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

LIKE D4Dementia on Facebook

 

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

LIKE D4Dementia on Facebook  

 

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

LIKE D4Dementia on Facebook 

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

LIKE D4Dementia on Facebook 

The voices of experience

From left to right: Ming Ho, Sally-Ann Marciano, Professor Alistair Burns and Beth Britton (author, D4Dementia)

I recently attended a high-profile meeting in London to discuss the ‘Timely Diagnosis of Dementia’. The attendees came from a wide variety of health and social care backgrounds, from those currently practicing medicine in various different settings, to academics and experts. The interests of business and the charity sector were also represented making it, effectively, a collection of the great and the good of professionals involved in dementia care.

Amongst the audience were a handful of people with personal experience of dementia, myself included, who spoke briefly, while two people gave presentations about how dementia had affected their life and their family. One was a man currently living with dementia, the other was a lady who had cared for her mother with dementia. At the end of the proceedings, one of the key organisers of the meeting expressed his view that out of everything he had heard that day, the stories of those with personal experience of dementia had been the most revealing and left the greatest impression.

For me, those comments summed up how I believe health and social care, particularly but not exclusively in relation to dementia, must evolve. I wrote many months ago about the need to put people with dementia and their carers at the heart of all policy and decision making, and I wholeheartedly stand by that. Far more robust, workable, positive and cost-effective policy can be made if only the people who are, or have, lived through dementia take the lead.

My personal words to the meeting briefly recounted my father’s experiences, and those of us as his family, not just in relation to his diagnosis but throughout his life with dementia. I also made three direct pleas:

1)      For professionals to listen to people living with dementia and carers past and present.

2)      For policy-makers and implementers to formulate a holistic approach to dementia care.

3)      For professionals from whatever background to leave issues relating to partisan interests in their particular area of health or social care to one side, and put themselves into the shoes of someone who is living with dementia and their family/carer(s).

More progress is needed to improve dementia care, but in my opinion so much of that is being hampered by personal ambition and tunnel vision. Many professionals, however well meaning, can easily become very focused on how policy can personally affect their working life, without seeing the wider picture. Equally, others who have already opened their minds to the possibility of learning from the people that they see as patients or clients, have proved that it can be done and work so this is not an unachievable aim.

The picture with dementia is a vast one – not restricted solely to diagnosis or any other single element. During the group discussion on my table, a huge amount of focus was given to apportioning blame, passing the buck, and accusing colleagues from other areas of the health or social care system of failing people with dementia and their carers. In my view, all of this is vastly unhelpful in achieving an outcome that benefits the people who need support the most and yet often don’t have a say in the policies that affect them.

The three words I settled on to sum up my view were simply ‘Holistic approach needed’. A holistic approach to dementia from everyone involved in healthcare, be that in primary care, secondary care, academia, research or within the wider community - meaning in practice that everyone constructively works together. A holistic approach that joins up health and social care, so that people with dementia and their families have real and lasting support. A holistic approach that considers each individual with dementia, and every need that they have, not just in relation to their dementia but in relation to every other aspect of their life, including other medical conditions. And a holistic approach that considers the family, friends and network of someone with dementia, and how they are affected by having a loved one living with the disease.

Needless to say, my three words were not adopted by my group. Yet when I spoke openly to the room later on, they received support from other colleagues – a positive sign for the future I hope. In my view something has to give, not just regarding the diagnosis of dementia which is obviously a key issue in dementia care at the moment, but also in relation to the many and reoccurring problems that come from living with dementia. The lack of support, information and understanding. The need to defeat stigma. The need to listen to carers and respond in a timely, co-ordinated and helpful way. The need to remove financial barriers to accessing the care and therapies that enable people to live well with dementia. And last, but by no means least, the need to provide the sort of outstanding end-of-life care that everyone with dementia deserves.

I want to make a huge difference through my work, and I will continue to tirelessly represent the people who are walking, or have walked, the path that I once walked with my father. In my view our contribution is what will transform the dementia landscape in the UK and further afield, improving it for professionals and families alike. There is, and will never be, a substitute for the voices of experience.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Part 2) When a label isn't enough

***This is a two part blog post***

Please read: Part 1) When a label isn't enough

Supporting someone throughout their dementia journey is vital

Regardless of how much the government needs clear statistics of exactly how many people have dementia in the UK, presumably so that they can plan and fund services accordingly (we hope!), this must not come at the expense of the individual. Which is why, whilst I am pro early-diagnosis for those who seek it, I am completely against screening (or case finding) the population for dementia under the current proposals for doing this.

The plan that is currently in the public domain is for GP’s to assess all patients over 75 for dementia within their routine appointments. This means that you could turn up to see your GP with a problematic ingrowing toenail and then be asked questions about your memory. Moreover, since this is not an official screening programme, unlike for example the tests ladies are invited to attend for breast and cervical cancer, the patient will not have the opportunity to plan to take a family member or trusted friend to the appointment with them to provide support.

This covert tactic of screening (case finding) the population is both fundamentally wrong and goes against the principles of patient choice. It also undermines the patient’s relationship with their doctor, potentially destroying trust, and could lead to patients avoiding seeing their GP for health problems that could require urgent care or issues, like for example with vascular health, that could in the end lead to dementia if untreated. The only option left open to patients who need to see their doctor but do not wish to answer questions about their memory will be to refuse to comment (which still ticks the box that requires the investigation to have been attempted).

Within hospital settings, doctors are already required to assess all patients over 75 who have been in hospital more than 72 hours to see if they have dementia. Doctors are meant to use their discretion as to the ability of the patient to undergo such questioning if they are still very poorly, but with the NHS chronically overstretched, again this is likely to turn into another box-ticking exercise.

At this point, I should stress that in both primary care and acute medicine, it is of course possible that dementia may be contributing to the condition that the person has presented with, and therefore investigations for dementia in those cases would be necessary to treat the person holistically and are entirely appropriate and justifiable. However, random assessments based on age, without informed consent or the chance to have someone close to you present, are in my view unethical.

Screening is also not supported by the current guidance from the National Screening Service – their view is that an accurate method for screening the population for Alzheimer’s disease (just one form of dementia – imagine the complexity of screening for the many different dementias) doesn’t currently exist. If they are right, these covert plans could lead to many false positive results, a huge amount of unnecessary anguish and drugs being taken that shouldn’t be, as well as potentially life-changing decisions being made as a result of entirely inaccurate assessments.

I am also concerned that focusing on diagnosis in this very mandatory way, based largely on someone’s age, brings up other issues. It helps to re-enforce the viewpoint within the health and social care systems and the wider population that dementia is a condition of old-age, which it certainly isn’t exclusively at all. By doing this it means that potentially people with early-onset dementia (dementia in someone under 65) could be ignored because their age demographic doesn’t fit the ‘considered norm’.

I also personally feel it is very disrespectful to our older generation to subject them to this type of widespread scrutiny, or case finding as it is otherwise known, that I suspect may well be very unwelcome – indeed has anyone even asked this huge swathe of the population if they agree with this proposal? Dementia is a stigmatised condition and many people, especially older people, have very negative viewpoints about it and huge fears about developing it. Like most of us, they will increasingly know of someone with dementia, and may have heard extremely negative stories about their care and support. The last thing they want is to feel as though they are being herded like sheep into a particular pen. The health service really must grasp the concept that everyone is an individual and act upon that in every aspect of healthcare, rather than having one-size fits all tick-box exercises for everything.

Creating awareness, busting myths, tackling stigma, improving the breadth of specialist dementia services, removing the postcode lottery around accessing services, sorting out adult social care funding so that the system is fair and equitable, providing carers with the support that they need, and investing in therapies that make a tangible difference to people’s symptoms and improves their quality of life will naturally help to change perceptions of dementia, and encourage members of the public to come forward of their own accord to ask for help if they, or their family, feel it is needed.

At present, many people who are already diagnosed, and their carers, receive little or no help with understanding dementia, day-to-day living, or planning for the future. Placing potentially thousands more people into that vacuous trap is not helpful to anyone other than those who want to gather statistics. You may argue that accurate statistics are needed to plan services, but we do currently have a number for people diagnosed with dementia and we have so far done nothing to plan or implement services that support all of them, or from what I hear, even a majority of them.

So why are dementia diagnosis rates so patchy around the country? I don’t believe that this is as a result of there being a widespread ‘no cure so no point getting/giving a diagnosis’ culture. I suggest this correlates with the levels of awareness and support in those areas. If local health and social care services are run by sympathetic people with extensive training or professional interest in dementia, of course people with dementia who come into contact with those services are more likely to be diagnosed quicker and receive better care, reassurance and advice.

Equally, if local dementia activists have done a wonderful job of raising awareness, and numerous thriving community services exist and are well supported by local businesses and media, the ‘dementia message’ will seep into many more homes and dementia will not scare people in that community in the way that it might in others. If people hear about the good care and support that their friends, colleagues and neighbours have had when they first noticed dementia symptoms, they are more likely to seek help themselves if they develop problems.

In the end, like most things in health and social care, dementia diagnosis rates come down to your postcode. Perhaps the irony of these massive differences in the diagnosis rates between different health authorities only further highlights the need for ‘dementia friendly communities’ across the UK. If these truly existed within every community, dementia diagnosis rates would undoubtedly rise because people would feel comfortable talking about, and living with, dementia. Likewise, if we had effective, long-running  countrywide public awareness campaigns, like those mounted for certain types of cancer, again people would think, assess, understand and be more willing to come forward.

There are no quick fixes to turning the UK into a country where people with dementia are not stigmatised, where they and their carers are fully supported, where a diagnosis isn’t simply a useless label, and where communities are truly dementia friendly. This ill-thought-out screening/case finding plan is not the answer. Early diagnosis must involve patient choice and, crucially, post-diagnosis support. Built into that there must be involvement and support for those closest to the person with dementia, if the person wants that, at every stage of the dementia journey, from diagnosis to end-of-life, in order to make each individual dementia journey the best it can possibly be.

Bring all these factors together, and dementia diagnosis, care and support would be revolutionised in the most person-focused, carer-focused environment imaginable. The question is, can the UK rise to the challenge?

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook



Good to talk?

Having had 19 years of first-hand experience with dementia, I always find it very interesting listening to other people talking about it. By far the most powerful accounts are, for me, those that come from people who are living with dementia, those who are looking after them, and carers whose dementia journey with their loved one has come to an end.

Perhaps that is because of my background and close personal involvement in caring for my father, or maybe it is because there isn’t a theory, concept, project, service, product or sound bite that sums up dementia, explains it, makes it real and shows us a way forward like listening to people who actually know what living with dementia REALLY means. Tales of day-to-day struggles coupled with humour, honesty and warmth are, in my opinion, the greatest education tool for anyone working in dementia care who lacks their own personal family experience of this disease.

I will never look at dementia from a ‘professionals’ point of view. I am not medically qualified, I am not an academic, and incidentally I am not seeking to become either (probably a little too long in the tooth now anyway!). In that regard I suspect that I was in the minority at the 7th UK Dementia Congress, but then again I was also in the advantageous position of listening to people who are living with dementia talk and seeing so much of my dad in them from his earlier years with this disease.

Back then no one really spoke about dementia – now everyone is talking about it. The awareness is fantastic but I do not want dementia to just be another trendy bandwagon to jump on, or for real progress in care to be drowned in jargon, with business people trying to out-do each other for the latest, greatest idea. If there is one piece of advice I have for anyone in dementia care, it is that in my experiences with my father and many others the best aspects of good care are also the simplest.

That does not mean, however, that we cannot embrace new ideas. For me, two of the most enjoyable presentations I saw were from professionals who had come from overseas to explain how they are enhancing the lives of people with dementia. Randy Lee Griffin from the United States spoke about a program to bring the joy of birds, bird-watching and nature to people with dementia – a brilliant idea that reminded me of my father’s love of the great outdoors, how much he enjoyed watching and hearing birds whilst outside, the CD of birdsong that he had in his room, and a life-like soft toy cockerel that his hands spent many hours examining.

Yolanda Brand from South Africa detailed how her care home have enabled residents to keep in touch with their loved ones via social networking – a fantastic idea, not designed to in any way replace visiting or personal interaction, but to enhance communication when families are far away. To me it spoke volumes about the importance of families in dementia care, something that I feel needs to be emphasised far more than it is. It is vital to not only acknowledge and support those who are caring for a loved one with dementia and the many family members who are touched by this disease, but to tap into the unique knowledge base that they offer to professionals and policy makers (something that I wrote about in this post on good dementia policy).

For anyone reading this wondering if all the talking really changes anything, I would say that no matter how good talking is, action is what really matters. Many people are striving to do excellent work and my many colleagues within Dementia Challengers (#dementiachallengers) are testimony to that, but my thoughts during the Congress were predominantly focused on the people who were not there. Those whose dementia meant that they could not attend, those who were caring for someone with dementia whilst we were all talking and listening, those who were hearing a dementia diagnosis from their doctor, and those who were mourning the passing of a loved one as their dementia journey ended. They are and should always be the focus of everything anyone does in dementia care.

Should you need inspiration to keep that focus, I hope my last tale from the Congress will provide it. I was in the reception hall having just arrived when I met, via the person I had travelled with, one of the speakers that day. Introduced to me as Trevor, he greeted me warmly, shook my hand and kissed me on both cheeks. We exchanged a few words and then he left. When I met him I thought he was one of the many professional speakers at the event. I only discovered later, as he took to the main stage, that he was living with dementia.  A moment to reflect, perhaps, on who the real experts are.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook