Why activity is everyone's business

Go into most care homes and you will see a familiar array of staff, from carers to chefs, housekeepers to maintenance personnel. A role you will also often encounter is that of an 'activity coordinator'. All of my dad's three care homes had activity coordinators, all of whom were women and some clearly more suited to the role than others.

In essence an activity coordinator is charged with ensuring that everyone living in the care home gets to do activities that they want to do and enjoy doing. The scope for those activities is largely dictated to by budget, with some care homes having extensive 'activity' programmes that include trips out and even holidays, while others literally scrape around to find pens and paper for residents who want to draw.

Whilst I am the first person to advocate that people living in care homes should have opportunities to engage in 'activity', I am not a fan of the 'activity coordinator' role. Why? Because in my view activity is everyone's business.

By creating a role in a care home that is centred around activity, everyone else working in the care home automatically defaults to that individual for anything related to activity. This is seen with other roles, where everyone goes to the chef for matters relating to food, and everyone goes to the maintenance person if something needs fixing.

The other reason I'm not a fan of this role is that activity is about everything that happens in the day, from the moment you get up to the moment you go to bed. Given that people living in a care home spend most of their day with care staff, it is vital that care staff recognise that everything they do to support that person is, in itself, an activity.

By taking this approach, it is then much easier for care staff to appreciate the need to support the person to do as much as possible, thus retaining maximum independence, rather than just automatically doing everything for them and effectively de-skilling them and taking over their life.

Making a cup of tea, having a shower, getting dressed - these are all activities, just as much as bingo and singing groups. And they can all be expanded upon to go beyond the purely functional. So, for example, making a cup of tea could be about doing it 'the old fashioned way' with loose leaf tea and a tea pot, sparking a reminiscence session. Having a shower could become a full on pampering session, with some gentle exfoliation of hard skin, a massage with body lotion afterwards or a full-on salon-style blow dry. Getting dressed could be about coordinating colours and outfits, dressing up or dressing down, and might even lead onto a mending session if clothing needs some TLC.

Throughout any of these 'activities' songs could be sung, conversation could flow, laughter could be triggered and memories could be drawn upon and mulled over. The problem is, if your care home has an activity coordinator, he or she is unlikely to be involved in these 'care' related activities, and thus these daily occurrences just become bland tasks for the care workforce to 'get through'.

In my consultancy work with care providers, I look at the structure of the workforce in a care home, who is responsible for what, how those responsibilities are carried out, and whether there is, in fact, a better way of approaching how the care home operates. A huge focus for me is how holistic a care home can become, which in practice means frontline staff taking on a more fluid role that responds to the individual needs of the people living in the care home and treats every interaction as an opportunity to create a special moment with that person.

It is irrelevant if those moments will be remembered, and the fact that they might not is no reason not to create them. There is often a belief that group 'activity' sessions are more memorable, but actually as a person's dementia advances, it is often the one-to-one time spent doing something very simple and very familiar, like eating, drinking, folding laundry or making the bed that enhances wellbeing and quality of life more.

Persuading staff to be creative and expressive whilst providing this type of essential support is often very challenging; many would much rather just default to the activity coordinator when conversation and interaction is needed. But care staff who approach their work with an emphasis on both supporting the person and creating an activity out of everything they do generally have much more job satisfaction.

So what would I suggest care providers do with their activity coordinators? By all means turn them into event managers, charged with creating those important community experiences in the care home, and indeed helping people living in the care home to get out and about. If they are great communicators and creative types (which they certainly should be!), then utilise that to show other staff how to communicate more effectively and be creative in their support.

Encourage all of your staff to show off their talents - you may have some real gems who can play instruments or sing beautifully, people who are good at needlework, crafts, gardening, cooking or DIY. Support them to bring those talents into their job, whatever their 'official' role is meant to be. And likewise with your residents and relatives - find out what talents they have and how they might express those for individual benefit or the greater good.

The best care homes do this seamlessly, because they appreciate that activity is everyone's business and they facilitate that way of working. It may mean staff allocations need to change or rotas need to be adjusted. It may mean that someone in one role is actually much more suited to something else. It will almost certainly need training, mentoring and monitoring, but ultimately you will have created a care home far closer to what a home truly is, and what living a life in a care home and working in one should represent.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Special Measures – My view

Last week's announcement that adult social care providers who deliver sub-standard care face being put into Special Measures from April 2015 proved to be quite a momentous event for me. I was involved in the announcement (details here), and it understandably produced a lot of mixed reaction.

I'd like to use this blog post to clarify some of my thoughts around this issue in more detail. The singularly most important thing to stress in this debate is that the majority of care is good care. I have written extensively about the amazing care my father received from many dedicated and caring professionals (for examples see: 'Continuity is key', 'Sense and simplicity', 'End-of-life care - A very personal story') some of whom are still good friends of my family. The coverage I have given to the positive aspects of my father's care on D4Dementia and elsewhere far outweighs coverage of our negative experiences.

It is widely known that adult social care has a poor reputation, badly tainted by the actions and culture of a minority whose conduct hits the headlines in a way that the many positive stories of wonderful care never do. Yet, as I said in my statement in the press briefing for the Special Measures announcement, "Most care is excellent. Most care workers are dedicated, and often undervalued, professionals". 

I am the first to acknowledge that there are huge issues in the recruitment and retention of good care workers (see this blog post), and that the terms and conditions that many work under fall well short of the professional standing and associated remuneration that I would like to see given to care work. But none of this is an excuse for poor care. Many good care workers have terms and conditions of employment that do not fairly reflect the work that they do and yet they still deliver great care, and of course the many volunteers who help to prop up services earn nothing at all and often make an amazing contribution to the lives of vulnerable adults. 

None of that in any way belittles the issues around employment of care workers, but aligning debates about employment with debates around poor care almost gives the impression that unfair employment conditions are an excuse for poor care, when there can never be an excuse for poor care. I know for a fact that the many wonderful people who cared for my dad weren't paid enough, or valued by their employers as they should have been (one of my dad's care homes had 4 different owners in the time he lived there), but they were fundamentally dedicated and caring people who did amazing work in often very difficult circumstances.  

In terms of the proposals about Special Measures, many people have asked me what will be the difference between Special Measures and the powers CQC have now to issue warning notices and if necessary take action to remove the registration of a provider and close a service. To clarify, CQC have been asked to develop a Special Measures regime for adult social care by the Secretary of State. That process will begin in autumn 2014 and be done via the Adult Social Care Co-Production group that I am a member of. At present, the in depth details of what Special Measures in adult social care will look like are still to be decided on.

In the meantime, I have my own personal 'wish list' that draws on the experience of poor care that we had in the last 6 months of my dad's life. This list includes:

1) Timely intervention - Often vulnerable people don't have weeks and months to wait for improvements to happen. If the 'care' they are receiving is acutely failing, it could cause serious injury or premature death.

2) Targeted intervention - A Special Measures style intervention should, in my view, directly address particular concerns by signposting to resources that can make an immediate difference to the lives of the people receiving a care service. There are loads of great resources available, and accessing them doesn’t necessarily require a provider to spend a lot of money. We are very fortunate in the UK to have The Social Care Institute for Excellence and Skills for Care alongside many other innovative and highly effective national and local organisations, businesses, charities and community interest companies that can provide guidance, practical resources and be catalysts for change. Indeed, independent of regulation some care providers work with me in a consultancy capacity to evaluate, improve or change aspects of their service, so there are many proactive and forward-thinking providers out there already.

3) Sensitive intervention - It is vital to be mindful that a care home is the home of the people that live there. In my view Special Measures must do everything possible to turn a service around in a timely and targeted way without the people that live there having to find a new care home, unless of course those people want to find new care home. Having to move can be very distressing, and again possibly hasten a person's death is they are particularly frail or have advanced dementia.

4) Public accountability - I hope that, like with hospitals, Special Measures will provide clarity for families about the status of a service. Families aren't stupid - they know when care isn't good enough, but generally they are often too afraid to speak up. They need to see CQC taking firm but fair action that addresses shortcomings if a service isn’t safe, caring, effective, responsive and well-led. As part of that process, I would like to see all providers actively working with families in a renewed effort towards teamwork and inclusivity in the day-to-day life of a care home.

So how are care providers likely to react? In my view, if you are a good care provider you have nothing to fear. If you are a provider who is found to have a service that is delivering sub-standard care but you are prepared to work hard on turning that service around you have nothing to fear. If, however, you are a provider of a sub-standard care service and you are complacent and disinterested in improvement then you are a danger to the people who rely on you (people receiving your care, their families and any good care workers that you employ), and anyone who may come into contact with your service in the future. It is then the role of CQC to take action and it would be indefensible if they didn't.

There is some disquiet that putting a service into Special Measures will mean that the provider cannot maintain their revenue stream if one of the conditions of Special Measures is to prevent the provider from having new admissions to their care home or new clients to their homecare service. This, however, isn't new - there was a period when one of my dad's care homes was closed to new admissions due to safeguarding. In my view this actually helps providers; it enables them to focus on their service and the improvements that are needed without the added responsibility of caring for more people, and it safeguards the public from anyone else coming to harm whilst the service implements improvements.

Is privatising care the reason poor care exists? In my view poor care can occur whether the provider is making a profit, is a not-for-profit or indeed is a public sector organisation. The causes of poor care practices are, more often than not, centred around the culture of an organisation, its leadership and in some cases individual staff teams or members. Can hospital-style Special Measures work in social care? No, because clearly there are significant differences between hospitals and social care, but there are certainly some positive examples of hospitals turning themselves around as a result of being placed into Special Measures.

Can CQC be trusted with this? As is well known, CQC didn't provide us as a family with the support we needed when my father was alive, but arguing about the regulator isn't going to change the fact that they are still the regulator. Working with them to improve social care, celebrating the outstanding examples of care and uncovering inadequate care is the only option in terms of the regulation of UK health and social care services. As I have said in the past, inspection - however rigorous and informed with intelligent monitoring - will still only be a snapshot of a service. Whistleblowing is as vital now as it has ever been, whether you are a person receiving care, a family member or a social care worker.

I believe as a country we owe it to every person who needs social care and their family to ensure that care is the very best it can be. I will always champion that regardless of who is in government and who the regulator is. I feel passionately that we must be the change we want to see, and constantly strive for improvement and the eradication of poor practice.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Caring for carers

For many years I’ve thought of carers as the forgotten millions. As a family we certainly felt forgotten on many occasions during my dad’s 19 years with dementia, both before and during his years in care homes and his spells in hospital, and given what I hear at conferences, events, through my writing, social media and email, little has changed.

There is just one subtle difference though – I feel the voice of carers is becoming louder, more persistent and more difficult to ignore. Slowly but surely there is a movement growing in momentum, spirit and immovability that will, I hope, one day ensure that the needs, rights, knowledge and skill of unpaid carers is recognised and enshrined in the fabric of society.

If anything it amazes me that health and social care have for so long undervalued the role of people who care for a loved one, be they a family member, friend or neighbour, near or far, living with complex needs and long-term conditions or someone older and/or immobile who requires crucial daily living support. There is no archetypal carer – they may be young or older or anywhere in between. They will undoubtedly have a life of their own that they will often indefinitely put on hold. I guarantee the majority will be driven by love and devotion, but exhaustion and frustration will also play a big part in their life. What unites them all, however, is the need for far greater support and recognition.

Support is vital because you simply cannot be a 24/7 carer for what may be an unspecified amount of time before the cracks begin to appear in your own health and wellbeing, your caring suffers and therefore so does the person who you are caring for. When the carer breaks down and then needs care themselves, there is often no one to care for them and indeed no one to step into their caring shoes, meaning effectively two people become highly dependent on society.

Recognition goes hand-in-hand with support, because if a carer is recognised as a carer there is more chance that their needs will be met, hopefully avoiding that crisis situation. Recognition goes further than this though. It is about seeing a carer and the person that they are caring for as a joint entity, rather than seeing the vulnerability of the person needing care and totally ignoring how that vulnerability also makes the carer very vulnerable. Recognition is also about valuing carers – their knowledge of the person that they are caring for is vital for any professional providing healthcare or social care for that person. That knowledge must be fully integrated into the provision of professional care.

How we make this happen in relation to healthcare is part of the new NHS ‘Commitment for Carers’ – an initiative that recognises that the health service can and must do much better when it comes to responding and reacting to carers, their needs and their knowledge. It must be hoped that this ‘Commitment’ will forge a workable, long-term plan that will benefit carers, those that they are caring for, and the professionals who should be partners in that care provision.

Very close to my heart, of course, is how we support those who are caring for a loved one with dementia. Very early on in the focus on dementia, the Dementia Action Alliance (DAA) was born (I am a national member), and from that we now have the DAA Carers Call to Action (CC2A). The aim of the CC2A is to, “Ask the right questions, explore examples of good practice and find solutions to address the needs and rights for family carers of people with dementia.”

The fact that any of these initiatives exist at all is, ultimately, down to carers themselves. Despite being people with exceptionally busy, stressful and hugely demanding lives they have found time to speak to media organisations, effectively used social media to highlight their experiences and, perhaps most powerfully of all, have spoken out at many key events, often supported by fantastic teams from carers’ charities.

In the case of carers of people with dementia, this has often been through Dementia UK’s ‘Uniting Carers’ – a group that I am very proud to be a member of and very sad to see disbanding. Fellow members, alongside people with dementia, blew me away at last year’s Dementia Congress, and this year I was literally moved to tears hearing their often heart-breaking accounts.

Sheila Wainwright’s story in particular was something that a packed Congress hall of people with dementia, carers, health and social care professionals, business people and media representatives, alongside Care and Support Minister Norman Lamb MP, really needed to hear. Recounting her husband’s dementia, and the impact it had on both of their lives, Sheila told of the "Shear daily misery" of their life, how "No one" answered her questions, and that over the years "Many people came and went, and came and went" but there was simply no continuity of support for her or her husband.

Sheila admitted that she was, "'Planning how to end our lives before a call to Admiral Nursing Direct saved my life." Her husband eventually passed away in hospital after an agonising end to his life, with Sheila movingly recalling the actions of a nurse as her husband was finally at rest, "That sprig of flowers put on his chest when he died was one kindness I will never forget."

It can never be acceptable that we wait until someone’s death before we show kindness to their carer who has valiantly stood by their side as, in Sheila’s words, her husband, "Screaming and snarled, pooed in the shower and pushed it down the drain, lost the ability to walk and talk, and went from 13 stone to just 7 stone when he passed away."

Sheila said she felt bereft and bewildered. I had tears in my eyes from the pain in her voice and her story, and I know for certain that I’m not the only person at this year’s Dementia Congress who was similarly emotional. Although Sheila’s husband is at peace, the psychological ramifications of caring for him and all of the struggles that she faced live on two and a half years later. It is for Sheila, and everyone who walks in her shoes, that we MUST ensure that we care for carers.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Paid to care

When you go into any care setting, either as someone needing care or their family, you naturally expect that everyone who is looking after you or your loved one has been given all the skills that they need to provide that care safely, compassionately and confidently. What you might not realise is that aside from those people who you automatically recognise as being professionally trained and accredited (doctors, nurses, occupational therapists, physiotherapists, radiographers etc), those who assist them in providing care aren’t afforded the same professional status.

Although standards have been laid down by the Skills Councils for Health and Social Care, there is no robust system for ensuring that these are met, leaving the training and development of Healthcare Assistants (HCA’s) in hospitals and carers in social care settings (care homes, domiciliary care etc) very much open to interpretation and varying levels of implementation. In addition there is currently no defined path of career progression for those who seek it, and no professional body that offers registration for this huge number of care workers (unlike the RCN for Nurses or the BMA for doctors).

During my father’s time as a hospital inpatient, I would say that the majority of his care was provided by HCA’s. They were the ones charged with checking his vital signs, turning him to prevent pressure sores, changing his incontinence pads, and helping him to wash, eat and drink. Nurses were always on the ward, but clearly not enough of them for the number of high dependency patients, let alone with sufficient time to support their HCA colleagues.

Indeed, such were the tasks undertaken by HCA’s that many visiting relatives actually believed that they were part of the nursing staff. Yet HCA’s, despite the vital work that they do, clearly aren’t valued by our healthcare system. Without the professional standing of their nursing colleagues, HCA’s are effectively a cheap labour source for employers. Many are working on grossly over-stretched hospital wards leading to their duties creeping ever more into the realms of full-blown nursing. In monetary terms it costs far more to employ additional nurses than it does to ask HCA’s to complete some nursing tasks, but this is a dangerous game to play with patient’s health and wellbeing.

The situation is no better in social care, with carers in care homes and domiciliary care again providing vital support to often highly dependent vulnerable people under huge pressure, often inadequately trained or supervised and feeling very undervalued. Whilst some care providers constantly update and evaluate the skills of their workforce, others provide much less effective training for their staff, putting those who are receiving care at huge risk. Training doesn’t need to be complex, degree-style education (see this blog post), it just needs to be logical, natural and above all effective.

How this situation has gone on for so long is a mystery to me. We regulate health and social care services and demand high quality care, and yet that isn’t followed through with a framework that invests in and supports the very frontline staff who are charged with delivering this. I’m not suggesting that training and qualifications are the answer to all of our problems in care, far from it. On many occasions I had to educate both nurses and HCA’s on how to care for my father in aspects such as his swallowing problems, communication difficulties or behavioural issues. I do, however, feel that as patients and relatives we want to know that care provision is considered sufficiently important that it warrants a professional standing within our society, with the relevant standards and rewards in place, adhered to and monitored.

Currently, many HCA’s and carers working in social care earn less per hour than you might get as a cleaner or refuse collector. Whilst the latter two examples are important jobs, surely being in a position where you could potentially influence whether someone suffers pain, harm or ultimately lives or dies as a result of the care you provide is somewhat more important. I also believe that the role of HCA’s and carers in social care settings is one that their more qualified colleagues would also want to carry greater recognition and professional standing.

Nurses and doctors on busy hospital wards would be the first to admit that they would be lost without HCA’s. An effective care team cannot function without people who provide the basic care that is so vital to a patient’s recovery and comfort. Indeed, I would argue that the role of HCA’s goes beyond just providing care, but also moves into the realms of social interaction with patients, and provides vital opportunities to learn more about a patient or to spot changes that could indicate a problem or decline.

Looking at the role of HCA’s in that light, you suddenly realise just how important they are in a care team. So why don’t we train them to a higher, universal standard, give them professional recognition and pay them more money? The simple answer is because it’s cheaper not to. But does it represent good care, or indeed the model of care we want for ourselves or our loved ones? No.

In my opinion, for far too long those who provide frontline care have been marginalised, undervalued and seen as the workhorse of public and private sector health and social care. There has never been a more important time to change this situation if we are truly serious about delivering high quality care across all sectors. I believe most HCA’s and carers in social care would want this, their colleagues would support such a move, and most importantly of all patients and families would know that those looking after them at some of the most difficult and sensitive moments in their life are recognised and valued professionals within our society.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Trouble with the language

How we talk about dementia, and people with dementia, is a thorny issue. It is easy to be accused of being politically correct, or losing sight of the real issues by getting hung up on the language we use to describe them, but whilst I would be the first to admit that there is a fine line between being respectful and pedantic, looking at the way we talk about dementia and people with dementia is important to shaping viewpoints, breaking down stigma and improving dementia care.

That doesn’t mean that I think we should go as far as renaming dementia (see this post on NCD). After all, increased awareness and support for people with cancer didn’t happen because we changed the name, it happened because we changed attitudes and educated society. Dementia is now slowly seeping into the public consciousness, and I don’t think the word itself is a barrier to progress and positivity, but some of the terms associated with dementia are helping to keep the disease in the dark ages.

A snapshot of some of my main bugbears and the reasons I don’t like them are listed below, along with some alternative suggestions. Sadly, all of words I have highlighted here are still regularly used across society, by everyone from media organisations to professionals in health and social care, and even families of people with dementia who don’t understand the disease. Interestingly though, if you read the work of people who are living with dementia and documenting their journey, you won’t see them choosing these descriptions for themselves. Food for thought I think!

Senile is a grossly outdated word that should be abolished from our language.

No one with any ounce of modern thinking uses the term ‘senile dementia’ anymore. It is exceptionally negative, implies that the person is worthless, without any quality of life and unable to make any contribution to society. If anyone had described my father as being senile at any stage of his dementia I would have been outraged.

Senile is also a very age-related term, therefore reinforcing the misconception that dementia is a disease of old age, when it can affect people of all ages, even children, although those cases are rare.

Attach the word ‘senile’ to dementia and it becomes hugely stigmatising, negative and totally inappropriate for the modern understanding of dementia and the care people with it should be receiving. Thankfully, the widespread use of ‘senile’ has been eradicated, and in my opinion any references to it now are archaic.

Service user is a common term in social care, even though turning care into a ‘service’ and a person into a ‘user’ is a concept very far removed from what most families would want for their loved one.

We were completely against this description in relation to my father since it implied a production line approach to running a care home. An establishment where numerous people from different backgrounds live and work together, hopefully in relative harmony, is surely a community, therefore the model of referring to everyone within that building as ‘community members’ brings a sense of warmth, belonging and engenders respect and dignity. A great example of this is the Healthy Living Club @ Lingham Court (http://www.healthylivingclub.org.uk/). People with dementia, their carers and friends are members in this self-directed community group – a refreshing approach that many organisations could learn from.

Client is another widely used word to describe people living in a care home, receiving care in their own home, or taking part in activities run by day centres or community groups.

However, for me it is associated with a transaction approach. You pay money and receive something in return; a bit like visiting a solicitor. Whilst technically this is what happens in many cases, it does nothing to reflect the need for personalisation or compassion that is so vital in dementia care. Again, for ‘client’ how about ‘member’ – it implies teamwork, puts those giving and receiving care on the same level and underpins the need to understand each other.

Toileting is another term that I loathe.

People with dementia should be assisted to use toilet facilities if they need help, but not have such an important aspect of daily life made to sound like a regimented and degrading system. As an example of how strongly I feel about this term, when we were looking for a care home for my father we visited one where the nurse in charge openly told us that they had ‘Toileting Times’ (as I wrote about here). Needless to say dad never set foot in that home, and any other care home adopting such an approach should radically rethink – how would their staff feel if they were ‘toileted’?

Sufferers is a term that has long been used in relation to people with dementia, it appears regularly across the media and infuriates many, myself included, who are campaigning for a better understanding of dementia.

Amongst those who dislike this term the most are people who are living with dementia and sharing their story to help the world understand that they are not looking for sympathy or pity – something that the term ‘sufferer’ implies. They want to be seen as a person in their own right, not as a disease.

I’m all in favour of the drive to bring positivity to dementia care, provide hope and break down stigma. Describing people as ‘living with dementia’ rather than ‘suffering from dementia’ is designed to enforce the point that you can live well with dementia. That is not to imply that there aren’t huge challenges – I would be the first to admit that my father often suffered greatly as a result of his dementia, and indeed the other illnesses that eventually went with it, like pneumonia, UTI’s etc.

However, over the course of his journey with dementia, dad still had far more good days than bad ones. Days when we smiled, laughed, sang, ate and explored the simple things in life together. Days of complete silence and yet pure serenity and calm. Days of endless chatter that either of us really understood but didn’t need to because we had each other’s company.

In all of those moments, my dad was living with dementia and we were living with him, making the best of things and not thinking about suffering. The pleasure we had in each other’s company is something I will always miss.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Sense and simplicity

One of the many positive things to come out of the increase in dementia awareness is the focus on how we provide the best possible care for people living with dementia. The importance of training for everyone involved in dementia care has never been higher on the agenda, and there is a huge desire to equip people from all backgrounds with the skills and knowledge needed to enhance quality of life for everyone with dementia, but what does good dementia care training really involve?

So many people ask my advice on dementia care, not just from a personal standpoint but also from a professional and business point of view. My answer is always the same – keep it simple. I am not a fan of complex theories, extravagant ideas or novel concepts – everything I have ever seen work best for my father and numerous others living with dementia is simple, down-to-earth, logical care that focuses on the individual, their personality, passions and interests, keeping their past constantly in mind, living in their present, and giving them the best possible future.

Underpin that with strong bonds between the carer and the person with dementia, deliver that care with compassion, empathy, dignity and respect, and voilà – you have good dementia care. Nothing fancy, nothing ground-breaking, just the implementation of the obvious, or maybe it is only obvious to me because my father had dementia for so many years and during that time I saw some of the very best, and worst, dementia care.

Those who are living, or have lived, through a loved one’s dementia journey are often the best educators. We notice what others ignore, and having felt the whole range of emotions - and in my case seen dementia from the very beginning, through numerous stages and symptoms over many years to those final days of end-of-life care - you develop an acute sense of how to nurture someone through their dementia journey.

That feeling for dementia is what really needs to be communicated through modern-day dementia training – teaching the mechanical nuts and bolts of care is no longer enough. What does not need to happen, however, is for it to be packaged up in jargon. Carers do not need to be bombarded with new-fangled language to identify a simple aspect of good care. For example, at a recent event I spent the best part of half an hour listening to a very animated presentation on what amounted to continuity in care, where the people presenting the session managed to make the idea of having the same carer regularly looking after a resident that they had formed a bond with sound ground-breaking. Yet over 8 years ago, as my father was settling into his first nursing home, he developed a friendship with a particular carer who was then made his keyworker and remained as such until that carer left, just a few weeks before dad passed away. Not so much revolutionary as the simple application of observation and sense.

I sometimes wonder if that long-standing joke about common sense – that sense is in fact no longer common – actually has a lot of truth in its jest. I suspect that in this drive to be technological and futuristic many people feel that you can only successfully convey a message if you package it up to such an extent that you ask your audience to play a never ending game of pass the parcel. Where care is concerned, however, front-line staff simply do not have the time to unravel ideas – you need what you are being asked to do to be logical, natural and above all else, effective.

Caring for people with dementia can be a very rewarding job. When you understand how dementia can affect a person, why they do what they do and how you can make every interaction with them meaningful for both of you - whether you are passing their room, feeding them a meal, giving them a bath or playing a card game - work becomes pleasurable, the giving and receiving of care happens in an atmosphere of friendship and mutual trust, and a care home becomes a loving community of like-minded people all working towards common goals.

My advice to carers? I cannot stress enough the need to personalise everything that you do for a person with dementia, make it compassionate, and be dedicated in your application. Do this and you will not only serve the people who depend on you well, you will also have the satisfaction of knowing that you have wrapped up the life of someone vulnerable in a bespoke security blanket that brings with it warmth, protection and love.

It is not a one-way street, however. The best, most committed and caring staff can be worn down in hospitals, care homes or by care companies that do not appreciate the need to allow their staff to have the time to work effectively. Good care is never rushed care. Teamwork should involve everyone in looking after a person with dementia, from the person themselves and their family to every staff member. An inclusive care home, where everyone feels valued, whether they are a staff member, a person with dementia or a visitor, is a happy home. Finally, for any employer looking to give their staff the most effective training in dementia, remember those guiding principles of sense and simplicity. When both are commonplace everyone is nurtured and flourishes.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook