Care and support in the post-Brexit landscape

Mostly I love social media and its ability to give 'real time' reaction to news and events, but I have to say that I didn't enjoy the negativity I saw this morning following the decision of the majority of the UK electorate to vote to leave the European Union.

Some of the language I have seen has reminded me of the worst of that which is associated with dementia - war-like rhetoric, stigma and a lack of respect. Whatever you believe about EU membership and however you voted, in my view this is a time for solidarity within our communities and positivity about what happens next. My only EU Referendum retweet was to share the reaction of Brendan Cox, the widower of Jo Cox MP, who tweeted this:

Today Jo wld have remained optimistic & focussed on what she cld do to bring our country back together around our best values #MoreInCommon

— Brendan Cox (@MrBrendanCox) June 24, 2016

'Optimistic and focused' sums up my mind-set entirely. Indeed, ever since I began campaigning on issues of health, social care, dementia and ageing I have lived by those sentiments (and others that are equally positive). Despite having some very negative experiences in my dad's years of living with dementia, I have chosen to work constructively to make improvements rather than constantly beat a drum of criticism and negativity.

Now, more than ever, I feel that as people who care passionately about health and wellbeing we need to follow that mind-set and address the following:

Avoid turning the outcome of this vote into an ageist agenda

Dissecting a democratic vote into age group demographics is very divisive in my opinion. Whilst statistics suggest more older people voted to leave the EU than younger people, that doesn't make either opinion more or less valid, they are simply different viewpoints. Many older people I’ve met didn’t feel that what we have is what they voted for back in 1975 and this referendum represented a chance to change the direction the UK has taken – effectively undoing a ‘wrong’ in their eyes. It is fair comment, even if you don’t agree with those individuals.

Whilst younger people may be more impacted long-term, the message has to be one of optimism and focusing on what can be created, changed and achieved, not what can't. As a new mum (of 7 months!), that is the message I will be telling our daughter when she is old enough. There is nothing you can't achieve, and that remains as much an inspiring message now as it was last week. The health and social care sectors need to promote this to young people who are considering their career options in this changing political world – they can be our person-centred, creative, energised leaders of the future.

Celebrate our current overseas workforce, support and value them, and welcome other talented individuals in the future

So much of the referendum campaign focused on immigration, which is a hot topic in UK health and social care given the reliance these sectors has had on recruiting talented, hardworking people from overseas. That reliance won’t change, so the message I would like to give our politicians as they shape the country in the aftermath of this referendum result is: 

• Every overseas worker, no matter what country they are from, who is currently here and doing vital work in health and social care must be able to continue to do that if they want to and without any barriers.
• Recruitment drives that take place overseas to fill vacancies for health and social care professionals will still be needed, and these roles need to be considered exceptional professions so that employers can make that recruitment process as seamless as possible. The only proviso is the need to be able to speak, read and write English to a high standard, which is purely a common-sense measure to ensure seamless communication and understanding in the many challenging situations people who work in health and social care face.

It is often said that overseas workers will do the work that the British-born population won't, and in both my dad's time in care homes (punctuated by spells in hospital) and through the work I do now, I have seen this consistently over many years. What I would add, however, is that as many non-EU workers cared for my father as EU workers did, so it's important to stress the diversity in the workforce that we have now as an indication of what we will need long-term.

Keep dementia care and support on the domestic (and international) agenda

With the Prime Minister resigning, there needs to be a renewed commitment from whoever takes his place to ensure that the work that has been done around dementia, notably under the auspices of 'The Prime Minister's Challenge on Dementia', continues. The first dementia strategy was launched under the last Labour government (in 2009), and whatever the future holds for the current government and the different political parties, the need for the UK to deliver the best dementia care and support in the world will not change. Likewise, the need to co-operate  and collaborate on dementia research must continue, not just with European countries but worldwide.

Going forward...

 

I would urge NHS and social care leaders to galvanise their lists of needs and wants, rather than gnash teeth and delve into the language of disaster. Vulnerable people who are in our hospitals, care homes, and within our communities who need our services, our care and our support don't stop needing that now this vote has taken place.

Now is a time to set the agenda, lead, campaign, create, change and evolve... and dare I even say unite? Should integration of health and social care be realised through the outcome of this referendum result, that, for me, would be the greatest surprise of all, but who knows? 

With an uncertain future only one thing is guaranteed - each one of us has the chance to shape that which isn't yet decided.

 

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...

You can follow me on Twitter: @bethyb1886

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Focus on carers

Today sees the start of the annual Carers Week, an important campaign to help raise the profile and needs of carers in the UK and celebrate the vital contribution they make to society. This year's theme is 'Carer Friendly Communities', which dovetails neatly with the long-standing ambition to create 'Dementia Friendly Communities'.

The idea of 'friendliness' it seems is everywhere, and carers are certainly long overdue their dose of understanding, support and recognition. However, the ambition to create ‘Carer Friendly Communities’ isn't going to be one that is easily achieved. Carers face a multitude of issues and problems, which (in no particular order), include: 

•   The low level of Carer's Allowance, and fears that it could face cuts in the future (rather than being increased). Many carers are already on the breadline or in debt.

•   Prejudice in the workplace. Many employees who are also carers can find it impossible to juggle employment and their caring role, and unlike the awareness of issues parents of young children face, the issues carers face when caring for adult loved ones are often poorly understood by employers.

•   Lack of training. While training for our health and social care workforce may be patchy, education and training are often completely non-existent for carers of loved ones. It’s a role you often ‘fall into’ and have to learn as you go, despite some of the demanding and complex tasks many carers undertake that, in the professional workforce, it would be unthinkable not to provide training for.

•   The complexity of navigating health and social care systems. This complexity can be so great that professionals in health and social care who then become unpaid carers for family members or friends often report huge difficulties with navigating the systems they work in. Against that backdrop, what hope is there for the majority of carers facing these circumstances?

I’m sure even the most ardent supporter of ‘Carer Friendly Communities’ would agree that it will be impossible for communities alone to provide solutions to these issues, but that shouldn’t detract from the laudable aims of ‘Carer Friendly Communities’, not least because I believe that collective local action can improve the lives of many people in our society, including carers.

 

Potentially living in a community that understands the needs of carers could help with:

•   Support for carers. This could be anything from social interaction with likeminded people to help with having a break or a holiday (often carers want a holiday to be facilitated that can include their loved one).

•   Greater understanding of the needs of carers and the people they care for. This could be anything from making transport more accessible to providing toilets that a carer and the person they are caring for can go into together in order to change an incontinence pad.

•   A more enlightened attitude. As I explained in my G8 Dementia Summit Film, we would take my dad to coffee shops and people would often stare because we had to spoon drinks into his mouth. Educating communities about different conditions, and the ways in which families are supporting people living with those conditions, can help to remove a lot of stigma and discomfort families who are caring for a loved one with conditions like dementia feel when they go out. If we don't address these issues they can, and do, lead to unbearable levels of social isolation.

•   Support for life after caring. This is a vitally important area of carer support that is largely ignored. If a person goes from being a carer for many years to no longer fulfilling that carer role, for whatever reason, that is a life-changing juncture for that individual. If the person they have cared for has died, there is also a need for specialised bereavement counselling that takes into account not just the personal relationship the two people had but the care and support relationship too.

My reservation is always around how the extra support carers need is going to be funded. We know that social care is on its knees, and although there is a huge amount of potential to turn care homes into community hubs (this could help with some of those socialising and training issues), or to utilise and develop some of the fantastic potential within the charitable and community interest sector, initiatives - however well-meaning - cannot survive on fresh air alone.

My personal view is that as a country we don't value carers enough. Time and time again the huge contribution they make to society and the immeasurable problems that would be created if every carer suddenly decided to stop caring are conveniently forgotten. We must NEVER overlook the fact that without families, friends and neighbours caring for the people they love and are close to, our health and social care systems would completely collapse. Carers prop up so many services, helping to keep loved ones out of hospital and out of care homes, but many do this as isolated, bewildered, exhausted and marginalised individuals who often fell into caring and see no ‘way out’.

In reality, most carers actually don’t want a 'way out', but they are driven to despair and hopelessness by the lack of support. It is a lack of support that shames us all. Greater support for carers would be amongst the finest investments we could ever make to our country for today, tomorrow and the future. If ‘Carer Friendly Communities’ proves to be one way to facilitate that then great, but I would also urge our politicians and policy makers to do their bit, because without their input and influence this focus on carers will just be another well-meaning exercise with no tangible inroads being made into the issues that trouble carers the most.

Until next time...

You can follow me on Twitter: @bethyb1886

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Taking stock

Last weekend marked the 3^rd anniversary of my dad’s death. Alongside remembering that immensely sad day, it also prompted a lot of reflection, both personally about dad’s life and the gap he has left behind, but also more generally about how much has, or hasn’t, changed in those three years for people who are living with dementia, their families and the professionals charged with providing care and support.

My dad died just a month after David Cameron had launched the first ever ‘Prime Minister’s Challenge on Dementia’. It some ways it seemed very ironic – the country was finally waking up to dementia as dad was going to sleep for the last time. There was nothing in that Challenge that could possibly benefit dad, but I could see that it provided a focus that was badly needed for people who were newly diagnosed or who would go on to develop dementia in the future.

Since then there has been an increase in the diagnosis rate, an improvement in UK-wide awareness resulting in 1 million Dementia Friends, the creation of some ‘dementia friendly communities’, more dementia training for health and care staff, a renewed research effort, and an unprecedented global focus on dementia.

All that sounds very impressive, and undoubtedly it is an improvement on where we were 3 years ago, but I remain frustrated. Maybe I’m impatient, I know Rome wasn’t built in a day, and obviously care and support for people with dementia cannot be transformed overnight, but I remain unconvinced that everything that’s been done, great though it is, has really benefited people with dementia to the extent that the majority could say they are living well, or at least living better.

A major contributing factor to this situation are the cuts in social care, something I recently wrote about for Huffington Post. Most people who develop dementia have far more need for social care services than health services over the course of their dementia. Yes healthcare is important when diagnosing dementia, providing effective management of any long-term conditions that the person might have alongside their dementia (for example diabetes or high blood pressure), treating the common infections that people with dementia often develop as dementia progresses (urinary tract infections and pneumonias), and caring for people if they have a fall that requires hospital admission, but healthcare isn’t the bread and butter of dementia care.

Keeping people safe and well in their own homes for longer is the widely-agreed gold standard for dementia care. It’s what most people with dementia want and, frankly, are entitled to. It will always live in my memory that my dad was taken to hospital having collapsed from a larger stroke and never returned to his home. Not through his choice, or ours, but because he was deemed to have been too much of a risk to himself and others if he returned home. In hindsight, that could easily have been code for, “We don’t have any suitable accommodation that could help to keep him independent, nor can we provide the professional support he needs or support you as his family, therefore it’s just easier to keep him in hospital and then put him in a care home.”

In the 3 years since my dad died, or indeed the 12 years since he was moved into his first care home, I’m not convinced that any policy by any government of any political persuasion has actually ensured that if we lived that experience with my dad again now that the outcome would be any different. Daily life for people with dementia still, pretty much, amounts to muddling along in your own home (if you're 'allowed' to) - with some modifications if you’re fortunate enough to be helped with those, or indeed can afford them yourself – and being means tested for home care which might, in reality, amount to highly inadequate 15 minute visits that neither you as the person with dementia, or the care worker, actually feel achieve anything. The alternative is either hospital (free care) or a care home (means tested).

We know that people with dementia are ending up in our overcrowded A&E departments far too often, mostly because they haven’t been getting the social care that they need, and then proceeding to languish in hospital beds for far longer than they should be (much like my dad did, with one 3-month spell in hospital seeing him lose half his body weight as he was drugged with antipsychotics) all because of endless assessments and wrangles over funding.

We also know that GP’s are under pressure to diagnose increasing numbers of people with dementia, often referring them into memory clinics with long waiting lists. There is precious little support for people who are newly diagnosed, with too few specialist dementia nurses and then, of course, there are families, many of whom want to support their loved ones but are given scant help with this and a paltry carers allowance to live on.

Meanwhile, I’m not convinced the Care Act, that great bastion of apparent overhaul in caring for and supporting people, will provide much tangible assistance. Yes, there are entitlements to assessments, Councils have to help families by providing information, and next year sees the cap on care costs come into force, but for many families this means-tested social care system will still leave them with complex financial issues to overcome.

Add all this up and it amounts to a not particularly impressive stock take. I still don’t think most people with dementia feel listened to, nor do their families. A lot of what’s been achieved, it could be argued, is fancy window dressing – things that look good and are relatively easy to succeed with, whilst side-lining the really big issues about how we provide holistic, person-centred support for each individual living with dementia, preserve their independence for the longest possible time, give carers and families the help they require to continue to care and not breakdown, and properly provide and fund the social care people with dementia need.

I hope that dementia remains a priority for the next government, but even more than that, I hope politicians start to get to grips with the issues that are REALLY challenging for people with dementia and their families.

Until next time...

You can follow me on Twitter: @bethyb1886

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£55 to diagnose dementia

When the headlines first broke that GP's in England are to be paid £55 to diagnose dementia, I have to admit I wasn't surprised. Improving diagnosis rates has been the number one target since the 2009 National Dementia Strategy, and it came under the microscope again in the 2012 Prime Minister’s Challenge on Dementia. Yet, despite making diagnosis the cornerstone of English dementia policy, diagnosis rates haven't improved to the desired level.

In policy terms it's a small step to start offering financial incentives to diagnose, but in human terms it is a massive leap. It puts a value upon a diagnosis of dementia that simply doesn't exist if the clinician diagnoses another condition. It tarnishes good sound clinical judgement with the promise of payment, and it poses significant ethical and moral dilemmas.

Granted it's not a huge payment, it is made to the practice rather than the individual GP, it's optional not mandatory, and it is a relatively short-term scheme that will only last 6 months. Just think about the last part of that sentence though: why is a dementia diagnosis more valuable in the next six months than at any time before or after that? Could it be something to do with targets?

This is where we get into really tricky waters, because you and I and anyone visiting their GP doesn't see themselves as a target - just a citizen needing the help and advice of their doctor. The doctor/patient relationship is one bound by trust, and like any relationship, if the trust is lost then a breakdown of that relationship becomes inevitable.

Such a breakdown could have many significant and long-lasting consequences, not least that a person may seek to avoid seeing their GP, or any healthcare professional, about other problems that could have serious, possibly even fatal consequences in the future. Every patient needs to be able to trust in their doctor to reach a judgement about their symptoms based on the best available evidence, having availed themselves of all necessary diagnostic tools and tests, and in a holistic way that puts the patient at the centre of a multidisciplinary team. 

Even if a GP does all of that, we know that diagnosing dementia isn't an exact art. There are numerous different types of dementia, each one presenting itself differently, and diagnostic procedures (although greatly advanced) are not completely accurate. There are also other conditions, such as depression and delirium that can look remarkably similar to dementia.

Assuming an accurate diagnosis can be made, for many people there is little, if any, post-diagnostic support. You may be offered some medication, but dementia drugs aren't suitable for a lot of people (they weren’t suitable for my dad), although it is perhaps very suitable for the manufacturers of these medications that prescribers are going to be paid to diagnose more potential candidates for them.

Of course incentivising GP's to offer particular services isn't new, and the argument behind this payment is that it will enable practices to pay for the extra time and work involved in making a diagnosis. But I know that if I went to my GP and I was diagnosed with something that I'd seen headlines telling me they were being paid to diagnose me with, I would be unlikely to trust that diagnosis or that GP.

The money set aside for this payment scheme is £5m, which although it may sound a lot, in terms of overall health service spending it is relatively low. Sadly it doesn't allow me much creativity to think about how I'd like to spend it if I was the person making the decisions about dementia policy, but with due artistic licence, I’d like to suggest the following:  

• Invest in training that enables doctors to do what their profession is meant to do - use sound clinical judgement to make a diagnosis (and be just as confident about not diagnosing something because you aren't being beaten over the head to steer your diagnosis in a particular direction). The quality of each individual diagnosis should always be more important than the quantity of diagnoses being made. 
• Invest in post-diagnostic support. Models of positive support, that genuinely enable people to live well, are vital to tell the public that you can expect to live a good life after a diagnosis. Forget the promised land of cures or life-changing treatments for a moment, if you can't even offer your patient hope that they can live a life that supports them in the ways that they want to be supported then as a country we are failing big time. Good quality support doesn't make headlines - it isn't a major breakthrough in a lab or an eye-catching policy. It is most likely to involve human interaction and specialised social care – the latter of which is expensive in terms of well trained professional personnel, hence why it isn’t invested in.

So instead we focus on diagnosis. The quicker and easier it can be done the happier everyone will be, or will they? I would be the first to argue that anyone who is having troubling symptoms and seeks help should be given every available method of help to accurately uncover what is causing their symptoms. But is a higher diagnosis rate really a mark of a compassionate, supportive society that sets the benchmark for the world in how to care for people with dementia?

 

I'm not convinced it is. For me the benchmark is in how well each person currently diagnosed with dementia is living, and the confidence anyone with troubling symptoms has about coming forward to find out what is causing their symptoms. I would suggest that adding a financial reward into that diagnostic process will only make the undiagnosed person more sceptical, less likely to come forward and, should they really have dementia, less likely to accept that diagnosis, leading to them potentially experiencing other mental health problems.

 

I would also suggest that it lays vulnerable older people, especially people in care homes, open to being labelled without a robust diagnostic process, mostly because they could be seen as an easy target, particularly if they don't have a family to advocate for them. Making a diagnosis of any condition is about integrity, and above all else, putting the person first.

Because after all we are people, not targets.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Falling through the statistical net

Statistics drive health and social care policy. If a condition, disease, treatment or care option doesn’t have a fairly alarming statistic attached to it, it is likely to be ignored. 

Interestingly, however, I’ve only really learnt this since I began doing the work I do now as a Campaigner, Consultant, Writer and Blogger. In any year out of the 19 that my dad lived with dementia, I couldn’t have told you the latest statistic on the total number of people in the UK who were living with dementia. The best stat I could have given you in the 8+ years that my dad lived in one of his nursing homes is that the home could accommodate 60 people, all of whom were living with a type of dementia.

Admittedly my dad may well have been identified on GP registers as having dementia (everyone with dementia should be coded as such on GP systems, but of course in practice this is often either not done or is done inaccurately). Also, as someone receiving social care he may well have been part of a statistic related to numbers of older adults in care homes. In both instances, however, I can’t say with certainty as relatives aren’t involved in these processes.

What I can testify is that when you are caring for a loved one with dementia, life feels considerably more compact than the vastness associated with national statistics. It’s pretty much just you, your loved one, and any wider network of family and friends that you may have. If your loved one is attending a support service or living in residential care you’ll be meeting a few other local people in a similar position to you, but that is pretty much as big as the picture gets for most people.

Since my dad passed away, plenty of statistics have be published, revised and republished. We now have the Dementia Map for members of the public that reports figures on care, support and research across England, the Dementia Prevalence Calculator for clinicians, and with the launch of the PHE Dementia Intelligence Network, we can expect far more statistics to be produced in the future.

The latest figures published by the Alzheimer’s Society earlier this month on the prevalence of dementia tell us that: 

By the 2015 General Election 850,000 people will be living with dementia in the UK. By 2025 that number is expected to rise to 1,142,677 – more than the entire population of Birmingham, the UK’s second largest city. And by 2051, the prediction is that 2,092,945 people will be living with dementia – that’s more that the populations of Liverpool, Manchester and Birmingham combined.

225,000 people develop dementia every year, which equates to roughly one person every three minutes.

Currently, 1 in 688 people under 65 have dementia, 1 in 14 people over 65 have dementia and 1 in 6 people over 80 have dementia.

Every single one of these figures are of immense importance to the people charged with planning services, but I question how much translation really happens between the figures that get published in reports and the real-life experiences of people who are living with dementia and their families.

The problem with relying on very broad statistics is that they don’t tell the whole story. They give you a number of people, but what they don’t tell you is how to provide individualised care and support throughout each person’s years of living with dementia. In other words, they don’t tell you anywhere near enough about the lived experience.

I acknowledge that polls are conducted to inform us with more practical information. For example, in the Alzheimer’s Society report ‘Dementia 2014: Opportunity for Change’ we learnt that:

61% of people with dementia had felt depressed or anxious recently, 40% had felt lonely recently, 52% felt that they did not get enough support from the government, 34% did not feel part of their community, 28% are not able to make decisions about how they spend their time and 18% felt that they were not living well with dementia.

However, these figures came from a sample of 1,327 people, all of whom were in-touch with the Alzheimer’s Society and presumably had received some level of support. In my dad’s 19 years of living with dementia I can confirm that I was never asked to complete any national surveys – the only surveys I had were from his care providers, CQC and their predecessor organisation CSCI, to find out how satisfied we were with the care dad was receiving. 

If we as an incredibly involved, pro-active, supportive and loving family never had any personal input into gathering UK-wide dementia-related statistics during my dad’s lifetime, then I wonder how many other people who are living with dementia and their families are falling through the statistical net? It would also be worth noting that we never had any support from any dementia charities during my dad’s dementia – I wonder how true that is of other families in 2014?

Granted much has changed since my dad was alive. Improvements have been made to services and support, and awareness has grown significantly since the Prime Minister’s Dementia Challenge. If you are in-touch with modern-day dementia services then you are potentially going to have a far greater chance of living well with dementia. The point is, however, a lot of people aren’t in touch with those services.

Pretty much every person I talk to about dementia (which is a routine occurrence not just in my work time but when I’m out socialising and enjoying recreation) knows very little, or absolutely nothing, about the services and support available to them. It is so common place that I now have a growing compendium of links for distribution! This only backs up my concern that while we paw over the ‘big picture’ statistics, families all over the UK are flailing in the darkness, unsure of what a diagnosis of dementia means and how they will cope in the years ahead.

So my message to the policy makers is this: by all means gather statistics, gather as many as you feel you need, but don’t run away with the assumption that as things stand they tell you the whole story about dementia because they don’t. My dad lived with dementia for 19 years, accessed numerous services and received care that cost an untold amount of money, yet the only national statistic I ever knowingly contributed to on his behalf was the one that recorded ‘dementia’ on his death certificate (and that only happened because I insisted I wanted dementia specified). A bit late to help him live well then.

Until next time...

You can follow me on Twitter: @bethyb1886

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