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Wednesday, 29 May 2013

What is dementia?

Reflecting after my daily blogging for UK Dementia Awareness Week 2013, and reviewing all of the coverage given to this campaign, it has struck me that whilst it has succeeded in getting more people talking about dementia, many of those who have embraced it are still searching for information, and that’s to say nothing of the millions of people who the campaign won’t have reached.

Many enquires I’ve had have focused on how to spot dementia in a loved one. Ask most people what dementia is and they will probably say memory problems (that I wrote about here), but it is often as much about behaviours and actions as it is about memory, and in some forms of dementia, memory problems are not a common symptom. It must also be remembered that many symptoms associated with dementia are also indicators for other illnesses and conditions, which must be excluded before an accurate diagnosis of dementia can be made.

Looking at the whole person is as important when we suspect dementia as it is at every stage of someone’s life with dementia. For example, your 80-year-old grandmother who forgets where she puts her keys occasionally but is otherwise looking after herself, and leading as active a life as possible, isn’t about to need 24/7 dementia nursing. She just forgets where she puts her keys sometimes. We can all do that regardless of our age.

I would say that gut instinct has a lot to do with understanding what is, and what isn’t, dementia. Looking back we knew that my dad was experiencing huge problems during the 10 years he went without a diagnosis of dementia, we just didn’t know that they were part of a long-term, terminal disease. Dad’s problems affected every area of his life, from his diet (which went from being balanced and healthy to very unhealthy and mixed up), to him not cleaning the house, not changing bedding, not washing regularly, not changing his clothes, and not caring about his appearance.

Whilst this was partly through forgetting, these were also things he expressed no interest in doing and had to be gently cajoled into. He would keep things like food and household items in unusual and unsuitable places. He became paranoid about security. He would go out unexpectedly and unprepared. He became reckless with money and failed to pay bills. He hallucinated and developed obsessions with people on television. He would pull out the phone line because he didn’t like the phone ringing. He would sit with the curtains drawn on a bright sunny day, and he stopped doing his garden (that he had always loved). The list is endless.

In my dad’s case these were all issues that he developed over a long period of time, that became progressively more severe, and all impacted directly on his health, wellbeing and quality of life. They were never trivial, occasional or reversible. Even when he was admitted to hospital, he very nearly ended up on the local railway line having got out of the ward and walked there in his pyjamas. Thankfully he was discovered by an off-duty nurse before he could have had a terrible accident.

Given that there are over 100 forms of dementia, you can imagine the plethora of symptoms, and for each particular form of dementia, each person can exhibit it differently. For example, I have met many people with vascular dementia, the form of dementia that my dad had, and I can honestly say that each person was very different in their presentation with the disease. Why? Because we are all unique, and dementia doesn’t change that. There is a reason for the saying, “When you’ve met one person with dementia, you’ve met one person with dementia.”

That is not to say that there aren’t some common themes, many of which are covered by the descriptions I’ve given of how my dad’s dementia manifested itself. I cannot tell you exactly what dementia may look like in someone that you know, but you may notice persistent changes in that person’s ability to:

  • Maintain their personal care (their appearance, hygiene, co-ordination of clothes etc).
  • Sequence tasks (like getting dressed in the right order, or making a drink correctly).
  • Operate simple household items or learn how to use new ones.
  • Losing, hiding or Put things away in their correct place (for example they may put their slippers in the fridge and their milk by the bed).
  • Maintain their diary (not attending appointments, failing to go to social events that they used to enjoy).
  • Maintain their financial/legal affairs (shopping, paying bills etc).
  • Orientate themselves (getting lost in otherwise familiar places, including at home. This can lead to wetting or soiling themselves if they cannot remember where the toilet is).
  • Communicate verbally (ie repetition).
  • Speak in a familiar language (reverting to a native language that they remember from childhood, or using foul/abusive language that they never previously uttered).
  • Regulate their speech or behaviour (for example going out not fully dressed or speaking inappropriately to strangers).
  • Read or write (losing concentration, misspelling or incoherent writing).

Your loved one may also experience:

  • Changes in appetite, food preferences or desire to eat/drink.
  • Seeing or hearing things and paranoia (perhaps accusing you or someone else of stealing).
  • Excessive walking (going out unprepared - perhaps not properly dressed - getting lost or looking for a place that they remember from many years ago).
  • Being disorientated in time (for example wanting to start their washing machine in the middle of the night), or living in a different reality (possibly believing  that they are in a different era or location).
  • Problems recognising faces that should be familiar.
  • Losing, hiding or hoarding objects or items (that belong to the person, or someone else)
  • An increasing need for reassurance (someone who was previously independent becoming clingy or losing confidence), or a need to be constantly reminded about things.
  • Altered sleeping patterns (sleeping more and/or at unusual times, or sleeping a lot less, often waking in the middle of the night or experiencing nightmares/dreams that they find troubling).
  • Changes in character, mood, emotions or personality (examples include aggression, anxiety, tearfulness or withdrawal).
  • The classic short-term memory problems that are so associated with most people’s understanding of dementia (long-term memory is often unaffected).
This list is by no means exhaustive, but it should give you an idea of some of the classic symptoms or situations that, in combination, may suggest your loved one is developing a form of dementia. As the disease progresses all of these symptoms would potentially become more severe, with increasing loss of functioning and communication. You may also notice other issues developing, like incontinence or swallowing problems.  If you are concerned, I wrote advice here on how to have a conversation about dementia with your loved one.

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886


PLEASE NOTE: THIS BLOG IS NOT INTENDED TO GIVE MEDICAL ADVICE. PLEASE SEE YOUR DOCTOR IF YOU ARE CONCERNED ABOUT DEMENTIA.

Saturday, 25 May 2013

Let's talk about dementia - Silence

Welcome to the seventh of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 7 - Take your chance to talk

I love talking about dementia, talking with people who have dementia or who care for someone with dementia – there is so much richness in each person’s experience that if you could bottle it, it would be priceless.

We often take the opportunity to talk to each other for granted, until it is replaced with silence.  I miss talking (often total rubbish!) to my dad. Now our ‘conversations’ are more one-way than they ever were – me recounting my news, asking for his guidance, wishing for his presence and always telling him I love him.

The silence we share now is not as beautiful as it was when he was here. When I could still hold his hands, kiss his cheek, and do all the little things that made him feel comfortable and loved. Now I long for the chance to have him in front of me and to be able to talk to his face again.

Never let the chance to talk to someone you love pass you by, even if you find the conversation difficult. They might want to talk about dementia but not know how to begin that discussion. They might have dementia and be feeling lonely and ignored. But whatever is said, be glad you can say it, hear it, and share those moments – they are what makes life, in all its guises, so unique and special.


Until next time...

Beth x






You can follow me on Twitter: @bethyb1886
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Friday, 24 May 2013

Let's talk about dementia - Love

Welcome to the sixth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 6 - The power of love

So many aspects of living with dementia are highly individual and personal, but one element, vital to all life, that I believe dementia never touches is the need to love and be loved.

Who doesn’t want to be surrounded by love, and when we are at our lowest it can be like life-support for the soul. To me, love is about what you do more than what you say, but that doesn’t mean you never tell someone you love them. Every time I saw my dad I told him I loved him. Sometimes he didn’t react, other times he said it back, smiled or motioned to give me a kiss. Indeed my last words to him were about how much I loved him.

Whenever I have listened to people in the earlier stages of dementia talk about their life, one universal theme has been how much love they have for those who are supporting and caring for them. Brimming with pride, modesty and huge love themselves, they readily recognise, acknowledge and show huge gratitude to those whose love helps them to get through each day.

When dementia advances, and maybe the words dry up, unspoken love takes their place. A look, a squeeze of the hand or a peck on the cheek that says you mean the world to me, thank you for everything.

Next post on 25 May 2013.
Until then...
Beth x






You can follow me on Twitter: @bethyb1886

Thursday, 23 May 2013

Let's talk about dementia - Humour

Welcome to the fifth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 5 - Better to laugh than cry

I have encountered many amazing people with dementia who incorporate humour into living with the disease. That’s not to say that they find the distasteful jokes about dementia funny. They don’t, and those jokes really aren’t funny to anyone who has personal experience of dementia, but humour that lightens the load for the people with the heaviest burdens is a priceless gift.

Dementia’s naughty side can produce words from lips that had never previously uttered such language. Those moments of confusion, misunderstanding or using the ‘wrong’ words can bring smiles and laughter, both for the person with dementia and those who they are interacting with.

Finding humour is an important element in helping someone to live well with dementia, and for the person themselves it is often far better to laugh about something that they are finding challenging rather than getting angry. Making light of difficult situations can remove those feelings of inadequacy or guilt at not being able to do something.

Laughter, as they say, is a great medicine, so take those opportunities to talk, joke, smile and laugh together to find the happiness and wellbeing that most people never associate with dementia.
 

Next post on 24 May 2013.
Until then...

Beth x







 

You can follow me on Twitter: @bethyb1886

Wednesday, 22 May 2013

Let's talk about dementia - Frustrations

Welcome to the fourth of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 4 - The frustrations of living with dementia

Living with dementia, especially when you have awareness of what is happening to you, is inherently a very frustrating experience.

You want to get on and do things, say things, go to places and meet people. Yet your brain can’t keep up, bits of the jigsaw of daily living are missing, and you feel limited by being unable to remember the how, what or why of things you previously accomplished without hesitation.

It's a heavy burden, but it would be a lot easier to bear if it didn’t come with the most irritating aspect of living with dementia: dealing with people who just don’t understand. The shop assistant or fellow customer who is impatient for you to remember your pin number, or not hesitate trying to find your change. The passer by who won't stop to help you find your way, or the person on the phone from the utility company who is demanding information that you cannot recall.

Talking to a person who has dementia should be about dialogue on their terms, not on yours. It should never be about adding to their frustrations; it should be a conversation that brings calm reassurance, comfort and sees them as a person, not a disease.

Next post on 23 May 2013.
Until then...


Beth x







You can follow me on Twitter: @bethyb1886
   

Tuesday, 21 May 2013

Let's talk about dementia - Surprises

Welcome to the third of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 3 - Prepare to be surprised

Ask most people what they think living with dementia would be like, and they assume it’s a life of inability and dependence. Those of us who know otherwise just want to scream, “People with dementia can still do things!”

More importantly, people with dementia still WANT to do things. Stepping in and doing everything for them, without stopping to consider, asking or trying to see what they can do themselves removes their independence, and is actually likely to make their deterioration with dementia more rapid.

An example of this is my dad in the later stages of his dementia. To a casual observer he was incapable of doing anything. Most days he needed to be helped to eat, but some days he could, when encouraged and not rushed, pick up the spoon and feed himself. You might think, what’s the point? Just do it for him. But by doing it himself he proved that not only did he have the ability and dexterity, but most importantly of all, he had the desire to fuel his body to keep going.

So next time you are with someone who has dementia, give them the opportunity to surprise you. Allow them to experience achievement, and when you talk to them, let them know the joy of being praised.

Next post on 22 May 2013.
Until then...


Beth x





You can follow me on Twitter: @bethyb1886
 
 
 

Monday, 20 May 2013

Let's talk about dementia - Questions and answers

Welcome to the second of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 2 - Asking questions, finding answers

Developing dementia often brings many questions. What is dementia? Why me? What does the future hold? How will I/we cope? HELP!!!

Asking questions is natural. Finding the answers is often much harder. Sometimes there isn’t an answer. Sometimes you have to accept that you will never really understand something, which is one of the hardest aspects of living with dementia. Some of the finest advice I was given, and have passed on many times, is to ‘live in the moment’ with dementia – whether you are the person who has developed it or those closest to them.

19 years with my dad’s dementia didn’t answer all of my questions. I found that the questions that represented my deepest raw anger and grief didn’t have a definitive answer, and still don’t. But I was lucky - for all the questions I could articulate, and issues I could explore with family and friends, think of all the questions that my dad must have had that in the end he couldn’t find the words for.

Talking about dementia means letting rip with our questions as often as we need to and, in the case of someone with dementia, whilst they are able to… and when you think you don’t have the answer, remember, you can always just live in the moment.

Next post on 21 May 2013.
Until then...

Beth x



 



You can follow me on Twitter: @bethyb1886
 
 
 

Sunday, 19 May 2013

Let's talk about dementia - Truth

Welcome to the first of my seven ‘mini’ blogs for UK Dementia Awareness Week 2013. They are all themed around talking about dementia, exploring different aspects of conversation from the point of view of people who are living with dementia, carers and families.

Day 1 - The truth about dementia

There are so many misconceptions about dementia. It’s a disease of the old. Developing dementia means your life is over. People with dementia are worthless to society. People with dementia want sympathy.

I believe that we do everyone living with dementia (over 800,000 people in the UK alone) a great disservice every time we talk about dementia inaccurately. Every time we assume it only affects people in their 70’s, 80’s and 90’s we ignore the people in their 40’s, 50’s and 60’s with dementia (and those even younger). Every time we use language like ‘sufferers’ and ‘victims’ we disable people with dementia. Every time we think that the answer to dementia is to lock people away and ignore them. Every time we offer patronising sympathy rather than positive support.

The truth about dementia is that it’s the greatest mixed bag of experiences and emotions that you will probably ever encounter, whether you are the person living with it or their family, friends, neighbours, work colleagues or old school mates. When someone develops dementia it affects everyone in the network around them, a network that has built up over their lifetime, however long or short that has been.

More people than ever before now know someone with dementia, love someone with dementia and want the best for that person. So let’s talk about dementia. Together we have a powerful voice. Alone we are not always heard.

Next post on 20 May 2013.
Until then...

Beth x





 

You can follow me on Twitter: @bethyb1886
 
 
 

Wednesday, 15 May 2013

Power to the people

If you are a family carer you will know only too well the emotional, physical and mental toll that caring can take on even the fittest, healthiest and most positive people. The very nature of caring means it is relentless, affects every area of your life - often meaning that relationships, careers and socialising are put on indefinite hold – and can amount to a constant battle just to survive.

As a result, many carers are left feeling ignored, marginalised and painfully isolated. Package all of this up and there is no doubt that carers are at a huge risk of depression, something finally acknowledged by the Royal Collage of General Practitioners who have highlighted this issue and called for routine depression screening for carers. Full credit to the RCGP for their efforts, and it is certainly something that needs tackling, but sadly I don’t feel that primary care, or indeed the healthcare system in general, is either equipped or supported to make real inroads into providing carers with the help that they really need.

My concern is that by pinpointing depression, something that we have known drug treatments for, it will be viewed that a prescription is the solution, simply because that's an easy option. We don’t have a pill to combat isolation or provide support - only extensive investment into services, community initiatives and ultimately cultural change can do that, and all of these elements are no closer to being given the priority and real backing that they need.

Giving people a prescription (that isn’t without side-effects) does nothing to tackle the causes of depression, or address the problems carers are experiencing that put them under such huge strain. In this regard, it is much like our approach to tackling depression amongst one of the largest groups who rely on family carers – people living with dementia.

Depression is seen as a major symptom in dementia, even though actually diagnosing it with clinical accuracy is likely to become extremely difficult as dementia advances. In my father’s case, his diagnosis of depression amounted to an assumption that as he had dementia ‘he must be depressed’ and medication was prescribed (as I wrote about here). Quite when drugs became sweeties to be dolled out to any vaguely needy recipient is anyone’s guess, but needless to say I wasn’t happy about it.

My father had good days and bad days, much like anyone with dementia, and indeed anyone without dementia! Catch him on a bad day and yes, you might assume he was depressed. In which case it is far easier to give him a pill than it is to look at the causes of his suspected depression and ways in which his mood might be lifted. To do that you would need to put yourself into his shoes which takes time, patience, understanding, compassion and, in the case of professionals, money.

Thus we are back to that oh so familiar tale, lack of resources. It seems that the depression people with dementia may have, and the depression that their carers, and indeed carers generally, are potentially more likely to have are both linked to the need for a skilled and equipped support network that can provide the REAL relief that is needed.

I would venture to suggest that person-centred care (as I wrote about here) is the solution to much of the depression and withdrawal that people with dementia can experience. Find something that they love and enjoy and you will transform their quality of life. Don’t ‘do’ things to them – share experiences with them. As a family we combatted any depression my father felt by spending time with him, enjoying the things that made him happiest and embracing him as a person, rather than looking at his dementia as some sort of barrier preventing quality of life, or a set of symptoms that needed to be medicated against.

Applying the same person-centred principles to supporting carers is something that is on few agendas, but it is vital that a compassionate society delivers this. A pill for depression isn’t the answer, any more than ill-thought-out respite options are, or stigmatised interference that isn’t welcome. The only way to truly alleviate the pressures carers feel is to listen to them. Understand their individual needs and find holistic ways to support them and their family. You cannot make assumptions about what people feel, need or want. Most importantly of all, you cannot have a tick-box exercise to determine what is best for them, only the person themselves is likely to know that.

Failing to take into account the differences between each person is a sure-fire way to make their life even more difficult, whilst also wasting what few resources are available. It may not be popular to give power back to patients and carers, but it is the only way we will ever truly tackle the problems that they are experiencing, including depression.

Until next time...
Beth x




 

You can follow me on Twitter: @bethyb1886

Wednesday, 8 May 2013

Hydrated and happy

Dehydration is one of the biggest challenges facing anyone caring for someone who is older or living with dementia. Many older people are known to be chronically short of fluid in their bodies, leading to urinary tract infections and many other illnesses which can result in life-threatening situations that require urgent hospital treatment and intravenous fluids.

Good levels of hydration are vital to remain healthy and alert. Without them we can get confused and unresponsive, two symptoms of dementia, and also two reasons why it may be assumed that someone has dementia even when all they need is to increase their fluid intake. Understandably, in someone who is already known to have dementia, dehydration can make their dementia much worse. So how can you ensure that the person you are caring for remains hydrated and happy?

First of all consider the sort of drinks being offered. Have you tasted them personally? Are they pleasant? It may seem obvious, but it’s easy to ignore the fact that if what we are offering someone doesn’t taste nice it is unlikely to be welcomed. When a person has dementia they may not be able to articulate their dislike for something, so they will just leave it or spit it out, causing immense frustration for them and their carer(s).

Many care providers are hooked on giving their residents squash – water flavoured with concentrated and often additive-packed so-called ‘fruit’. This is about as far from real fruit juice as you can get – it is synthetic, can be metallic tasting and is full of preservatives that should be avoided. I certainly wouldn’t want to drink it and we banned squash from being given to my dad (as I wrote about here), favouring real fruit smoothies that were a perfect consistency and a delicious taste.

It is also important to consider how someone has always liked their drinks served. Are their long-standing personal preferences for milk, sugar or other additions being met in their hot drinks? Are they the right strength, and if they have always liked a particular brand, is that what you are making for them? Are their cold drinks the right flavour and style of drink?

Also think about the temperature of every beverage you serve and be mindful of seasonal preferences – not everyone wants a hot drink on a warm summer’s day.  If the person is able to drink independently, make sure the cup, mug or glass is something that they can pick up easily – assess the weight, style of handle and possibility of spillage. Finally, is the receptacle reflective of their personal choice? I once knew a lady who had spent the previous 70+ years of her life drinking her tea only from a cup and saucer. When carers started giving her drinks in beakers or mugs she simply refused to pick them up.

If you’ve covered all of these permutations and drinks are still not being welcomed, it is worth considering if someone’s preferences have changed. If they are unable to articulate how they feel, you may never know if they are looking for something different. Try alternative tastes and styles of drinks, including things that they may never have had before or that feature stronger flavours (taste buds can begin to fail as we get older).

Also think about how food can contribute to hydration. For example fruit and vegetables often have a high water content, while items like dry potato, al dente pasta or rice could sap fluid levels. Compensate for this by creating sauced based meals and ensuring that what you are serving is sufficiently moist (ie creamy mash rather than dry, lumpy mash and pasta that is served with a moist sauce).

Try things like ice creams and yogurt (being mindful of the phlegm-producing effect of dairy products that I wrote about here), sorbets, jelly or ice lollies. All of these have a high fluid element and can be the sort of ‘treats’ that might tempt someone when a drink in a glass or mug won’t. Cold products can also have a numbing effect on the mouth and throat, which helps some people who are scared of the feeling of food or drinks in their mouth.

Other contributing factors to dehydration can be the development or progression of a swallowing problem (that I wrote about here), dental problems, and symptoms of advanced dementia like being unable to recognise the link between the drink in front of you and the need to pick it up and swallow the contents. There may be muscle weakness, pain in joints or even bruising that could make it uncomfortable for someone to pick up a drink, particularly a heavy one. There may also be fear attached to drinking – for example being worried something may be too hot or cold, or that it could be spilt. Drinks may also need thickening if someone has a swallowing problem, but this can have mixed success depending on the beverage and can (despite what manufacturers say) change the taste of the drink.

When someone has advanced dementia, and especially if they develop a swallowing problem, the only solution to keeping them hydrated could be spooning or syringing drinks. In my father’s case, spooning was very successful. Thickened drinks, slowly spooned, allowing him time to swallow between each spoonful worked very well for a long period. Some people prefer syringing, but this must be done slowly since a sudden injection of fluid into the mouth can be startling, unpleasant and potentially lead to aspiration.

Ultimately, the key to keeping someone hydrated can often be trial and error, creativity and perseverance. Your role in helping them to prevent dehydration is one of the most valuable and rewarding things you can do, and most importantly of all it is lifesaving.

Until next time...
Beth x







You can follow me on Twitter: @bethyb1886

Wednesday, 1 May 2013

We are all individuals

Of all the buzz words and phrases around in health and social care at the moment, ‘person-centred care’ is arguably one of the most important. It might sound like a cross between trendy language and clich├ęd ideas, but there is a huge amount of value and importance in what person-centred care represents, and it is fast becoming an approach that cannot be ignored by anyone involved in health and social care.

The essence of person-centred care is to treat each person as just that, a person. Not as an illness, a collection of symptoms, a problem that needs solving or as someone who is seen as having no ability. Person-centred care is about understanding each person’s unique qualities, interests, aspirations, preferences, abilities and needs and acting on that understanding in everything that you help that person with.

It may sound obvious, like perfect common sense, but for a long time a one-size-fits-all model of ‘care’ has been the norm, to the detriment of those on the receiving end of it. For anyone living with any condition, illness or disease, the holistic approach offered by person-centred care is a hugely positive step, but for someone who is living with dementia I would go as far as to say that person-centred care is a vital form of therapeutic treatment that can alleviate symptoms and promote quality of life. It can also make a massive difference to the life of a carer, because true person-centred care for your loved one will provide you with greater support and peace of mind.

I would like to think that person-centred care is about as far from the dreaded tick box culture as we can get, even if delivery of it can still be turned into a hugely paperwork-heavy exercise. Finally moving away from the idea that we can all be herded like sheep, grouped and homogenised, and actually recognising our differences and uniqueness can only be welcomed, providing of course it is accompanied by open-minded acceptance rather than discrimination or segregation.

For me though, the real heart of person-centred care isn’t about what we write down or input into a computer about a person, it’s about our interaction with them. It is easy to record what makes someone who they are, but adjusting how we interact with them is much more difficult. I don’t believe we are naturally conditioned to celebrate individuality, making it far more difficult to begin that process in our professional careers.

From an early age, our education system groups and trains us to follow a curriculum and examination process that is about everyone thinking and acting along the same lines. Person-centred care challenges that and tells us to toss out the textbook because each person has their own rule book, and you won’t have read each one of those at college.

Person-centred care means losing the safety net of treating everyone the same and using your own initiative, instincts, empathy and understanding to connect with that person and appreciate who they really are. Within every professional those qualities will differ, making person-centred care the ultimate unknown quantity. This in turn explains why some professionals and organisations deliver it so well, while others struggle immensely.

From a professional’s point of view, person-centred care can mean supporting someone’s wishes even when you don’t agree with them, helping them to do and achieve things that you might not find interesting or even worthwhile, and working at their pace rather than at yours. It can, however, also provide the greatest satisfaction and fulfilment in your life. Knowing you have cared, supported and enabled someone to be who THEY really are is an achievement unlike any other. 

From the point of view of someone receiving care, it is about taking control, having the security of knowing that you matter, having the peace of mind that you can be supported to live how you want to, and experiencing dignity and respect at all times. Person-centred care should remove worry, promote independence, give hope and positivity, and make each individual feel like the special person that they are.

In essence, none of this involves a direct cost implication so it should be popular with health and social care providers, but in reality delivering person-centred care needs people. Only a dedicated, compassionate, understanding person can provide person-centred care. It can’t be done by a machine, and it requires that most precious commodity of time.

As a result, person-centred care hasn’t been widely implemented. In fact in relation to my father, I would say that from the professionals involved in his care it was sporadic at best. Where paid carers were concerned it was only consistently demonstrated by his keyworker, and overall what made dad’s care person-centred was his family. We put dad at the heart of everything, always caring for him with his wishes, preferences and interests enshrined in what we did. For people without families, however, the story is often very different.

So how do we persuade health and social care providers to abandon models of care that assume we are all the same, and actually recognise our individuality and uniqueness? I believe it comes down to public pressure and understanding of this subject, a sustained drive towards new ways of thinking and working, meaningful training programmes, and championing those who are already implementing person-centred care and seeing the benefits of it.

In a world that is obsessed with evidence-based working, sometimes you cannot quantify the real depth of appreciation and wellbeing that comes from person-centred care. The inner relief, happiness and comfort a person may be feeling cannot always be articulated or measured, but that doesn’t mean we should abandon person-centred care in favour of one-size-fits-all. If you ever doubt the wisdom of providing care that supports someone to be exactly who and what they want to be, ask yourself this: if the roles were reversed, what sort of care would you want?

Until next time...

Beth x







You can follow me on Twitter: @bethyb1886