Reframing the reporting about violent older people in hospitals

Recently the BBC ran a story that over 75's are responsible for 57% of physical assaults on NHS staff in hospitals. These assaults range from biting and pinching through to some of the most serious attacks that are recorded. In trying to explain why these incidents are happening, the stress and confusion that a hospital stay can cause were highlighted, and patients who are living with the effects of dementia were inevitably mentioned.

Sadly, I think many people reading the headline and acknowledging that dementia is mentioned will, yet again, assume that all people with dementia are violent. Little consideration will be given to how hospital environments contributed to the circumstances around these incidents, or indeed how the lack of comprehensive staff training or appropriate staffing numbers did likewise.

What also won't be examined is how many people were avoidably in hospital in the first place, or who had remained there for far too long when not clinically necessary because of failings in the availability, organisation or funding of social care places. It's just quick and simple to look at older people and say: "They are violent because they have dementia and are attacking the people trying to care for them."

What has to be understood is that people with all different dispositions and from all walks of life develop dementia. If you were an unpleasant person with a quick temper and a tendency to be violent prior to developing dementia, your dementia may or may not make those character traits more pronounced.

Likewise, for some people who were mild-mannered and never hurt anyone, the development of dementia can lead to symptoms such as paranoia, hallucinations, disorientation, confusion and anxiety that can result in a person lashing out without realising they are or without intending to. It is simply their reaction to what they are experiencing in that moment, allied with the circumstances (environment, staffing etc) that they are in the midst of.

Delirium and other mental health problems that either haven't been diagnosed or aren't being well treated can also contribute, not to mention the side-effects of a medication, poly-pharmacy or indeed something as simple as a urinary tract infection, being hungry or tired - do not underestimate the effect of sleep deprivation. A person may also feel angry, ashamed or undignified if they aren't being supported to wash, use the toilet or be mobile in the way they would want to be, resulting in feeling uncomfortable or becoming incontinent or immobile.

I am not in any way making excuses for violence against NHS staff, nor would I ever condone it, but before we brand older people as violent patients I think we need to understand how being a hospital patient can make you feel.

Last year I spent one night in hospital following the birth of our daughter. All the care I received was wonderful and the staff were very kind and helpful to me. But I didn't sleep a wink. Nor did I particularly like the food. I definitely wanted to lock the bathroom door when I went for a shower, and ideally would have preferred to keep the curtains around my bed closed, but because we all had to be in view of the staff so we could be monitored, that wasn't possible except for breastfeeding or getting dressed.

Granted, I had just had a baby and hormones were going wild, but fundamentally I was a knowledgeable, articulate person who could speak up for myself and wasn't in danger of having to stay in hospital any longer than was absolutely necessary. Yet I felt vulnerable. And if I can feel vulnerable, then I can only imagine how an older person, potentially with reduced communication abilities due to their health, might feel.

I have written before about how undiagnosed pain in a person with dementia can affect that person. I've also written about unmet needs being misunderstood as 'challenging behaviour' (a phrase I hate), and about the effects of illness, incontinence, hunger, dehydration and sleep problems. I've also addressed the shortcomings in hospital environments for older people in comparison to the environments we offer children.

All of these issues can easily converge and result in avoidable incidents. Aggression is so strongly linked to dementia that I meet people who are surprised if their loved one isn't aggressive. Yet there is so much that can be done through person-centred care, occupation, reablement/rehabilitative support and life-story work to support people with dementia to cope with their symptoms.

Whilst the BBC based their story on firm evidence, with figures obtained from NHS Protect (the organisation dealing with crime across the health service), I suspect that many people simply won't see beyond the statistics and examine the real issues, let alone tackle them. As a result fear of having contact with older people and people who have dementia proliferates. With such ostracisation comes isolation, and an even greater chance of people who are already feeling misunderstood reacting to that in ways that hurt them every bit as much as those trying to provide care and support for them.

Understanding about dementia has improved over the years, but it isn't where it needs to be to provide appropriate, individualised support for every person. Geriatrics isn't an area of medicine that is oversubscribed with our brightest and best professionals in the way paediatrics might be considered to be, and ageing within our society still isn't universally viewed with dignity, respect or compassion. Often older people's services are underfunded, stretched to capacity (and beyond) and seen as little more than a 'dumping ground' for people viewed as adult babies and stripped of their identity.

We are long overdue a complete re-evaluation of how we care for older people in hospital, including the need to even be in hospital to begin with, and an honest stock-take on how circumstances (many of which we can control) result in incidents that are then beyond anyone's control, least of all the patients at the centre of them. As in all areas of healthcare, prevention is always better than cure.

Until next time...

You can follow me on Twitter: @bethyb1886

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Co-production in health and social care - It really isn't rocket science

Last week was the first ever National Co-production Week, identified on twitter as #CoProWeek. Organised by the Social Care Institute for Excellence, the creation of this awareness raising week marks an important milestone in recognising that if you work in health or social care, it's actually a pretty good idea to listen to, involve and continually work with the people who are using your service(s).

Purely co-incidentally, the start of National Co-production Week also saw the launch of a report I was involved in creating with Carers Trust that looked at the 'Care Act for Carers: One Year On' (PDF). Amongst our recommendations was an explicit remit (on page 23) tasked to one of the pioneer co-production organisations, Think Local Act Personal, to involve carers (people who care, unpaid, for a friend or family member) in services:

"Think Local Act Personal should work with carers to devise and offer training and materials to support practitioners to work with carers to co-design personalised support."

We also reiterate the importance of ‘co-design’ in our 2018 ‘wish list’ (on page 25):

"Social workers and other care practitioners can show that tailored support plans are routinely co-designed and kept under review with carers."

The history of co-production

'Co-design', or 'co-production' may sound like modern day jargon (they are unpopular descriptions with many people I know), but various incarnations of the basic principles of involving people who use services, and their carers and families, in how services are designed, created and run have been around for many years.

If anything, that is my personal disappointment. Through my work I’ve met stalwarts of the 'co-production scene' who have been co-producing for an incredibly long time and yet they feel little has changed on the frontline. In my view, that lack of change isn't a reflection upon those individuals at all, but more about how our health and social care systems respond to those people and the need to challenge the status quo.

Historically, we’ve been far too keen on ‘doing things to people’ rather than truly involving people in their own care and support. We like to tell our fellow citizens how things will work and what will happen to them, being prescriptive and precise, and expecting them just to go along with it. Their own opinions have been seen as irrelevant, perhaps even dangerous, and of course 'professionals know best' anyway. In other words, citizens (patients, service users, carers and whatever other labels you want to affix to ‘Joe Blogs’) should be ‘seen and not heard’.

In June 2012, I wrote a blog entitled ‘How do you make good dementia policy?’. Much of what I talk about in that blog is about co-production, except I didn’t call it co-production then. To me it was just the simple principle of involving people, which I summed up in this quote:

"My view is that you need those with direct past and present knowledge and experience of dementia to be at the forefront of policy making, privately and publically."

Tokenistic involvement isn’t enough

I have a fundamental belief that within health and social care, there is still an arrogance amongst many leaders to even involve citizens in their work, never mind truly embracing co-production and embedding it within their organisations. Often involvement is tokenistic, piecemeal and descends into glorified talking shops, which are then evaluated poorly and deemed pointless.

Budgets to support true co-production rarely exist, or are extremely limited. Interestingly, these funding arrangements are always decided by people employed by organisations, and I do wonder if being in the safely of a salaried job stifles the desire to engage and create beyond your own job description.

That may sound harsh, but given that in 2012 I was writing about the need to involve people who use services and carers in those services, I simply haven't seen enough innovation to justify a more positive assessment. If we could get to a stage whereby the viability of health and social care services was judged by how well they engaged with the people using their services, and their carers and families, I suspect a rapid improvement would soon follow.

Current, classic examples of organisations not engaging are seen on the conference scene, where too often I still see programmes for events that don't include the voices of experience. From the knowledge I have through my work, I don't believe that enough local authorities co-produce their services with their citizens, nor do NHS trusts or social care providers, and likewise for national government.

And yet, in that 2012 blog post I made the value of lived experience crystal clear when I said:

"The greatest educators are people who have learnt from their own experiences."

Time to change

I am impatient for change, I would freely admit that, and those who are embracing the true principles of co-production don't get enough praise for their work. For everyone else, I come back to this quote from that 2012 blog post:

"If you want to know about frontline warfare, you ask a soldier. If you want to know about famine in Africa, you go to Africa and ask the people who are starving. If you want to know about dementia, ask the people living with it and carers past and present who have dedicated their lives to understanding dementia."

For dementia, read any condition, any service, any experience. There are always citizens to ask about their health and care, always something to learn from listening to them, and always a way of meaningfully and fully engaging them in how you serve them now and in the future. It really isn't rocket science.

Until next time...

You can follow me on Twitter: @bethyb1886

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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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Older carers - Isolated and forgotten

Last week was Carers Week, an annual awareness raising campaign that highlights the vital role of people who care, unpaid, for family or friends. Carers Week also aims to promote ways in which carers can be better supported, which is particularly relevant for one group of carers who I feel are amongst the most marginalised in society - older carers.

While many people dream of retirement and ageing as a golden period in their life when they can pursue the hobbies they enjoy and where their time is truly their own for, potentially, the first time in their life, the reality for an increasing number of older people (70+, 80+ and beyond) is that they are taking on a new and very unexpected role - that of an unpaid carer.

Most commonly this would be for a husband, wife or partner, but potentially also for a sibling, a friend, a neighbour or even their own adult child. I personally don't believe that there is an accurate figure for how many older people are carers. Age UK reported last month that 417,000 people aged 80 and over are carers (which equates to 1 in 7 people in this age group), with 144,000 of these individuals providing care for more than 35 hours a week. However, in common with the rest of the caring population, many older carers don't identify as being 'a carer' and are therefore never counted in official statistics.

My concern is that because older carers may be even less likely to engage with carers’ organisations, both from the perspective of getting support but also participating in surveys/data collection etc, they are even more isolated and underrepresented than younger carers. There is also the double whammy effect at play – we know that as people age they can become more isolated and lonely. As a society we aren’t great at supporting our older population generally, but if you also happen to be a carer you are potentially in an even more marginalised position.

Then you can possibly add in the stigma associated with the various health conditions the person being cared for may have, which in many instances will include either suspected or diagnosed dementia. It is my view that people who care for a loved one with dementia are often even more isolated than other carers due to the lack of understanding about dementia, the complexities it can present, and the long-term, progressive nature of dementia.

Why I have a particular passion for raising awareness of the needs of older carers is largely because I've met so many of them. People who tell a tale, time and time again, of how they'd planned with their spouse of x number of years (usually a lot of years) to have a dream retirement, before the love of their life developed dementia and everything changed.

Some people remain upbeat, research the particular type of dementia their loved one has, access support independently of the health and social care systems, implement their own coping methods and get on with life. But many older people just don't have the means to begin that crucial research process and access vital support, and life begins to unravel from there.

Much of the best support available is online, through social media for example, and the internet is an amazing resource for research and building knowledge and understanding, but it only works for you if you have a computer or device that you can operate, and access to broadband to connect you to this virtual world. 

Again, some older people do, and I know from my own experience that my mum, who is in her mid-seventies, is a total convert and daily user of an iPhone and iPad. But her ability with these devices has been build up largely by living in a multigenerational household where us younger members can help her. 

I suspect that my mum is in the minority though. Far more older people live alone, or are only living with the person they care for - they aren't able to go out to classes to learn about technology, nor can they just pop down to the local library to use a computer if there is no one else to care for the person they are caring for. Leaflets in the GP's surgery or a telephone helpline may bring more accessible support into their life, but the real issues go far deeper.

They can include denial, with some older people trying - with the best intentions - to cover up the health problems that their spouse is experiencing. This further isolates them from the help they need, and keeps other family members - for example adult children - in the dark. Frequently there are also financial concerns, with people worrying about paying for professional care (thus trying to provide more care themselves and often putting their own health at risk), and a lack of awareness about the assessments they are entitled to.

The very nature of ageing, where a person is likely to develop more health problems, means that older carers are at high risk of carer breakdown. The physical and mental rigors of caring for another adult mean a move into a residential care setting for the cared for person is very likely, particularly at known key-points of acute stress, for example if the cared for person becomes immobile or incontinent. 

I suspect that all of this is just the tip of the iceberg though. I feel strongly that as a society we don't know anywhere near enough about what being an older carer is really like, and because this group of people are more isolated than many others, their opinions and feedback on their experiences and views are rarely gathered systematically or on a large scale.

As a result we don't hear their voices, and policies often don't reflect the needs this group of carers have. I sincerely hope that the new Carers Strategy, which is due to be published later this year, will include key aspirations for supporting older carers, harnessing not just health and social care in joint endeavour but also engaging the wider community.

We all have a role to play in identifying and supporting older carers, and it can be in really simple ways. For example, on a few occasions I've printed off internet resources for older people who are caring for a loved one but don’t have access to the online world. On those occasions I've also made a point of ensuring I include information about carer's assessments and carer's allowance - even if a person doesn't feel they want to have an assessment or apply for benefit at that time things can, and do, change.

As Sir Francis Bacon is quoted in saying in the maxim for his book, ‘Meditationes Sacrae and Human Philosophy' that was published in 1597, “Knowledge is power.” And it is. Moreover, when it comes to being an unpaid carer, it should never just be the preserve of the young.

Until next time...

You can follow me on Twitter: @bethyb1886

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Sectioning people with dementia

Over the four years I’ve been writing this blog, I've met or been contacted by many families whose loved ones with dementia have been sectioned (detained in hospital without consent under the Mental Health Act). Sometimes the sectioning has occurred prior to a diagnosis of dementia, with the person then being diagnosed during their period of detention in a secure mental health hospital, and sometimes the sectioning has happened after a diagnosis and while they are living with a form of dementia.

Fortunately my father was never sectioned, which is just as well since I am opposed to it in relation to people with dementia in all but the most extreme circumstances. When I say extreme circumstances I'm talking about where a person with dementia is violently unwell and every effort has been made, prior to sectioning, to utilise every other avenue of care and support available.

As we know, people from all walks of life develop dementia, including people with long-term mental health disorders like schizophrenia and bipolar (manic-depression). The addition of a form of dementia for a person with a mental health disorder may result in a particular set of circumstances that makes sectioning necessary.

Equally, we know that dementia can itself cause significant changes in a person's personality, when they have no previous history of mental health illness. If those changes result in a person taking up a dangerous weapon and threatening themselves or others, again sectioning may be the only option.

These are, by any stretch of the imagination, extreme circumstances. They also affect a very, very small proportion of people with dementia. Yet figures published by the Health and Social Care Information Centre on 23rd October 2015, for the year 2014/15, showed that people aged 60 to 89 were most likely to be detained (Sectioned) under the Mental Health Act, with the number of detentions in each of these age groups (60-69, 70-79, 80-89 and 90 or over) all being over 43.0 per 100 people who spent time in hospital.

It would be a reasonable assumption, given that diagnosis of dementia is highest amongst older people, to suggest that dementia was a factor in many of these detentions. The question is, however, was sectioning the best form of care for these individuals? Most people with dementia live with progressive symptoms that cause them various challenges, and which the people around them need to respond to in ways that help to alleviate any distress they are feeling.

Sectioning is not a method of care that is likely to succeed in alleviating distress for the average person, or indeed for anyone bar those experiencing the most extreme symptoms and in the most extreme circumstances. It is most likely to result in a 'chemical cosh' being administered, and often that results in the long-term use of antipsychotic medication that is generally only removed if the person is fortunate enough to come into contact with clinicians and care professionals who have a more progressive outlook.

Fortunate is a word that I shouldn't need to use in relation to dementia care, but that is the harsh reality for some people who are living with dementia and being medicated to 'control' their 'behaviour'. Sectioning for a person with dementia, or someone who is suspected of having dementia, is a blunt tool that is still, in my opinion, used in circumstances that it should never be.

It can be used where healthcare professionals are wrongly assessing a situation, or don't have access to other methods of supporting a person with dementia - for example highly skilled social care that rehabilitates the person in a specialist care home environment that is designed for people with dementia and that provides person-centred, rehabilitative, therapeutic care.

It is sometimes used where a person with dementia is displaying 'challenging behaviour' (a term I dislike immensely) when in reality if their needs were met they wouldn't appear so distressed. In all bar the most extreme circumstances that I talk about above, a person with dementia lashing out isn't a sign that they need to be controlled by the means of a section if they won't 'co-operate' with the authorities.

Other circumstances I’ve heard of where a section has been used include carer burnout, where the family of the person have reached a complete breakdown. It’s pretty obvious, but if we supported family carers better to begin with such a circumstance wouldn’t develop. Another example can be extreme self-neglect, where a person living alone has neglected themselves to such an extent their life is in danger. Again, sectioning here is a bit like shutting the stable door after the horse has bolted. With an earlier, gentler intervention the situation never needs to deteriorate to a point where a section is being considered or used.

I'm not naïve; I know that not every person with dementia will avoid spending time in a 'secure unit', much as I would like them to. My father spent one 3 month spell in a 'secure unit' at our local hospital, was medicated and lost half of his body weight, and I don't doubt that some of the people locked in that unit had been sectioned. I just feel that sectioning is the most severe end of mental health care and should be reserved for the extreme circumstances that I detailed above, not as a short cut to ‘dealing’ with a person who has dementia and isn’t ‘conforming’ to what others expect of them.

I dislike immensely the idea of controlling people with dementia, and sectioning effectively does that. Moreover, I question the long-term good it is likely to do. Dependency on medication, the development of a whole host of other health issues as a result, severe deterioration of the person’s dementia, and complete dependency on the health and social care systems for the rest of their life. It’s not a pretty picture.

The solution? That sectioning is seen as being the extreme, last resort event that it should be, rather than a go-to ‘solution’ for ‘problematic cases’. Improvements in awareness and education around dementia, particularly the understanding around the physical changes in the person’s brain. And most importantly, the embracing of person-centred, rehabilitative, therapeutic support, delivered in an environment that enables rather than disables the person with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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Why awareness of dementia isn’t enough

Dementia Awareness Week (#DAW2016) is arguably the most dementia-focused week of the year in the UK. It’s a time for launching initiatives, publications, products and services, and for charities, organisations and businesses to raise the profile of their work. Indeed, Dementia Awareness Week was the trigger for me to begin this blog four years ago.

Amongst all of this coverage, the headline message remains fairly consistent: If you think you may have dementia, or are concerned that someone you know might have dementia, please see a GP. In essence that’s a very simple action, but it is bound up in so many other issues, emotions and concerns.

Seeking a diagnosis in 2016

Whilst in the UK we’ve become rather adept at talking about the diagnosis of dementia, or the perceived lack of it (depending on what you believe about prevalence statistics), what we are still very poor in delivering is the holistic package of care and support that should wrap around a person with dementia, and their family, when the time is right for them to seek that assistance.

We wonder why people don’t want to seek a diagnosis like having a diagnosis has become some sort of reward that people should be grateful for, but the reality is very different. Whilst for some people having a diagnosis helps to answer questions about their health that are causing them concern, for those who go undiagnosed, the question is potentially as simple as this: Why would you seek a diagnosis if you don’t feel confident in receiving the aftercare and support you need and deserve?

To find the answer as to why people don’t come forward as soon as they experience symptoms you have to look at three intertwined issues: Awareness, Stigma and Support.

AWARENESS

As a country the UK has become one of the leading nations in raising awareness of dementia. Through campaigns, most notably Dementia Friends, myths have been busted – “Dementia is not a natural part of the ageing process” – and it’s safe to say that more people know about the symptoms of dementia than ever before.

Sadly, with awareness also comes an appetite for headlines such as those proclaiming dementia to be the most feared health condition in the UK. For the record, I don’t doubt that it is the most feared health condition, but the problem with fear is it will inevitably put people off from seeking help if they notice dementia symptoms in themselves or a loved one. The more fear is ramped up, the less effective those more measured awareness-raising messages become.

STIGMA

Again, I think a lot has been done to counter stigma, most notably by people who are living with dementia speaking out and joining leading campaigns – not to mention beginning their own campaigns (examples include Dementia Engagement and Empowerment Project and Dementia Alliance International). Their voice is absolutely vital in helping to show that it is possible to live well with dementia, and that a diagnosis doesn’t mean your life is over.

The problem remains, however, that amongst older generations people still associate dementia with outdated ideas about ‘madness’ and asylums, and that is constantly reinforced by stories of bad dementia care homes and home care, poor treatment of people who are living with dementia in hospitals, ‘bed-blocking’, elder abuse, family carers who are unsupported, and a disregard for the end-of-life wishes of people with dementia. Equally, if you are a younger person with symptoms of dementia, you may feel that dementia is only something 'older people get' (a widely-held belief, but of course untrue).

SUPPORT

Whilst there are pockets of great practice in supporting people with dementia in the UK, this is confined to a patchy postcode lottery that leaves people with dementia and their families at the whims of local commissioners of health and social care services, and whatever provision is delivered by charities and community interest companies in their locality.

Yes, there is a desire from government for everyone to receive the care and support that is right for their individual circumstances (See the implementation plan for the Prime Minister’s Challenge on Dementia 2020), but the reality is very different. Changing this reality is, for me, the key to making the UK the best country in the world to live with dementia.

Offering a value-added dementia diagnosis

A value-added diagnosis offers cutting edge care and support that is about real choice and control (not just the misguided perception that you have choice and control), occupation and involvement (not tokenistic gestures), refining daily living skills (enabling rather than disabling), making transportation accessible (driving, using public transport and having the confidence to go on holiday and do the things that the person wants to do) and modifying the environment of the person’s home and community (to provide both symptomatic relief for problems like orientation, and also help the person to remain comfortable at home and when out and about).

Finally, every one of these approaches must be personalised and holistic, taking into account individual wishes, wider family circumstances, and any other health conditions the person has now, or may develop in the future.

It’s rehabilitation more than medication (in the absence of more reliable drugs to treat the different forms of dementia). It’s family orientated and far more of a social model than a medical one (doctors  have their role to play, but dementia specialist nurses and OT’s are generally more needed, and the expertise of social care professionals is paramount). And it is never, ever, one size fits all.

Ultimately to deliver this is about prioritisation and funding. But it’s also about belief in dementia care and support that is designed like this. It’s about ditching the old model of dependency and giving up (and I urge you to read Kate Swaffer’s experiences of this) and offering a value-added diagnosis that motivates people to come forward when they have symptoms of dementia.

More than just awareness

It is so much more than just awareness, but in many ways that is what makes it so important. Please use #DAW2016 to spread these messages, but don’t stop when the hashtag is old news. Dementia needs this platform every week – I strongly believe that positive change will continue to evolve, but all of us with a personal and/or professional passion for dementia has to own that change for it to happen.

"Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has." Margaret Mead, American Anthrapologist

Until next time...

You can follow me on Twitter: @bethyb1886

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