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...

You can follow me on Twitter: @bethyb1886

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Remember me

My dad's legacy

Since 2012, this slide is how I have finished many a presentation at a conference or event. It's a simple philosophy, but a highly effective one at helping audiences remain grounded in the most vital aspect of any dementia-related discussion – the need to remember the person.

 

Remembering the person one of the topics of this year’s World Alzheimer’s Month (or World Dementia Month as I would prefer it to be called). For me, not a day goes by when I don't remember my dad, either through my personal reflections or through my work. I find that keeping my dad's memory alive, and helping others to learn from our experiences, is not only extremely cathartic but an amazing opportunity to help others that is really unlike anything else I could possibly do with my life.

 

I am mindful, however, that for some people whose loved ones have passed away having lived with dementia, remembering those relatives can be an acutely painful experience. We all experience dementia differently, and observe our loved ones through our own unique vision of them; for some people the pain, heartbreak and sadness is all they see and all they can remember.

 

Whilst I never deny the difficulties, sadness and heartbreak that accompanied my dad’s life with dementia - and actually frequently find that people would rather hear about those elements than the positives - it is the more positive aspects of my dad's life and care that I feel potentially offer the greatest insight, not least because despite all the awareness raising work that has happened around dementia, negative perceptions still outweigh positive ones.

 

For people whose loved ones are living with dementia now, if the positive messages don’t reach their ears and eyes, how are they to feel any hope, any sense of being able to live in the moment, and any way of appreciating how there are positive aspects to be found and enjoyed, if only you can find them and capture them, for however long they last?

 

Me and my dad

Without having those positive influences, so many families feel bereft, and often some family members will walk away from the person with the diagnosis. This leaves any remaining relatives to manage as best they can, and for the person with dementia to be condemned to feeling as though they’ve done something wrong. It’s no one’s fault that they develop dementia, but sometimes human emotions can be strangely mercurial in difficult circumstances.

 

I always feel immensely sad when I read about or talk to people who are really struggling to remember their loved one with dementia while that person is still alive. People sometimes hope distance brings closure, but if someone has been an important part of your life they can’t just be airbrushed out. Not everyone feels a natural inclination to stand by a loved one after a diagnosis of dementia, or indeed even just keep in touch, but some of those people perhaps just need a bit more support to see the difference they have the potential to make.

 

In my view, as networks, communities and societies we all have a responsibility here, because while the negative tidal wave of perceptions regarding dementia continues, it proliferates myths, intolerance and stigma, not to mention creating divisions that often wound people deeply, long after their loved one with dementia may have passed away. 

 

So, if you only do one thing this September for World Alzheimer’s Month, make it to put in that phone call, or write that letter, or make that visit, that says you haven’t forgotten a person you know who is currently living with dementia. And if you’re in the position I’m in with my dad and the person you loved is no longer here, think back, find that positive moment and tell people in your networks about it. 

 

We all have the potential to be the change we want to see, and from the smallest actions the greatest difference is often made. 

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Playing the numbers game

I write this blog on the cusp of September which is the 4^th World Alzheimer’s Month, a yearly international campaign to raise awareness and challenge stigma. Two announcements in August, both around prevalence, have kept dementia in the news. In case you missed them, here are the links: The Lancet and Alzheimer’s Disease International.

I’ve written before about my scepticism of dementia statistics. I am particularly wary of prevalence data and the dreaded ‘predicted’ numbers of people expected to develop dementia. I don’t feel the methodology behind many of these figures is anywhere near as robust as it should be, and whilst numbers make great headlines, I don’t feel they serve wider society well. In fact I’ve often wondered why we see so many statistics on the numbers of people predicted to develop dementia and yet so few figures for the numbers of services available, or the availability and uptake of different methods for living well with dementia.

Last time prevalence figures were revised downwards, I heard many whisperings of discontent from those who either work within or on the periphery of English dementia policy. It’s astonishing to consider that some people might not welcome such data, however questionable the methodology behind it is, but then dementia has been on an almost unstoppable bandwagon of negativity and doom and gloom headlines ever since the PM’s Dementia Challenge ignited unprecedented interest in the ‘D’ word.

The prospect that less people than previously thought may now go on to develop dementia in the UK is something to be applauded in my view, although I’m not convinced it has anything to do with lifestyle modifications being made by the population. I suspect these new predictions are just attempting to correct previously dubious data. I’d love to think that the population are taking precautions to improve their health by following preventative advice relating to diet, exercise and lifestyle, but I personally don’t feel those messages are anywhere near as embedded as they should, or need, to be.

Meanwhile of course, the Alzheimer’s Disease International (ADI) report paints a picture of increasing rates of dementia worldwide, and highlights how low and middle income countries in particular are likely to be affected by growing rates of dementia development in the years ahead. Without the health and care infrastructure we enjoy in the UK (however fragmented it is), not to mention lower levels of education and awareness, these predictions from ADI seem eminently sensible, albeit offering a huge challenge to the global community to try and offer people at risk of developing dementia, or already living with dementia, in these countries a chance to live a better life than they might otherwise have access to.

So how do we unpick all of this and become more informed citizens? A good place to start is by ignoring headlines that predict doom one day and a cure the next, and that play the numbers game by quoting figures that may appear very authoritative but in essence are based on what mostly amounts to some very complex analytical guesswork. In the same way that the rhetoric of loss associated with dementia and so avidly repeated in the media does nothing to help families navigate their way with dementia in positive and practical ways. The recent 'Dementiaville' programme was a classic example – if they told us once that the families featured were losing their loved ones to dementia they told us a hundred times.

Looking back, I suspect part of the reason why I was able to enjoy time with my dad in his latter years with dementia, and look back so fondly on much of what we did together is precisely because I didn’t inwardly digest statistics and negative portrayals of dementia. In saying that, I don’t for one moment underestimate the impact dementia has, it changed my father’s life and the lives of those around him in immeasurable ways, but it didn’t consume me. Living and loving and taking each day as it came was my coping strategy, not that I realised it at the time.

Whatever the rate of dementia prevalence is in the years ahead, it won’t change the fundamentals of living with dementia, and if cuts in social care services and our over-stretched NHS are anything to go by, whether the predictions of dementia prevalence are high or low doesn’t stop people being denied the care and support that they need. 

If anything we should to be less hung up on numbers and more focused on people. We also need to spend a lot more time and resources on those positive public health messages that are designed to keep people healthier for longer, and an awful lot more energy publicising and replicating some of the really great care and support mechanisms for dementia that a few people have access to but that many others do not.

Until next time...

You can follow me on Twitter: @bethyb1886

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