicians. Perhaps it is time for policy makers to offer a little more respect, and authority, to their elders and betters.

So how do our older generation fight back against the assumptions being made about their memory? All the best advice I’ve ever heard about keeping your brain in tip-top shape largely revolves around the standard recommendations for a healthy diet, plenty of exercise, reducing stress and getting enough sleep, but what really stands out for me is the part about socialising.

A roaring social life, even better than you had in your teens and twenties, is the sort of prescription I think most people would like from their doctor. No longer is ageing all about growing old gracefully – it’s about getting out and singing, dancing, acting, volunteering, campaigning, getting involved in community projects, and putting the world to rights with friends in coffee shops and mates down the pub.

The benefits of socialising shouldn’t just be confined to those trying to prevent memory problems however. If anything social interaction becomes even MORE vital for those people who already have memory problems that form part of living with dementia. Yet this can be the one time in someone’s life when they are least likely to have opportunities to socialise or be accepted by their community if they try to.

How ironic that the isolation many older people feel, whether they already have issues with their memory or not, is effectively increasing the numbers of people with memory problems and the severity of their symptoms. Moreover, the widespread assumptions being made about older people developing memory problems has the potential to turn into the sort of self-fulfilling prophesy that marginalises our older generation even more. We should be supporting our older citizens to lead full and active lives within their communities and, most importantly of all, make the best of every asset that they have, including their memory.

Until next time...

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NCD (Otherwise known as dementia)

It was only ever going to be a matter of time before the increased profile of dementia brought about a renaming of it. Thanks to the American Psychiatric Association (Representing 36,000 physician leaders in mental health) their newest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will, from May 2013, term dementia as ‘major or minor neurocognitive disorder’.

Why? It is believed that the term dementia is stigmatising to people living with it and is not well accepted. The idea of the new terminology is to focus on the decline from a previous level of functioning as opposed to a deficit. It is also designed to better reflect the variations in the different dementias, rather than emphasising the need for memory impairment to be present for a diagnosis to be made (in some forms of dementia, memory problems are not the first symptom).

It is also worth pointing out that dementia has been successfully renamed in Japan (The old word for dementia ‘chihou’ meant stupid. The New word ‘ninchisho’ introduced in 2004 means cognitive impairment). So all well and good then. Or is it? If you are scratching your head in amazement, believe me you are not the only one. Science meets semantics meets political correctness meets, in my case, frustration. I do not believe that this is a helpful step forward. It is playing with words and creating unnecessary debate whilst the real issues, that are frankly much more difficult to tackle than name changes, compete for attention.

It is true that many people avoid seeking a diagnosis through fear and stigma, but changing a name will not remove that. The root of fearfulness comes from the concerns people have that there will be no support for them as they navigate their way through their journey with this disease, a journey that most never expected to make and are not prepared for. Supporting someone in their present situation, and helping them to plan for the future, is where every effort and resource should be directed if we are really serious about improving the lives of people with dementia.

There is an argument that the Latin origins of the word dementia are in themselves stigmatising. I suspect, however, that most people do not go home and look up dementia in the dictionary when they have a diagnosis of it. Certainly when my father was diagnosed we were united with him in not dwelling on the label attached to his symptoms. We were far more concerned about what the future would hold - how could we support him, where would we find support ourselves, and how would we adjust to the huge change in all our lives?

As for dad, he was only interested in walking, eating, talking, singing and getting on with things – we never sat and discussed the definition of dementia with him and he was totally unmoved by references to it. We had absolutely no problem in telling friends and family that he had dementia (by the time dad was diagnosed he did not have the ability to tell people himself). On breaking that news, my view was that if anyone had an issue with it that was their affair; I had no time or energy to waste on those with small-minded attitudes.

Dementia in itself may not be a perfect word for our present day understanding of this disease, but there comes a point when you have to accept that there may never be a perfect way to describe symptoms that most people will find distressing no matter what you call them. Major or minor neurocognitive disorder will no doubt also find objections. Adding ‘disorder’ to the proposed new name for dementia has its own negative connotations, the introduction of the words ‘major’ and ‘minor’ could confuse people about the severity of their neurocognitive disorder and long-term prognosis, whilst the sheer mouthful of the full name will bemuse many. At best this will lead to the abbreviation NCD, and in many cases, it will result in the explanation, “Otherwise known as dementia.”

If dementia could be associated with care, compassion, kindness, understanding, fairness and opportunity then I think the word would be seen in a similar light to the way in which cancer is now. So much good work is being done to raise the profile of dementia, and I am a firm believer that in all matters of awareness, care and training we should keep language simple (as I wrote about here). Working to explain what dementia means from a practical point of view, and how people can genuinely live well with it is actually far more relevant than the umbrella term for a group of symptoms.

Personally I have no vested interest in decisions over terminology. Whatever the disease we currently know as dementia is called in the future will not affect what I do – my interest is broadly in our older population, particularly people with dementia and their families, and how we can make their lives better. Having walked their path, I know what was important to me over the 19 years of my father’s dementia, and what his symptoms were called did not enter into that.

All of this makes me wonder who would be the winners from ‘re-branding’ dementia? Pharmaceutical companies? Advertising and marketing executives? Businesses that make and print promotional materials? People who are paid to sit in rooms and dream up new ideas? In fact pretty much everyone bar the people who really matter - people with dementia and their families. I suspect that they will just roll their eyes, bemoan the spending of precious budgets on calling dementia something else, and continue to struggle on in their daily lives. Sadly for many, struggle is the optimum word in that sentence, and alleviating that is where all our focus, energy and money should be directed.

Until next time...

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