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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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

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Part 1) When a label isn’t enough

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


Supporting someone throughout their dementia journey is vital

Early diagnosis of dementia is becoming a hot topic in the UK, with a multitude of different approaches including a campaign to increase the numbers of people seeking help, and proposals to screen (case find) everyone over 75 for the disease when they attend their GP's surgery. As opinions become more entrenched, the medical profession appears divided on the merits of how to diagnose and when to do it. Meanwhile politicians, desperate to improve statistics, seem hell bent on labelling as many people as possible, with little thought, or investment, into the consequences of such a move.

I have written previously about my father’s path to diagnosis (Having that conversation / Don’t wait for a 'crisis point' ), how it took ten years from when his symptoms first appeared to when we had his official diagnosis, and how that diagnosis only came as a result of a ‘crisis point’. I have openly admitted that I wish he had been diagnosed earlier, and I stand by that, but there is so much more to the issue of diagnosis than that statement alone.

When considering my father’s case, bear in mind that he was under the regular care of his GP throughout most of those ten years, that social services also became involved (and remember that back then we were living in the halcyon days before the cutbacks that many adult social care services are suffering now), and that he was visited, at home, by a Consultant Psychiatrist specialising in old age mental health, who we later discovered diagnosed dad’s dementia during that consultation but did nothing.

All the checks and balances were in place that should have ensured that a vulnerable older man wasn’t simply abandoned by the system, and yet he was, and so were we. My wish that dad had been diagnosed earlier is based entirely around the fact that I would have wanted him, and us as his family, to have had support, guidance and access to mechanisms that would have supported his memory and lifestyle and enabled him to live in his own home for longer. Ultimately, I would also have given anything to avoid the ‘crisis point’ that eventually brought about his formal diagnosis, purely because he never fully recovered from that incident.

That ‘crisis point’ could only have been avoided, however, through greater support, not simply by telling him months or years earlier that he had dementia as a standalone factual statement. There was certainly plenty of opportunities to tell him - he had numerous appointments with healthcare professionals during those ten years, that he always attended alone (out of choice). Did they tell him what we later found out that they had always believed, namely that he had vascular dementia? It is possible that they did, but he never told us, or maybe he simply didn’t understand the information or forgot? Sadly dad was not able to tell us then, and never will now.

As it was, my father never had any help from health or social care prior to when we were told of his diagnosis, and after that point we had to fight for everything for him. Maybe his case had already been included in those government diagnosis figures long before we ever knew that he had vascular dementia – if it was, it certainly never helped him avoid his ‘crisis point’ that could have killed him. Of course you could argue about medical confidentially, and that families have no automatic right to information, which of course is true. However, unlike many diseases and conditions that a patient can manage well themselves, dementia  requires a multi-faceted support system to enable the person to find relief from their symptoms, slow down their decline and remain as independent, and safe, as possible for the maximum amount of time.

You cannot simply diagnose someone, give them a few pills and send them on their way. It doesn’t work like that. There is money to be made for pharmaceutical companies if we take that approach, but there is limited, often short-lived and in many cases non-existent benefits for patients. The real help that is needed doesn’t come out of a bottle. There is no huge profit margin to be made out of it. Indeed, helping people to live well with dementia requires community support teams and projects that COST money. Potentially a lot of money if we are going to approach the ‘dementia challenge’ with a real desire to make a difference.

So, is early diagnosis still a positive step? Firstly, I believe that anyone seeking help from their GP because they or their family are concerned about dementia symptoms must of course be given answers – either from their GP or through referral to a memory clinic or other professionals. Should a dementia diagnosis result from that, then they MUST have access to full care and support, advice on lifestyle and therapies to help ease their symptoms and maintain their chosen way of life, and the opportunity to put their affairs in order and plan for their future whilst they are at their most optimum level of ability.

At every stage of this process, the person may want to be supported by those closest to them - family or friends who share a desire to support their loved one on their dementia journey. Those people in turn also need support from the health and social care systems to enable them to help their loved one, so that everyone in the equation can live as well as they possibly can with dementia in what you might call a team effort.

When diagnosing dementia there are key factors that are incredibly important. Firstly, are the diagnostic tools accurate and do they work for every person within our multicultural society, where the population is of many backgrounds and languages? Have other health conditions or side-effects from medication, that can cause similar symptoms to dementia, been accurately ruled out?

I would also look at:

·        The environment used for testing (does it put the patient at ease?)

·        The stress testing could cause to an individual that may obscure the result (you could potentially create ‘exam’ style stress for a patient who is prone to this)

·        The relationship between the person performing the tests and the patient (is this happy and relaxed?)

·        Does the patient have someone with them for support to make them feel more at ease (so that they don’t feel that they are being judged or labelled)?

·        Are you asking someone to perform certain tasks (like mathematical, spelling or historical exercises) that they have always found difficult? After all everyone has their own strengths and weaknesses.

The conclusions that this testing process comes to may indicate dementia. It could also indicate mild cognitive impairment, a condition that may never lead to dementia and yet may be very frightening for a patient. Clear advice and understanding is needed to differentiate between different conditions if patients are to fully appreciate the situation that they are in and their prognosis. At present, many people still struggle to understand what dementia is, and the disease remains shrouded in stigma, so introducing other conditions to already confused minds could be even more baffling and lead to inaccurate conclusions being drawn and incorrect assumptions being made.

Please read: Part 2) When a label isn't enough

Until next time...

You can follow me on Twitter: @bethyb1886

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The ageing mind

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

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

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

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

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

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

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

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

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

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

Until next time...

You can follow me on Twitter: @bethyb1886

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