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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Researching dementia

Last week statistics were released showing that during the last year 22,000 people took part in dementia research – a 60% rise - and that 10,000 people have signed up to Join Dementia Research.

Research isn’t a topic that I’ve written about extensively, which perhaps isn’t surprising given that I’m not a scientist or an academic. That doesn’t mean I have no interest in it, however. Aside from the very obvious personal feeling I have that I don’t want others to go through what my dad went through (particularly in the latter years of his dementia), I am an ambassador for dementia research charity BRACE, whose work I am constantly in awe of, and I write and speak extensively about the fact that, in reality, we actually know alarmingly little about dementia. 

This lack of knowledge has many causes, which include the historic lack of focus on dementia, the even greater lack of money put into dementia research in the past, and the sheer complexity that the many forms of dementia present to even the most scientific or academic brain. Studies have started and never produced results, and in terms of pharmaceuticals, drug trials have been abandoned due to unforeseen circumstances – for example drugs not producing the effects expected or unacceptable side-effects.

I have never been a person greatly influenced by the work of pharmaceuticals, although I do acknowledge that many people are supportive of the current (limited) drugs that are available and of course any new breakthroughs – like for example Eli Lilly’s Solanezumab drug announcement at the recent Alzheimer’s Association International Conference – are of course to be welcomed if indeed there is widespread benefit to be had for people with Alzheimer’s Disease in the future.

This is, however, such a tiny part of the overall picture. With so many different forms of dementia, and different nuances in how each person with a particular form of dementia experiences their symptoms, there is so much more that needs to be determined before we can honestly say that our understanding, and treatment for, the many different types of dementia has progressed to the point that we have reached for the many different types of cancer.

With that in mind, any increase in the numbers of research participants is extremely important, and I suspect is largely down to the profile dementia now has that it simply never had in the past. So what are the benefits of being involved in dementia research?

For people with dementia:

Many people I know who are living with dementia have actively sought to be involved in research. These individuals often describe involvement in research as an opportunity to feel useful, to be proactive after diagnosis and with the potential to make a difference to the lives of others now and in the future.

For families of people living with dementia:

Because a diagnosis of dementia impacts far and wide beyond the person with the diagnosis, many family members feel they want to do something that helps them to contribute to the wider understanding of dementia. Some people also view research as an opportunity broaden their own knowledge.

For society as a whole:

As dementia seeps into the public consciousness like never before, more individuals are learning about dementia and recognising that, as the numbers of people being diagnosed increases they, or someone they love, may also develop dementia in the future. To be able to help improve understanding and treatment is a powerful motivating factor.

So much of research really is about the future, and future-proofing health is often in the forefront of the minds of both researchers and participants, but I would sound a note of caution. While we think about improving health for the future, and ideally finding the treatments and potentially even cures for the different forms of dementia, we must never forget the people who are living with dementia NOW. 

Their needs are as important as our own need to avoid developing dementia in the future, and research into living well, lifestyle strategies, non-pharmacological therapies and care and support that focuses on improving quality of life is what is likely to benefit these individuals the most. I recall when my dad was alive, and particularly in the latter years of his dementia, the headlines about research ‘breakthroughs’ pretty much went over my head. They were utterly irrelevant for dad, who was my primary concern at that time, and although I don’t in any way dismiss genuine breakthroughs now, I have an equally strong sense that helping people in the  future doesn’t mean we neglect those living with dementia in the present.

Research for people living with dementia now, people living with dementia in the future, prevention of dementia and the many different aspects of treatment and care needs to be as broad as the participants signing up to participate in dementia research. That, for me, is the blueprint for a dementia research strategy that is befitting of the task ahead of us, and one that also does justice to the many people, like my dad, who have lived and died with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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Holiday season

August in the UK is traditionally seen as the holiday month. Apart from the fact that most families with school-age children are restricted to holidaying at this time of year due to education regulations, there seems to be a mass desire to ‘get away’ in what is meant to be the height of the UK summer.

With this holiday season in mind, I thought it would be apt to explore the idea of holidays, past and present, in the context of people who are living with dementia. Vacations are seen as one of the most positive and enriching aspects of life from childhood to retirement, but how do they fit with the stigmatisation of dementia?

People who are newly diagnosed:

One of the aspects of life that people often feel will have to end once they are diagnosed with dementia is going away on holiday. Holidays are frequently seen as the preserve of the young and people who are healthy and retired, while many people with dementia are subjected to Prescribed Disengagement™ (as described by Kate Swaffer, a lady living with dementia) upon receiving their diagnosis.

Of course we’re all different, and holidays aren’t for everyone. Certainly my dad, a man who never travelled beyond the UK and even then was reluctant to ever go to new places, would have viewed a holiday as an endurance rather than a pleasure, but if you’re a person who enjoys going on holiday a diagnosis of dementia isn’t a reason to stop doing what gives you pleasure for as long as you feel able to continue with that.

The challenges of change when you’re on holiday:

As much as a person with dementia and their loved one(s) might want to go away on holiday, there is often anxiety on both sides about how the vacation will work out. Routine is very important, indeed vital, for many people with dementia, and holidays are naturally a break with that, although depending on the type of holiday you choose you might still be able to keep some familiar routines.

Other concerns are often around travelling arrangements and time spent travelling, differences in living accommodation (layout/comfort/design), the geography of the local area and the availability of familiar foods. Sleep patterns can also be disturbed in unfamiliar environments, and changes in temperature/climate can be problematic.

To help avoid conflicts and upsets, it’s important to understand what each person on the holiday wants out of it and think about where you are going to go very carefully. Choosing a venue that is used to supporting people with dementia and their loved one(s) should help to minimise problems and give you the peace of mind to look forward to your holiday. 

Some suggestions of such venues are here: http://www.dementiaadventure.co.uk/adventures/venues (Please note this link is provided for information, and should not be seen as an endorsement of any particular venue or activity). For additional options, it’s always worth investigating assisted holidays for people with disabilities – it may not seem like an obvious internet search, but some companies that support people with physical disabilities may also have the ability or contacts to support people who are living with dementia.

'Respite' / carer breaks:

There is a perception of ‘respite’ for family carers that is characterised by the person with dementia going into care while their family carer(s) go away for a break. Whilst this may be a model that suits some families perfectly, it is important to recognise that other families want to do things differently. They don’t necessarily want to be separated from their loved one and instead want to be supported to go away as a family.

This is just another example of where a one-size-fits-all approach really doesn’t work, and the individual needs and wishes of families have to be explored and wherever possible supported and facilitated. Many of the holiday venues I’ve listed above do exactly this, and hopefully we’ll see many more examples in the future.

The cost:

Cost is a significant factor for most people when they are looking at taking a holiday, and many of us save for many months or even years to afford to go away. Such saving doesn’t always fit in with the unpredictability of dementia, however, and many people who are diagnosed feel an urgency to fulfil some of their travelling dreams while they are still at the height of their cognitive powers.

Other cost considerations when a person’s dementia is more advanced can be around paying for professional care, or taking a larger than usual family group on holiday so that relatives can take turns in providing more intensive care and support.

In addition, given that dementia care comes under the umbrella of social care, which in the UK is means tested, many people may simply not be able to afford to have a holiday because all of their income/savings have been spent on modifications to their home or professional care fees.

Reminiscing about holidays:

Even if health or financial factors prevent a person with dementia taking a holiday, it doesn’t mean that the many positive aspects associated with holidays have to be abandoned. Reliving past holidays through photographs, family videos, scenic pictures hung on the wall, exotic cuisine or music that is synonymous with vacations gone by can all help to engender a holiday spirit. Think too about textures and sounds - sand, rocks and wave sounds might help to prompt reminiscence about trips to the beach.

A few care homes I’ve visited have gone even further, creating beach ‘installations’ complete with deckchairs, sand and sea pictures, and some are regularly visited by the ice-cream van selling the traditional 99p cone with vanilla ice-cream.

Of course nothing will replace the excitement, discovery or relaxation many of us experience when we go away on holiday, but keeping memories alive when going away is no longer possible can still help to engender some of the feel-good factors associated with holidays.

Until next time...

You can follow me on Twitter: @bethyb1886

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Why don’t we listen to people with dementia?

Before I get into the substance behind the title I’ve chosen for this blog post, I first want to acknowledge that there are organisations who do listen to people with dementia, and organisations exclusively made up of people with dementia who give those individuals a very prominent voice. However, in both of these instances, this remains a minority representation of people with dementia, and that’s the inspiration behind this blog post.

I chose the title, ‘Why don’t we listen to people with dementia’ purely because the majority of society doesn’t. Despite awareness-raising campaigns that have begun to change the perception of dementia, stigma still looms large, language is still used in a derogatory, belittling way that helps to re-enforce stigma, and people with dementia are largely talked about by others, or ignored completely.

Reflecting on my dad’s life with dementia, he never really had a voice. As a family we didn’t understand dementia for many of the 19 years dad was living with it (and certainly in the first 10 years before his diagnosis), so in essence we were just muddling along together. In the last few years of dad's life, when he lost his more vibrant communication abilities, we did our best to advocate for him, but I appreciate now, more than ever, that the very best we could ever have done for dad was to interpret for him, and where there is interpretation there is margin for error. 

The only true representation of each person’s unique experience of living with a diagnosis of dementia is from that person themselves. Anything else is a substitution.

I understand this more now thanks to some of the inspirational people I’ve been fortunate to meet who are living with dementia. Sharing my dad’s life gave me an education in dementia like none other, but with dad gone, some of the amazing people who are living with dementia that I've met since then help me to keep learning, and that is a gift more precious than I could ever describe.

I was recently asked to compere a launch event for two books – One by Shibley Rahman, an academic, called ‘Living better with dementia’ (which I’ve written a foreword for), and one by Kate Swaffer, a lady living with dementia, called ‘What the hell happened to my brain’. Kate lives in Australia, and I’ve followed her blog since 2012 – a more insightful read would be impossible to find, and I constantly recommend Kate’s writing to anyone looking to learn more about what it’s like to live with her particular experiences of dementia.

Kate Swaffer, Beth Britton and Shibley Rahman

Given the geographical distance between us I’d only ever seen Kate’s presentations on videos, so having the opportunity to listen to her in-person was truly special. Afterwards, I described Kate’s presentation as ‘awesome’ but I’m not sure that really even begins to do it justice.

I know Kate has had many struggles in being recognised and acknowledged as an authoritative individual in her own right, and even more astonishingly, openly demonised by some who disagree with her, frankly, very common sense views. Granted we are all entitled to our own opinions, but I cannot understand why anyone would think Kate shouldn’t share her experiences, or speak out on issues like the use of language around dementia or perceptions of ‘wandering’ and ‘challenging behaviour’. 

The discomfort around Kate’s advocacy for the rights of people with dementia seems to have its roots in the belief that questioning the status quo, the way things have always been ‘done’ and ‘described’, is somehow taboo. Yet surely the reason society has progressed so far in numerous areas of life like medicine, science and technology is precisely because someone decided to question the status quo, do something differently, and find remarkable results.

Like an ostrich, there seems to be a desire to bury heads in the sand, when in reality we should be thanking and applauding people like Kate for having the courage to speak out, and the wisdom to talk so much sense. And yes, the irony of that last statement isn’t lost on me, given that people with dementia have, historically, been seen as being unable to speak out and losing any wisdom they had once dementia is diagnosed.

At the moment I feel there is a perception that a person diagnosed with dementia somehow instantly progresses to having very advanced dementia, with all the communication difficulties that can entail which would make it very difficult to be an outspoken advocate of your personal experiences. In reality, however, for the majority of people diagnosed with dementia, progression is much slower, and the ability to speak out and contribute to debate, policy and the implementation of policy is potentially feasible for a significant period of time, depending on personal circumstances of course.

So where do we go from here? Organisations like DEEP (Dementia Engagement and Empowerment Project), The Scottish Dementia Working Group, the European Working Group of People with Dementia and Dementia Alliance International are increasingly finding that their membership, made up entirely of people who are living with dementia, are finding a voice, but in comparison to the numbers of people who are actually living with dementia, the proportion is tiny.

Amongst the total number of people living with dementia in England, I fully appreciate that the majority may well prefer to keep themselves to themselves – my dad would almost certainly fit into that category if he was still alive and newly diagnosed. People who are diagnosed at a younger age are often more widely heard voices, not least because individuals in that demographic may feel more confident in using social media and blogging. In the end, I’m not sure it matters so much who speaks up, just so long as every person with dementia has equal opportunity.

Then of course it is down to organisations, both national and local, governmental and private corporates (including dementia conference organisers), to listen, and that is perhaps the hardest part of all. Home truths don’t often sit easily, nor does challenging the status quo, as Kate Swaffer has already proven. But if we are ever to move beyond stigma and discrimination and towards a truly world-class model of support and care for people with dementia, then giving people with dementia a voice and listening to what they have to say really is the only place to start.

Until next time...

You can follow me on Twitter: @bethyb1886

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Mind the gap

Dementia making the headlines isn’t anything new and today’s make for fairly depressing, albeit highly predictable, reading. Anyone currently involved in dementia care in the UK, be that as a person with dementia, a family member supporting/caring for a person with dementia or a professional within health and social care, wouldn’t have been surprised to learn that findings from an Alzheimer’s Society survey of over 1,000 GP’s that was published today found the following: 

1.     There are big gaps in post-diagnosis support from health and social care services, with social care particularly singled out - two-thirds of GP’s surveyed said patients don't get enough provision from adult social services after a diagnosis.

2.     Unpaid carers (family, friends and neighbours) are being left to care for loved ones without the support they need.

3.     GP’s in areas that don’t have good post-diagnosis support provision are more reluctant to diagnose people with dementia or refer their patients to memory services for diagnosis.

Out of these headlines I suspect that council’s will be criticised for not providing enough social care support (which of course most councils are going to struggle to do in the current climate of austerity and huge cutbacks), carers will be given masses of sympathy (when in reality they would rather have action to help them not public pity), and GP’s will be lampooned for not offering more support themselves and not diagnosing patients who they may suspect have dementia (even though General Practice is under more pressure than it’s ever been in the history of the NHS).

 

Picking up on the diagnosis point, however, really gets to the heart of the issue for me. When dementia was first declared a governmental priority, the initial focus was on improving diagnosis. Fine, you might think, it’s important we diagnose people. Well yes, except that if you diagnose someone but offer them and their family no support all they have is a label to hang their symptoms from and absolutely no idea where to go next or how they might live well. 

 

Those issues then quickly fuel the problems that wider family networks have in providing support and care, and of course when the inevitable breakdown comes there is an increased need to utilise health and social care services, which are often either inaccessible, vastly over-subscribed or have disappeared as a result of cutbacks. Even when there is the possibility of localised support, there is often no one to help navigate complex health and social care systems, with GP’s under immense pressure and third sector organisations like Alzheimer’s Society, Dementia UK (Admiral Nurses) and others all needing additional funding from commissioners in order to offer the post-diagnostic support that they are equipped to provide.

 

I’d like to say there are some positives in this latest Alzheimer’s Society survey, but I can’t see any. Yet I don’t think it should be used as a stick to beat health and social care professionals with. That won’t help anyone, least of all the huge numbers of families who are needing support and just not getting it. The buck stops with government, and as I wrote about in the run up to the last election, I fear that many of our politicians just don’t understand the importance of social care and, whilst most are very sympathetic towards carers, the needs carers have - particularly around financial issues, access to training, equipment and breaks - are never comprehensively addressed in legislation.

 

Proper integration of health and social care services, rather than piecemeal promises, a decent carer’s allowance, legally enshrined employment protection for carers who are working alongside caring, freely available training and access to equipment and personalised breaks to help carers, and of course those all-important post-diagnostic services that aren’t subject to a postcode lottery and are personalised, innovative, flexible and based on best practice, are what people with dementia and their families need, and frankly have needed for as long as I can remember.

 

I have repeatedly argued that resolving any potential shortfall in diagnosis is intrinsically linked to post-diagnostic support. More people will come forward with potential dementia symptoms if they feel their local services are ready and willing to help them, and GP’s will naturally have more confidence with the diagnostic process if they know that the best interests of their patients will be served by giving them access to the care and support that they need. The key point here, though, is that the care and support actually needs to exist!

 

Allowing diagnosis and post-diagnostic support to get so compartmentalised was a huge mistake that’s leaving more families than ever before to pick up the post-diagnosis pieces alone. I suspect that diagnosis was seen as a ‘quick win’ in terms of statistics – by adopting case-finding in hospitals and GP’s surgeries, people who were developing dementia symptoms were always going to be identified in higher numbers than before such an exercise began.

 

Diagnosis was a major theme in the 2009 Dementia Strategy, and again in the 2012 PM Dementia Challenge, yet in 2015 whilst diagnosis rates have increased to a more ‘politically acceptable’ level, the personalised support that MUST follow that diagnosis is something many parts of the country are still trying to design, and that’s before they even progress to funding and implementation. 

 

To say this gap in post-diagnostic support angers me would be a bit of an understatement. When my dad was diagnosed, long before strategies and PM challenges, we had about as much support as many families do now. In other words, nothing. The only advantage families have now, as far as I can see, is that with improved awareness of dementia has come a wealth of online and paper-format resources, more helplines, and the hope that with increased political focus will come the action that is so badly needed. 

 

If I could find one chink of light at the end of the tunnel, and it’s stretching a point a very long way, it’s that dementia has come out of the shadows. That, however, is pretty scant consolation for families affected by dementia who feel isolated and unsupported, and whose loved ones living with dementia could be living so much better if only they had access to expertise, advice and support.

 

Closing the gap between diagnosis and post-diagnostic support must happen, and it must happen quickly.

 

Until next time...

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