Dear G8 Summit on Dementia

Please, please remember to focus on the people who suffer from dementia as well as the diseases themselves.

It will be very easy for those at the summit on dementia to fall into a medical model discussion on dementia, the medical research on cures and ways to alleviate the symptoms of dementia but it is equally important that there is a focus on how we support and care for those who have dementia now when there is no known cure available and we focus on supporting those families who care for people with dementia, whose levels of stress may increase causing them to suffer from illness as well.

Medical advances have meant wonders for many diseases, many who suffer from cancer for example can live in hope, especially if the disease is caught early, of a cure or remission, for those beyond that hope there is the comfort of pain relief and, hopefully, effective palliative care. This does not in any way ease the distress but it does, to some extent, provide clarity on the future and provides the help of the health system.

With dementia however, there is no clarity nor is there effective medical assistance. Those who have dementia are dealt with by a social care system that is fragmented, under-funded and, unfortunately, largely ignored by social policy.

Whilst there will be a great many politicians, bureaucrats and medical experts at the summit on Dementia the reality that the actual care is delivered by families or low-paid care workers and if we want to address the care and support of people who have dementia now then it is those people the summit needs to find ways to support in order that they in turn are better able to support those with dementia right now.

Medical cures and research success take time, time that many of those with dementia right now will never see come to fruition, in addition to the medical research there MUST be social research looking at what is effective in supporting those with dementia in the absence of medical help. There must be a concerted effort to ensure that best practice in dementia care is applied across the board, there needs to be a policy of high quality standards for care services rather than one of ‘essential’ standards and there needs to be a recognition that social care services provide and equally important role in supporting those with dementia and that dementia services should be funded in the same way as any other long term medical condition.

The G8 summit on dementia is important in raising awareness of the issues but let us hope that the issues go beyond medical science and include the aspects of providing social care support to those who suffer from dementia right now.

Dear Jeremy Hunt, Focus on People with Dementia not just the Cost

Today the Government announced a G8 Summit on Dementia.

https://www.gov.uk/government/news/uk-to-host-g8-dementia-summit

While every effort to raise awareness of dementia has to be welcome, the tone of the press release announcing the event shows that the Government is more interested in cutting the cost of dementia rather than helping those who suffer from the condition.

The press release quotes Health Secretary Jeremy Hunt saying,

“Dementia requires long-term health and social care support that can be hugely expensive. Currently 70 per cent of the global cost is incurred in medically advanced nations like Western Europe and North America. But nearly 60 per cent of people with the condition live in developing countries. As their populations grow and age, the pressure on their services and budgets will inevitably increase.” &

“The G8 today have a unique chance to come together to help people manage dementia better, lead healthier lives and deliver real improvements in care and substantial economic savings.”

Yes the increase of the numbers of people with dementia will put pressure on budgets but, surely, the primary focus has to be how to give people with the condition the best possible quality of life as the disease takes hold.

Yes we need to find ways to eradicate dementia but we also need to help people NOW rather than solely focus on cures that could be many decades down the line.

Yes there are still economic troubles yet to focus on the cost of dementia rather than improving care and support for those who need it now is a shameful way for a Government to act. Social care funding has decreased year on year for at least the last five years and the costs of providing social care have spiked – food and energy inflation have a huge impact on care provision – and the Government has done little to redress this issue.

The press release today effectively labels those with dementia as a cost burden to the State and I hope action will be taken immediately to apologise and redress this.

Routes, Routines and Dementia

To anyone with knowledge of Neuro Linguistic Programming (NLP) the phrase “the map is not the territory” will be familiar, although the phrase pre-dates NLP and was actually coined by Alfred Korzybski in his work on General Semantics.

To those not familiar with the idea, simplistically, the concept is that none of us sees the true reality of the world. What we see is our perception of it through our own personal filters that are embedded within us as a part of our experiences in life, in other words, our own internal map. An example would be witnesses to an accident or crime who come up with different versions of events. The events are reality but how they are viewed depends on those individual’s experiences and filters.

Our internal maps guide us and guide our responses to the situations we find ourselves in. If there is nothing on our map to help us in certain situations we become unsure or maybe even panicky, in other words the map is our comfort zone. Yet after we have delved into the unknown our map rewrites itself to encompass this new experience and, in the same situation in the future, we are likely to repeat the actions that successfully saw us through it the first time.

Occasionally what we do may not actually be the best way to deal with that situation by we will continue to do it that way because that is how our internal map guides us and we may not bother to think of possible alternatives.

In general terms this is why change is so often difficult. We are moving into the unknown and our minds are guiding us to stick with the tried and trusted even if that is not the best route for us in the long run. That is why certain addictions can be difficult to break because the addiction has become so familiar it means moving off the chart and into the unfamiliar to break the habit.

There are, naturally, conflicting views on this theory but it does give us a useful tool for thinking about social care.

Imagine you have a map and you are using it to find your way to a specific destination, you just follow the shortest possible route from A to B and off you go, with occasional reference to the map to make sure you are on the right road. Now imagine that halfway along your journey your map changes and suddenly there is a huge blank space between your starting point and where you want to get to? How would that make you feel? Panicky? Frustrated? Angry?

How must it feel to those who have dementia when their memories, and therefore their internal map, begins to fail?

Our built in Sat-Navs help us move from task to task without having to think. Our morning routines, for example, are often done on auto pilot, yet if we suddenly did not know what we need  do we could find ourselves unintentionally missing breakfast or completely forgetting to wash. But everyone of us has a different morning routine and those different ‘maps’ could actually cause distress even when we desire to be helpful.

If I tried to impose my ‘route’ on to your morning routine you’d probably speak to me very unkindly!

Even where someone’s own map has developed a blank space trying to impose a new routine may well feel ‘wrong’ even if the person cannot articulate why that feels wrong (that can even happen to us in everyday life sometimes something doesn’t feel quite right does it? So we will question whether or not we should do it even if we can’t quite put our finger on it).

Understanding and supporting someone with dementia is not just about being able to do routine personal tasks for them. It is about understanding the complexities of the disease and how your actions might impact on people’s lives. We need to learn to be able to read other peoples maps so we can provide them with support along their own routes to achieve the goals they want

Me, Food & Social Care

Apparently I am an overly fussy pernickety eater although I would prefer to say I have a truly sensitive palate which means that there are many foods that are not palatable to me! Many have tried to test and trick me but always have failed.

It is not something that has any significant impact on my life and I doubt I am the only person like this.

Yet what if someone with a similar palate found themselves suffering with dementia and placed in a care home. Without knowing the persons likes (because the dislikes will be far too many to mention!) it would be easy to try and give the individual just what is on the menu. Personally if that happened to me I would simply not eat what was in front of me, but how does that act get viewed by the care provider? Am I being awkward? Am I refusing to eat? The more I insist that I will not eat what’s in front of is my behaviour becoming ‘challenging’?

If I have no relative’s to speak up for me to explain my eating foibles what happens next?

If I am refusing to eat what is in front of me yet I don’t have the capacity to express that how can I be sure that my behaviour is interpreted correctly? And how will my non-eating be reacted to?

If I lack capacity then someone will make a decision in my ‘best interest’ under the guidance of the Mental Capacity Act. Obviously it would be in my best interest to eat yet if I were forced to eat something that tasted extremely bad to me the more likely my behaviour would become more challenging and I would probably be labelled as such and because of my limited likes it attempts to try different foods would also probably fail and lead to more ‘challenging behaviour’.

This is, of course, hypothetical yet there are, undoubtedly, many people in similar situations, it may not be with food but with other aspects of daily life.

This is why carers and families are so important in the social care system. Social care professionals need to understand the person who needs care services and, where individuals are unable to articulate their needs, listening to carers and families is vital in providing quality personalised care.

The quality of social care is not just about now, it is about the future and the quality of care we want to receive in the future if we find ourselves needing care services. Quality services can only be achieved by understanding the individual and, equally important, their individuality. By the time care ‘professionals’ become involved in a person’s needs it is likely those needs have already progressed to a point where understanding individuality becomes more difficult making it ever more important for those professionals to engage with carers and families to truly get to understand what makes the person needing care service tick.

Carers and families have a responsibility too. As someone they love begins to deteriorate through age-related conditions they should prepare that information to ensure they are able to pass it on. Obviously, as individuals, we also have a responsibility to make sure those things are known in case we need social care services in the future.

In reality the real onus is on those paid to provide social care services to ensure they are providing personalised care based on the information given to them by the individual, their carer’s and their families.

If I ever need social care services I want those people providing those services to understand all of my needs and provide care based on those needs. Undoubtedly you do to. So let’s focus on moving toward that for the benefit of those who need care services now.

Re-Igniting Dementia Awareness

Familiarity, they say, breeds contempt. Perhaps it is more accurate to say that familiarity dulls awareness. As we deal with things day after day everything becomes so routine we become less conscious of what we are doing and settle into a humdrum existence of habitual practice without actually reflecting on what we are doing.

As Dementia Awareness Week kicks off it is obviously a naturally perfect time to raise the awareness of those who work with people with dementia and to vigorously re-ignite understanding of dementia and the impact it has on the lives of those who need social care support.

The first question to ask yourselves or, naturally, put to those who you supervise, is why does this individual need the support we give? In many situations social care workers have little time to reflect on individual needs, especially where the notorious 15 minute visits occur, it is a case of get in do whatever the job requires and leave again. Yet an understanding of why those jobs are required gives purpose to the work and can re-invigorate the efforts to provide a better service for the individual.

Understanding why someone needs social care services must completely go beyond what the individual is unable to do, hence the need for the actual service, and focus on why they are unable to do those things. To say that an individual has dementia is not enough. What type of dementia do they have? How does that type of dementia affect an individual? How is this individual particularly affected?

Another aspect of familiarity that often totally impacts on the way we do things is not to notice those small incremental changes in people we see every day, or indeed in ourselves.

For example when people lose or gain weight, any serious dieter knows that those close to them are less likely to comment on their weight loss than a person they see less regularly and immediately. Or, similarly, we can look at an old photo of ourselves and realise that we have changed without ever really noticing those changes taking place.

Obviously in the same manner those who provide front line care can fail to notice small incremental changes and deterioration in those they provide care services for, those declines in mobility or mental functioning that are so gradual that they slip past conscious awareness but accumulatively mean the individual has deteriorated considerably over a period of time.

Re-igniting awareness must include assessing those changes in an individual, care workers should be encouraged to reflect on those changes and what they mean to the individual and the care services they receive. This is an essentially important aspect of care as while an individual may receive regular care reviews, care workers may not report those small changes as they have gone unnoticed and yet spotting these can prevent a crisis later on and ensure better care provision in the long run.

Those who own and run services providing social care services for people with dementia should use the opportunity of dementia awareness week to include re-igniting awareness through their staff development activities.

It is absolutely completely essential to raise awareness about dementia nationally yet we should quickly and rapidly recognise the importance of re-igniting awareness amongst those who provide care services to really boost the quality of dementia care.  

How do you feel about memories?

Remember the time you first fell madly head over heels in love with someone? No matter how it all ended (if it did) you can probably recall those feelings that swept through you at the time and carried you away though that first burst of youthful infatuation with associated physical feelings of heart racing, skin tingling and shortness of anticipatory breath.

Now recall a time of great sadness in your life. How did you feel then, how did you feel physically, in all probability your posture slumped making you breathing shallow. You may also have been tearful and short-tempered as you feel the universe is against you as the hurt digs deeper into your soul.

Now success, remember that time when you were truly and utterly thrilled with yourself for achieving something you did not think was possible. Recall that elation and the feeling of confidence running through, a confidence that made you feel invincible and that there is nothing you can’t achieve in the future. Remember how you felt physically, probably the feeling of strength coursing through you, holding your body straight and held, literally, held high.

Now what about right now?

Did you notice, as you read through those paragraphs, that you experienced some of those feelings here and now.

As human beings our memories are associated with our emotions and feelings. We are not, generally, like computers were recall is just a copy of a saved file. Recalling the past evokes associated emotions right now, think about your favourite slushy song and how it makes you feel as you remember why it holds such special memories for you.

The stronger the emotion of the original event, the greater likelihood of it creating a strong emotional feeling within you right now.

If we want to truly improve the lives of those who need social care services, particularly for those with dementia, then we need to understand the power of memory and the effect of recalling feelings. We need to understand each individual’s history in order to ensure we communicate with them in a way that will produce positive feelings now and, more complexly, in care homes there is a need to understand that individuals will have differing emotional memories about the same historical events.

For example, one person’s memories of World War Two could be one of success and achievement through victory and survival, a successful battle against the odds where camaraderie was an essential key to that success and resulted in life-long friendships that shaped the individual’s life. For another, perhaps sitting in an adjacent chair, the memories could those of loss and sadness perhaps tinged with guilt for surviving when so many others around them lost their lives. For both people a care home playing “We’ll Meet Again” will evoke memories and emotions but completely different ones.

Or, to be more topical, look at the reaction to the passing of Margaret Thatcher, the mixture of adoration and animosity dependent on the individual’s experiences 30 years ago. Those with really strong emotions of her are likely to retain those memories and emotions and, in another 30 or 40 years when they need care services and images of Mrs Thatcher will evoke that adoration or animosity and the care staff will probably be oblivious to the reason why.

Social care is not just about physical care tasks, it is about helping people emotionally as well as physically. This cannot be achieved without understanding feelings, emotions, memories and communication. Social care needs to understand the people who need care, their families and the social background that frames their shared experiences and memories and the how these affect individuals.

With the increasing emphasis on health and social care integration there is a danger we lose the social model of care and the social impact of ageing as well as the social importance of memories. Let’s hope that in the future we do not look back with sadness as we failed to understand the importance of emotions in social care.

Let’s be totally, brutally honest, Governments don’t want to tackle social care.

Let’s be totally, brutally honest, Governments don’t want to tackle social care.

They may want to be seen as dealing with social care but the reality is to tackle it properly will cost money and Ministers would rather spend that money on things that get them re-elected than on an area which, frankly, does little to ignite the public imagination.

There are, of course, many individual MPs who are intensely passionate about social care as the recent debate on dementia showed, many have personal experiences of dementia, ageing and social care and they bring at least some balance to the lack of real debate on tackling largely unanswered questions on the future of social care.

While social care may fail to ignite public imagination it does, frequently spark public indignation. Widely publicised cases of abuse or of people having to sell homes to pay for social care  lead the social care debate and, while the majority of those who receive social care services are satisfied with their care, it is the negatives that drive Government reaction to social care and influence policy making decisions.

This, unfortunately and detrimentally to social care, means that the reality of today’s society is ignored completely in favour of short term reaction.

The reality is people are living longer and because of that there are an increasing number of people who need or will need social care services as the get older. Ageing increases to probability of age related conditions in turn increasing the need for people needing support in their everyday lives. Whilst, rightly, people are encouraged and supported to remain at home as they age there also has to be a recognition this will not always be possible nor will it always be in the best interest of the person. So we also need to recognise and acknowledge the place of care homes in the social care system.

The perception of care homes is, perhaps, outdated. The image of a home for retired genteel folk is outdated and the reality is that those who do go into residential or nursing care do so at a much later age and those care providers are having to become increasingly specialised in dealing with age related conditions, such as dementia, incontinence and osteoporosis. Yet the need for such specialism, and the cost of it, goes largely unrecognised in Government policy.

Naturally not all care providers are perfect and there are certainly those who do not provide the necessary training in the specialisms required and those whose sole aim is profitability rather than care provision yet they can only exist in a culture that doesn’t focus on the reality of social care and policy that fails to meet this reality.

The ageing society also provides other challenges to social policy that Governments have failed to tackle. People with disabilities are also living longer and need services to meet the challenges of ageing. Many people with learning disabilities are unknown to social services and support during their life by their parents, but as they age, and their parents age or pass away, they are increasingly in need of social care services yet social policy has yet to recognise this demographic and appropriate services are in woefully short supply.

Not everyone who needs social care services is over the age of 65 and that needs to be equally recognised. For these individuals the issue of who pays for social care is unimportant and many of the health related ideas of integration are minimal compared with the need for integrated services in housing and employment.

If society is to provide the best possible social care to those who need it we need to recognise the changes to society and the increasing importance of social care to our society. We need to change how we think about social care and recognise that ageing comes to all of us and our own future is equally tied into social care policy as that of those who need social care services now.

Government, of whatever colour, must lead the change in thinking about social care, it must raise the debate for all who need social care services, no matter what age and it must find the money to meet the demands of social care now.

Let's Not Forget Physical Decline

There is some fantastic work and developments focusing on the needs of those who suffer with Dementia. We have had the ‘Christmas to Remember Campaign’, the Department of Health announcing £22 million being made available for dementia research projects and the work of the Dementia Challengers has been outstanding in raising the awareness of the disease which impacts on the lives of millions.

Yet while dementia is the most prevalent of the age related conditions that could impact on the life of an older person there is, perhaps, a danger that the discourse of elderly care becomes one where adult social care for the over 65’s is solely equated to dementia . Whereas there are many other age-related conditions which are debilitating for individuals and which also need to be fully addressed.

Parkinson’s disease affects around 127,000 people, the majority of whom are over the age of 65. It is a disease which leads to physical, rather than cognitive, decline as the disease progresses but can also include other problems such as depression, pain and constipation. As the physical deterioration progresses it becomes harder and harder for the individual to make the tasks of daily living and increases the need for help and support.

Naturally it does not take a huge leap in imagination to think about how you would feel if your body no longer functioned properly, yet you retained you cognitive awareness, imagine the frustration and potential effect on your mental health. Being unable to undertake the simplest daily tasks without help can be frustrating, I know, from personal experience how embarrassed my Nan feels when she cannot even make a cup of tea for guests when they call.  

Other physical deterioration may also affect an individual. Sight, in particular, is subject to deterioration through many different conditions such as macular degeneration, glaucoma and cataracts. As people lose their sight they may need social care support to help them in their everyday lives to make adjustments in how the undertake daily tasks and to reduce the risks of physical injury.

Sight, obviously, is not the only physical deterioration that can come with age and we need to ensure that anyone who needs physical help receives the support they need.

Naturally all of these physical conditions can also affect those who have dementia. There is always a danger that those who provide care and support only see the dementia rather than the range of issues affecting an individual. It is easy to focus on the one condition of cognitive decline yet ignore the other issues that a person needs to be supported with.

Yet we also need to ensure that those who do not have dementia but have other age related conditions of physical decline also receive the correct level of support. Physical decline can lead to other issues, such as being prone to falls, which then further impact on a person’s life.

Social care services must focus on all needs and it is important to ensure that alongside the excellent initiatives for dementia people with other conditions and diseases are recognised and supported.

A Few Words about Words

A word about words or maybe a brief discourse on discourse, how language is used is important in society and we have a debate now on how Dementia is referred to (see the excellent D4Dementia Blog).

Despite Shakespeare’s words, “a rose by any other name would smell as sweet”, if a rose was called a manure fed weed, chances are that you would not even bother trying to smell it in the first place!

Sometimes the changes to words we use to label something are good, we only have to look at the term learning disability, previously known as mentally handicapped, mentally retarded (mental retardation is still used in the U.S.A.), feeble mindedness etc. and we have the evolution of the label lunatic to mental health issues. In such instances re-labelling the terms we use reduce the stigma attached to the old ones and can help toward promoting a more positive image of individuality.

Many times labels are used by those in power to delineate ‘us from them’, the classic example being a terrorist in one state can easily be called a freedom fighter in another. Governments re-label in different ways constantly, usually as way of marking out their difference from the previous one – for example the Department for Children, Schools and Families was quickly relabelled the Department of Education when the current Government came to power, the functions are largely the same but the idea is to display the current ideology in the Ministerial office.

Labels also change as a form of aggrandisement, for example in job titles where those who collect our rubbish are now waste management technicians or those trying to sell us insurance become Financial Security Consultants, equally labels can be used to demonise and stigmatise where they become stereotypes in order to pit one section of society against another.

Whatever the reason for changing labels and the way we talk about things is, ultimately, about changing perceptions of how people in society view something.

What it rarely does is change the reality of what happens. Waste management technicians still collect our rubbish on a regular basis, the violent actions of an individual whether they are a freedom fighter or a terrorist remain the same and Ministers still sit in comfortable offices whatever the name of their department at the time.

So those with dementia or neurocognitive disorder, will suffer the same symptoms, require the same level of care and support and families will live through the same fears no matter what the condition is labelled with. Yet what about further up the social care ladder?

As the cases of dementia continue to grow as the population ages what difference will the label ‘disorder’, rather than disease, make to those holding the purse strings of care and support. It would be interesting to test public perception of the two words and see which is considered more worthy of tax payer money and how politicians in power would change their policies dependent on the word used. Many have campaigned to have dementia recognised as a disease in order to receive proper health funding for those who suffered from it, where does the word disorder leave their efforts?

It is also important to consider the people who actually suffer from it. Throwing new terminology at a person with cognitive decline and probable short term memory problems does seem foolish. One of the keys to personalised care and support is using language which is familiar to the individual and be changing terminology in can confuse and bewilder, especially when the new terminology is particularly vague, after all neurocognitive disorder could easily be interpreted as the result of a head injury, or more connected with mental health issues, something in the realm of psychiatry rather than the physiological needs that can be associated with dementia. In the wider world the public are more aware of dementia than ever before, throwing in new terminology muddies the waters at a time when increasing awareness is needed.

Words are important and the way we use language has an impact on how society as a whole perceives something yet the most vulnerable in society, those with dementia or those with learning disabilities will always have some difficulty in grasping new labels attached to conditions they may have which in turn can further confuse and bewilder them.

Although the possible changing name of dementia has sparked this debate it does not just apply to that, anything we re-label, any terminology we use can cause confusion amongst those who need clear, precise and understandable language to support them in their day to day lives. Whatever the reason for wanting to re-label dementia those who wish to do so should consider how their new terminology will improve lives for individuals and if it does not, why bother?

YOU are getting older ACT NOW

One in three people over the age of 65 will die with some form of dementia (Alzheimer Research UK).

Given the latest statistics suggest that there are over 10 million currently over that age in the UK we are looking at around 3 million people having dementia, as the population grows and ages this means dementia will impact on even more people in the future.

Big numbers generally make our minds switch of, the bystander effect kicks in and we just assume it is someone else’s problem, not our responsibility and best left to ‘professionals’ to deal with. Yet we need to put the issue into perspective.

But if you stop and break it down a bit can we afford to be bystanders?

How many brothers or sisters do you have? I have three, so the chances are that between the four of us at least one will develop dementia. A daunting thought and enough to make me think that action needs to be taken now so if I, or anyone else in my family, develops dementia the best possible care and support is available. Although many would like to deny it we all age and as we age we creep closer to being the one in three who will develop dementia and if we do not have the infrastructure in place what sort of care and support we will receive.

Think about your future as you age. You may develop dementia or you may find someone you love develops it and you have to be their primary carer. The issue may not even be dementia, other conditions such as Parkinson’s disease or long term heart conditions etc. Imagine being in a situation where you are unable to fully engage with your family or friends because you are physically unable to make even a simple cup of tea or having issues with continence that leaves feeling embarrassed or ashamed.

Stop, and start to ask yourself how well prepared in the country to provide YOU with the support and care you need later in your life.

As you think about your future also think about those who are in that situation now. There are millions caring for someone they love but without real support from society because they ‘fail’ to meet the eligibility criteria set by bureaucrats. Local authorities, who supply most social care funding are facing ever tightening budgets and services are declining because of this. Take time to think about the pressures on elderly people in the current economic climate where the costs of heating and food are climbing but help from the state is declining.

You are getting older, and as you get older there is an increasing likelihood that you will need social care support either for yourself or for someone you love. We are an ageing population and it is important for us to act now to secure our future and also those who need support services today.

We cannot be bystanders in the ageing process and the need to ensure society provides its best for those who need our help.

New Ministerial Team MUST Act on Social Care Now

The latest figures from the NHS on council funded care services show, one again, that there has been an overall fall in the numbers of people receiving services. 110,395 less people received services in 2011/2012 a drop of 7%.

At the same time the Royal College of Physicians warn that acute hospital services are on the brink of collapse because of the increasing number of elderly patients, particularly those with dementia, they claim that many feel that older people ‘shouldn’t be there’ and are calling for a redesign of services to better meet patients need (click here for RCP press release).

In other words it appears we are seeing a reduction in community care services resulting in increased pressure on the NHS and this is an issue that needs to be tackled immediately.

This situation is one that can only get worse if left unchecked by the new Ministerial team at the Department of Health.

Kent County Council, for example, are proposing (in their 2013/14 budget consultation) to reduce spending on adult social care by £18m, a cut of 5% and while they claim to be able to do this without harming care services it certainly seems the reduction in council led services is only increasing those in the NHS. Undoubtedly other councils are proposing similar cuts in the adult social care budgets which will lead to more elderly people entering hospital.

The popular press has lead the campaign on who should pay for social care and it seems likely that the Dilnot proposals will be introduced. However this does not solve the issue of how much social care costs and, it seems now, we have some evidence that lack of funding in social care simply transfers the issue to the NHS and, undoubtedly costs the state more in the process.

Care for older people in England, particularly those with dementia, needs to be examined properly and the costs of providing the best possible care acknowledged.

It is only by properly assessing the cost of social care that the issue of who actually pays for it can be sorted.

We have a new Ministerial team in the Department of Health and they must put the care of the most vulnerable in society at the top of the list otherwise the crisis in care will only continue and lead to a greater crisis in health provision.

Pass It On: Sharing Social Care Knowledge

If you were to ask a front line care worker if they had heard of Skills for Care, the Social Care Institute of Excellence or the National Skills Academy for Social Care my guess is that the majority will have not.

It is not that they need to have heard of these organisations but it is essential that they hear about the work produced by these organisations and that is where social care leadership is so important. We need to disseminate information, new knowledge and best practice to those who are actually delivering care services to those in need.

Last week, for example, Skills for Care launched a new guide – Supporting Dementia Workers – which sets out 8 Common Core Principles for supporting people with dementia.

Earlier in the month the Social Care Institute of Excellence released a briefing on Preventing loneliness and preventing social isolation among older people and in a month or so the National Skills Academy for Social Care will be launching its Leadership Strategy for Social Care.

All very good work but all pointless if it does not reach the majority of social care providers and social care workers.

The responsibility with obtaining and passing on what is produced by these organisations lays with the care providers and the really good providers will actively seek out what’s new and put it into place but there are many other providers out there who will not.

These are not necessarily bad providers, but could be ones that are just inwardly focused on their business without taking the time to look beyond their own service to what they could do to further improve the lives of the people they provide services for. Other, less good providers, will use every excuse in the book not to look beyond their service - “We don’t have enough time for that sort of thing” etc – or they believe that they know best.

This is not just related to the work of the three organisations mentioned. A few years ago when I delivered a series of training seminars on staff development it was obvious that I was “preaching to the converted” with organisations interested in staff development who were sending their managers to the course, similarly only those outward looking providers send staff to conferences and seminars. Unfortunately it is the “unconverted” that we need to reach to ensure that they understand and deliver the knowledge ad best practice to their workforce.

The challenge, therefore, is to find ways to reach those providers who do not look for new information or believe they do not need that information.

Perhaps one solution is for the Care Quality Commission to enhance their registration of managers to include a requirement that all registered managers must provide evidence of Continuing Professional Development annually in order to maintain their registered status. This is a standard requirement (albeit not annually) for most other registered  professionals and it would ensure that all Registered Managers undertake some form of external training that would extend their wider knowledge of new developments in social care.

Additionally those commissioning services could take a more proactive approach to ensuring best practice is disseminated. Where local authorities offer conferences etc for providers we come against the same problems of only the good providers sending staff to them so commissioners need to be more active in ensuring that those they pay money to are fully up to date with best practice and new knowledge.

There are many sources of information, knowledge and good practice in social care but we need to make certain that all of reaches those who are actually delivering front line care services if we want those in need of services to benefit from it.

N.B. For Tweeters:   National Skills Academy for Social Care - @NSASocialcare

                                    Skills for Care - @SkillsforCare

                                    Social Care Institute of Excellence - @SCIE_Socialcare

Personal Thoughts on Dementia

Quite a few years ago I did a stint as a charity fundraiser (yes I was a Chugger for a short while) and during that time I was raising funds for a dementia charity. It was during that period I had one of the most memorable yet heart wrenching conversations that has stayed with me until this day.

On the streets of Sittingbourne in Kent I met a man who told me about his father who had dementia. His father lived with him and his family but had been deteriorating rapidly and the man was faced with the decision of whether or not to ‘put’ his father into care.

It was obvious that on health grounds the decision was logical but it was clear that the man felt a sense of failure about not being able to look after his father and the option of sending him to a home was an option of last resort that was accompanied by a huge sense of guilt and the pressure of having that decision was tearing the man apart.

On a more personal level my own Grandfather developed dementia, my uncle cared for him but had to work to and it was when he returned from work one day to find my Grandad had tried to microwave some food in metallic dishes that managed to blow the microwave, but luckily not cause a wider fire, that the family seriously had to consider whether a care home might be the most appropriate option.

Dementia is a disease that affects the individual but one that also has a serious impact on the families of sufferers and with the predicted rise in numbers of people with dementia even more families will feel the impact of having to make such decisions along with the feelings of guilt and failure.

The news of increased funding into the research dementia is welcome there it cannot simply be research on treatments and cures. Whilst the application of medical research is the best approach in the long term cures and treatments can often take decades to come to fruition. In the meantime we need to tackle the social impact of the disease, provide more help and guidance to families and raise public awareness of all the issues on which dementia impacts.

It would be good to see greater research on how we can improve social care to meet the needs of those with dementia. There is, currently, a lot of good work going on in this area and we need to make certain that this reaches a wider number of care providers and becomes a standard for dementia care.

Today’s announcement is a starting point, one that will hopefully be extended in the social care White Paper due shortly.  The amount promised for research stills pales compared with research spending on other issues yet it is a start in recognising such an important issue. But we also need funding to support the care of people with dementia and funding for support services for the families who have to come to terms with the impact of dementia on their lives. 

Whose Responsible - Unblurring the Boundaries Will Help Care Provision

Much of the debate surrounding social care at present focuses on funding issues, who pays, how much should individuals pay etc. yet there are significant other issues that need to be addressed.

One of these is how the interface between public services and private providers operates.

Yesterday’s report on healthcare in care homes published by the Care Quality Commission has, perhaps inadvertently, highlighted the issue of where responsibility lays at this interface.

The report states “some homes did not adequately demonstrate person-focused care planning” and “just over half of residents (55%) were aware that they had a care plan in place that sets out their needs.”

Yet contrast this with another recent CQC document entitled ‘What standards you have a right to expect from the regulation of your care home’ (see document here) which states that people who use services should “get the care that you and your social care professional agree will make a difference to your health and wellbeing.”

Comparing the two does raise the question – who has responsibility for care planning, the home or the social services professional? And who has the responsibility for ensuring that the person using the service is aware of that plan.

Obviously  it is important  that both work together  with the individual in preparing the plan but where does the ‘final’ responsibility actually lay? Implementing the plan of care naturally falls with the care provider but once a person enters a care home how much monitoring of that plan takes place by social service care management?

Added into this needs to be the role of healthcare professionals in care planning, the demographics of care provision have changed dramatically over the last 20 years, people are likely to be much older when needing care home provision and are likely to have much greater health needs, particularly due to the fact that dementia is not classed as nursing need despite being a disease, so many of those with dementia are in ‘residential’ rather than ‘nursing’ homes.

With older people in care age related medical conditions need addressing in care planning – who is responsible for ensuring that appropriate health professionals are involved in this? In addition there should also be some form of involvement by those health professionals in assessing the health care needs on a regular basis.

Quite rightly there is a drive to ensure personalisation and independence for all those who access care services but at the same time this should not diminish the responsibility of professionals to ensure effective care planning is in place. Unfortunately the current system has an interface between public service and private provision that blurs the boundaries of responsibility and the only people who lose out because of that are the people who use services.

As the debate on the future of social care moves forward we must look beyond the question of who pays and play closer attention to the issues and responsibilities that have a direct impact on the quality of care provided.

Improve Dementia Care Sooner Rather Than Later

Dementia is a disease, or rather the generic term for a group of diseases that are classified as degenerative diseases of the nervous system. The World Health Organisation classifies these diseases, Alzhiemer’s Disease, for example, is listed as “a primary degenerative cerebral disease of unknown etiology with characteristic neuropathological and neurochemical features. The disorder is usually insidious in onset and develops slowly but steadily over a period of several years” in the WHO International Statistical Classification of Diseases and Related Health Problems 10th Revision, more commonly known as ICD-10.

Given that the various types of Dementia are a disease it seems surprising, yet deeply disturbing, that the NHS is failing to provide adequate care for those who have dementia http://www.bbc.co.uk/news/health-16206169

One of the reasons could be that care for those with dementia in the UK falls under the social care remit rather than the health care one. Therefore the expertise in supporting people with dementia is detached from front line health care.

The problem is, perhaps, exacerbated by the fact that few people access hospital services because of their dementia. The reason for being hospitalised is for other health reason, yet it has to be born in mind that these reasons can be related to the dementia, for example a cut or burn could be the result of failing to remember something, so true, holistic care needs to take into account all aspects of the persons health.

One of the answers being touted is training for NHS staff, while this can only help it may not be enough to solve the problem. Training imparts knowledge but that is all, how that knowledge is used in practice is a completely different matter. To ensure that the knowledge gained through training is used effectively their needs to be both good staff development and effective leadership at all levels of the NHS. And to achieve this, managers and supervisors, at all levels, need both effective leadership and communication skills along with a knowledge of dementia themselves.

An additional area highlighted was communication between hospital staff and relatives of the person with dementia. This is an important area to be addressed. Dementia is a disease that can have a great impact on a family, the worry about a loved one can be tremendous, along with the guilt of feeling inadequate in caring for them. If this is made worse by a) poor care & b) poor communication then it is not only the patient that the hospital is failing.

Again the solution is better knowledge, better practice and better communication skills.

Perhaps it is now time to take a fully integrated approach to health and social care. Why not have social care specialists on elderly wards? Why not recognise that social care is best placed to provide the support for people with dementia in hospital. This is particularly important in ensuring there is sufficient after care when the person leaves hospital, especially if they are returning to their own home.

The numbers of people with dementia are predicted to rise sharply and unless action is taken soon the situation will only get worse, so let’s hope we get action sooner rather than later.