The private world of incontinence

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at continence.

In June 2013 I wrote a blog entitled ‘An urgent need to understand’, which talked about some of the experiences we’d had with my dad’s incontinence and ways in which a person can be supported to maintain their continence. In that blog I said:

“The devastation that incontinence can cause both the person with it, and potentially a spouse or family member who is caring for them, is immense. The more private a person is the harder it will be felt, which was certainly true for my father, who was incontinent for nine years.” 

Continence, perhaps more than any other issue, is strongly linked to privacy. In my experiences as a mum I know that not long after a child is potty trained they begin to want privacy when going to the toilet. Such privacy soon becomes the norm for the rest of their life, unless incontinence accompanies a progressive health condition like dementia, in which case needing the support of another person, whether they are your own family or a health or care professional, becomes the new norm. Just because it’s the norm, however, doesn’t mean it feels normal or will ever feel normal.

Continence problems are strongly associated with ageing, but certainly don’t exclusively affect older people. Last month marked World Continence Week, with a statistic that bladder weakness alone affects 1 in 3 people and is more common than hayfever.

Continence has come onto my radar many times since I wrote ‘An urgent need to understand’. Professionally this has predominately come through my training and mentoring consultancy work, with one particularly striking example being when homecare staff from one of my consultancy clients came to me to discuss a lady living with dementia who was repeatedly developing bladder infections and soiling herself. 

The infections increased the lady’s confusion, and despite trying to provide optimal support staff said that they felt they were failing this lady every time she got another infection. I encouraged staff to really think about how the support being provided was responding to this lady over the course of each 24-hour period. Care staff often only analyse the time they spend with the people they support, rather than what is happening when they aren’t there.

It transpired that this lady was only using the toilet when staff weren’t present, and would often put off going to the toilet for many hours purely because she was confused about the time care workers would visit and concerned about her privacy (staff learnt that this lady had had a bad experience with a previous care worker during a trip to the toilet).

Many different approaches were taken to resolve this issue, including ensuring the lady had a dementia clock so that she knew what the time was, a personalised schedule that was clear to her for when her care visits were, and a lock on her toilet door (that could be opened from the outside in an emergency).

Simple measures, but alongside staff really understanding this lady’s need for privacy for the first time they proved to be the difference in supporting this lady to use the toilet more regularly, thus reducing the recurrent bladder infections she had and improving her quality of life as she soiled herself less. 

I would always encourage anyone supporting a person who is struggling with continence to think about the bigger picture, considering how the environment and the person’s routines and plans for the day are affecting their continence. If the person’s day-to-day life isn’t supporting them to use the toilet as often as they need to, problems are inevitable.

Continence hasn’t just come onto my radar through my experiences with my dad and my work, however. On a personal level, continence is something that my midwife was really open with me about during my pre and post-natal care when I had our daughter. 

Any lady who’s has a baby will have heard the iconic words, “Do your pelvic floor exercises!” Pelvic floor exercises aren’t just for women who’ve recently had a baby though. I’d argue that they are important throughout all of life, as the stat from World Continence Week ‘Prolapse can affect half of all women over 50’ shows. Although pelvic floor exercises alone won’t cure prolapse, they are often recommended alongside other treatments.

I’ve always felt that preventing incontinence is a great deal easier than treating the physical, mental and emotional effects of incontinence purely because incontinence is about so much more than just wearing a pad. As I said in my ‘An urgent need to understand’ blog:

“Changing our attitudes towards continence, and breaking down the taboo’s associated with going to the toilet, must be a key priority if we are to improve the care provided to everyone who is living with dementia.”

Until next time...

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Life story work – The gift that keeps on giving

One of the loveliest aspects of becoming a parent has been taking our daughter on various trips to meet her extended family. On one such trip we were given a gift, not of a teddy or a baby outfit, but a book with memories of her granddad.

Regular readers of D4Dementia will know that the joy of having our daughter last year was tinged with the sadness that my dad will never meet her. He would have loved being a granddad, and I can only picture in my mind the huge smile and tears of joy and emotion that he would have had as he cuddled her for the first time.

The memory book we were given was something last discussed at my dad's funeral. My cousin promised to look out some photos, and write down memories he knew of from my dad's early life, and I was so touched to find that promise was still remembered over 4 years since we laid my dad to rest.

The book comprises old letters and photographs, alongside my cousin's account of memories from my dad’s childhood and early adulthood. Some details I already knew, but it’s fascinating to read about the places my dad visited, and some of the things he did with his parents and siblings. Dad’s regular routines in his young life, which probably seemed very mundane back then, provide a captivating insight and conjure up pictures in my mind of dad on his motorbike, singing songs around the fire and visiting favourite pubs.

I've written before about the value we had from life story work while my dad was alive, specifically the memory box we made for him. The creation of that box was a wonderful process, displaying it made us very proud, and the discussions sparked by the contents gave joy and pleasure over and over again. It truly was the gift that just kept on giving, and still does to this day, positioned next to my work desk.

For me, that last sentence really gets to the heart of the ‘point’ of life story work. Its value when the person is alive is well documented, but it remains just as valuable, perhaps more so, when the person is no longer with us. Keeping a relative's memory alive, and being able to remember them in happy times, having fun and living their life, gives a very comforting perspective on the loss you feel of your loved one.

The links between life story work and good dementia care are well established. Of particular note is the fact that life story work is hugely important no matter how well you know a person, hence its value for families and professional care staff alike.

If you know a person well, it can help to guide your mutual reminiscence and pride in your loved one’s life and achievements, as well as triggering conversations about favourite sports, music and films etc. If you are a professional who doesn’t know the person so well, life story work is like a window into their world, helping to guide and inform you as you provide care and support for them.

If the person has limited communication skills it enables you to gently prompt conversation. You may also find it beneficial when trying to soothe someone feeling anxious or upset, to lift their mood if they are feeling down, or to bring out the best in the person when they are having a good day and just need a few little prompts to spark off memories they can enjoy.

Life story work is as diverse as the society we live in, and we can all participate - no matter who you are, you have a life story. You might not think it's very exciting, but everyone has something worth sharing and something they can feel proud of. Indeed, one of the best ways to get staff involved in life story work for the people they are supporting is to begin by showcasing their own life stories.

Purely co-incidentally, in my consultancy work with care providers I have various clients who are either embarking upon, or trying to strengthen, life story work within their services at the moment. Different approaches are being utilised, which is precisely what I am encouraging - as in all aspects of dementia care, one-size-fits-all doesn't work.

Templates, guidance and resources are abundant on the internet for anyone looking to begin life story work, but in truth it's not about the format or model you access to help guide yours or someone else's life story work. The most important drivers for creating, maintaining and evolving a life story resource are enthusiasm, inspiration and commitment.

You have to see and believe in the value of life story work or it will simply become a nice 'project' that's started and possibly ended (or abandoned). In reality, life story work is a continuum. The best examples of it are never completed, much like that book we were given about my dad. He is no longer with us to benefit from it himself, but current and future generations can enjoy it and continue to add to it – there are still many blank pages to fill.

Given that this year’s World Alzheimer’s Month - or World Dementia Month as I feel it should be called - is themed around ‘Remember Me’, there seems no more fitting call to action for us all with World Alzheimer’s Day approaching on 21 September than to reflect on the place life story work has in our own world and that of our loves ones. Documenting memories and turning them into vibrant resources that tell their own unique story has a magical quality about it that I can’t put into words – you really just have to try it.

Until next time...

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Terms of endearment – The ‘darling’ debate

A couple of months ago the Care Quality Commission (CQC) released a report detailing an inspection of a care home in Harrogate where the language used by staff when communicating with residents came under the spotlight. Care home staff had been using terms such as “sweetie”, “darling”, “handsome” and “love”, and the inspection team were concerned about these being “demeaning and patronising”.

Since then plenty of people have weighed in with their opinion on the use of terms of endearment in social care settings, and I’ve been fascinated at how polarised viewpoints have been on this issue. Some people feel such terms introduce welcome informality and infer kindness and compassion, whilst others have found them offensive and disrespectful.

Given that my dad spent the last nine years of his life in three different care homes, he and us as his family gathered plenty of experience in the different ways staff addressed dad. These ranged from the formal ‘Mr Britton’ and the less formal use of his forename, all the way through to calling him “uncle”, which was intended by staff as a term of endearment.

I can’t say what dad thought of the different ways in which he was addressed, since he never spoke to me about them or reacted differently depending on how he was addressed. I personally never had a particular issue with any of the ways in which he was addressed, which starkly contrasts with other usage of language that I really did have a massive problem with.

The term “change your nappy” when referring to changing dad’s incontinence pad was amongst the phrases I loathed the most, and something I touched on in my blog post R-E-S-P-E-C-T. This to me was a grossly inappropriate use of language, and interestingly given the largely overseas workforce was a phrase actually used by an English care worker, so it certainly wasn’t a case of inadvertently misunderstanding the meaning.

Ultimately of course, all use of language comes down to what the person being spoken to feels comfortable with. I can’t imagine many older people in a care home would want their incontinence pad to be described as a nappy, but I guess it’s possible that some people MIGHT find that phrase familiar to them and be comfortable with it. I just felt my dad would be extremely offended and it was entirely inappropriate for him.

The same of course is true with terms of endearment, and this was the point so clearly illustrated in the fallout from the CQC report. Whatever someone prefers to be called is what they should be called - individual preference should override any viewpoints staff or indeed inspectors have. But the key point here is choice. 

It’s vital to prominently document how someone likes to be addressed from the moment they enter any type of residential care. This should be known by all staff, including any agency staff from the beginning of their shift, and we should never make assumptions. Shortening forenames isn’t something everyone will like – a gentleman called Jonathan might not want to be called John. The formality of calling someone Mr or Mrs may make them feel uncomfortable… or it may be exactly how they want and expect to be addressed. A person may prefer the use of a middle name, or even prefer a name that isn’t associated with their given name at all.

Then of course there is this tricky area of terms of endearment. In some parts of the UK, especially more northern parts, terms of endearment are commonplace amongst the population and are likely to be heard everywhere from shops to hospitals, with many people finding them reassuring and comforting, like the familiar taste of regional foods or beverages.

But they will never be to everyone’s liking. I’ve been called “love” and “darling” before and not minded, but I wouldn’t appreciate being called “duck” for example. Care providers, no matter how heavy their workload, have to ensure that all individual preferences are catered for and not strayed from, no matter how easy it might be for staff members to revert to what is most familiar to them. In the end, it’s all about person-centred care and that begins from the very first interaction.

Of course staff will never get it right all of the time, that’s human nature and a rare slip of the tongue is forgivable, but it is perhaps worth reflecting on the following. Many people who move into residential care feel they lose a huge amount when they make that move, but to lose your right to be addressed as you would want to be is something no one should ever lose.

Until next time...

You can follow me on Twitter: @bethyb1886

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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...

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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 clichéd 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...

You can follow me on Twitter: @bethyb1886

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A pill for everything?

Modern medicine is a wonderful thing. It has given us cures to illnesses and diseases that previously killed people in their prime. We have surgical procedures and treatments that can alleviate suffering and give humans of all ages a new lease of life, and there have been many medical and scientific pioneers whose work deserves only the highest praise.

Sadly, with these medical advancements has come a desire for pharmaceutical companies to provide a pill for everything. We want to pop something in our mouth, swallow it and for all our problems, pains, issues and illnesses to magically disappear. We now have pills for weight loss. What about a pill to replace exercise? Many drugs that are prescribed are little more than placebos, yet as a society we still demand more.

We can’t understand that antibiotics are utterly useless at making your average sore throat, cough or cold for an otherwise fit and healthy person any better (and could even make them worse). We just want to take something, anything, so that ‘normal’ life can be resumed as soon as possible, but what happens when their isn’t a suitable pill, it doesn’t work or doesn’t even exist?

Drugs for dementia is a thorny issue. First of all, drugs have not been developed for all forms of dementia. Those that have (licenced for use in early-stage Alzheimer’s) are far from universally effective, and it can be impossible to predict who they will work for. Even in the people they do work for they only alleviate symptoms. No pills currently exist to cure any form of dementia.

Despite this, the UK Secretary of State for Health, Jeremy Hunt, seems to believe that early diagnosis of dementia (that I wrote about here) is vital to provide people with the chance of a prescription for one of these dementia drugs since they can, “Help stave off the condition for several years.” The evidence for this, however, is far from conclusive, with some doctors admitting that while they, “Improve cognitive function a bit,” the consensus seems to be that they may only, “Turn the clock back by about six months.”

I have heard and read stories of people who, having been prescribed Donepezil (Aricept), rivastigmine (Exelon), galantamine (Reminyl) or Memantine (Ebixa), have seen huge improvements in their symptoms, which is great for them and their families. Amongst people who I know personally, however, those who have had these drugs have seen little or no improvement, in some cases decline has continued, and having eventually come off the drugs decline has advanced at an alarming rate and resulted in them dying long before they were expected to.

Dementia drugs really aren’t for everyone. Doctors should not be under pressure to prescribe regardless of looking at a person’s individual history, present symptoms and future wishes. I am actually very thankful that my father wasn’t given dementia drugs. It was bad enough that we had battles over the use of antipsychotics (as I wrote about here), and other drugs like statins that I gather he was only put on because, “Every one of his age should be on them,” and antidepressants, “Because everyone with dementia is depressed.” Wherever these gross and inaccurate generalisations come from they have no place in a healthcare system that should be embracing personalisation.

There is precious little patient care involved if a doctor has lost the ability, or autonomy, to prescribe based on what he or she genuinely believes the individual patient actually needs.  Is pressure from pharmaceutical companies causing this approach to our healthcare? Or is it pressure from the government? It is almost certainly about making someone somewhere very rich at the expense of the person who is given these drugs, often at a time of significant vulnerability in their life and by a doctor who they most likely have complete trust in.

To put the effect of common drug treatments into perspective, I currently know of someone in their 50’s, on a cocktail of prescription drugs including antidepressants and sleeping tablets, who myself and others have noticed struggling with significant memory and behavioural problems. Prior to knowing the side-effects of the medication that this person was taking, I seriously wondered if they had the beginnings of early-onset dementia. Long-term, the implications on their brain health from these drugs could mean that sadly I may not always be wrong about that.

For me, the burning question in modern healthcare is what has happened to personal responsibility? Of looking at ourselves, our lifestyles and the choices that we make and changing those rather than expecting a pill to do it all for us. Quick fixes and easy options might be more tempting in the here and now, but what about the future? When all the pills we take stop working, or the side-effects cause long-term damage that more pills can’t fix, what then?

In the case of people with dementia, drug treatments really aren’t the only option. Indeed for many people they aren’t an option at all. There are no quick fixes. In fact ultimately there isn’t a ‘fix’ at all, but what will work for everyone is care that looks at each person as a whole and finds the elements that will help them to live well with dementia. The most effective treatment lies within us, unlocked by those with skill, dedication and compassion, qualities you will never find in a bottle.

Until next time...

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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...

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Design challenge

As our population ages, designing environments that are aesthetically pleasing whilst also offering exceptional functionality is one of the key challenges in helping our older generation to enjoy longevity in happiness and comfort.

Where we live, work or socialise has huge implications on our health and wellbeing throughout our lives. Addressing practical considerations whilst making somewhere appealing to our senses isn’t easy, and as we get older we may have physical or mental health problems that impact upon our daily living, and eventually mean we require residential care. So how do you meet the challenge of designing environments for older people that give them the sanctuary and pleasure that we all seek in life?

On my travels around the UK I have visited care homes of all shapes and sizes, some incredibly smart, others very plain, a few quite run down. I’ve been to care homes steeped in history and tucked away down long driveways in the countryside, and big modern purpose-built homes in the heart of towns with schools and rows of semi-detached houses as neighbours. I’ve seen the sort of luxury environments that come with an equally impressive price-tag, and witnessed expensive ‘innovations’ that are either loved by the older people who are meant to use them or dismissed as a waste of time.

Historical properties that have been turned into care homes can offer a wow factor that makes you feel very grand, but design-wise they don’t always provide the most practical accommodation. What they do teach us, however, is that the opportunity to be surrounded by an old-world feel can be very alluring, particularly in the case of people with dementia for whom older properties can offer familiarity in styles, smells and layouts, combined with endless possibilities for reminiscence, that are hugely beneficial.

More modern homes can come with all kinds of innovative facilities, including nail bars, café’s, shops, cinemas, gyms and wi-fi zones. All well intentioned of course, but I wouldn’t want such facilities to replace encouraging residents to go out into the wider community to experience social interaction, travel and new sensations. Ultimately I also wonder if some of these ‘innovations’ are more for staff and visitors than the residents. I vividly remember back in my days of singing in care homes, doing a gig in a nursing home’s cinema and the staff telling me that the residents never went down there and actually didn’t really like the room.

For me, however, there are some elements to creating a desirable environment for an older person that apply to pretty much any type of property. Top of that list would be bringing the natural world into our buildings. Mother nature has given us wonderful light, beautiful plants, birds, wildlife and even weather that can offer our senses something unique all year round. So for me sun rooms, conservatories and large windows are essential when designing buildings for older people, and of course easy access to outdoor spaces that will provide an even more intimate experience of the natural environment and the chance for some al fresco living.

One day you can be sat in a conservatory snoozing in the warm sunshine, the next day you could be listening to the pitter patter of raindrops. You can get closer to weather you wouldn’t necessarily want to go out in either, like watching snow falling on the roof or icicles forming over the windows. Natural light also gives a wonderful feel-good factor that is priceless for wellbeing. The only caveat with regard to lighting is thinking carefully about how light reflects around a room, and how that can impact upon someone with dementia, as I wrote about here.

Of course artificial lighting will always be necessary, but for me you can make an environment cosier if you replace glaring over-head lights (that feel a bit like a hospital) with subtle side lighting that operates on a dimming system, so it can be adjusted if more or less light is required. There are also some wonderful lighting solutions that mimic daylight. I once visited a care home that had a ‘beach’ room, complete with deck chairs, sand and ‘sunshine’ lighting. Alternatively, you can use the warm and soothing effect of a fire to give a room ambience and a home-from-home feeling – in a safe and secure way of course.

Harnessing the power of the natural world can go beyond just lighting however. I’m a big believer in having plants, especially growing fruits and vegetables, indoors – many older people love gardening and by bringing the garden indoors, you can make that an all-year-round activity. Incorporating a greenhouse into a design for a care home or day centre, as part of the main building not as a standalone in the garden, would also potentially fuel activities in another area that is essential to daily living – the kitchen.

How often when you have house guests does everyone end up congregating in the kitchen? In my family it’s the way it has always been. So for me the place where food and drinks are prepared, cooked and eaten is the hub of any home. Clearly you can’t have industrial-style kitchens accessible to residents in a care home, but you can promote independent living by providing adapted kitchens that enable residents and visitors to make their own drinks or snacks.

Indeed assistive products exist for just about every facet of daily living, from eating to bathing and sleeping, but I would argue that profiling beds and assisted bathrooms are still best delivered as discretely as possible to avoid that dreaded ‘hospital’ feel. I still vividly remember how actively a deputy manager at one of dad’s care homes campaigned to persuade the management to install wet rooms, which when we finally got them proved to be a revelation, particularly for residents who were terrified of being hoisted into a bath. Proof that how buildings are designed and equipped is vital in helping with good care provision.

The environment you live in isn’t just about what you can see either. Heating is essential, but carefully regulated systems that offer gentle warmth rather than blasts of heat are in everyone’s best interests. One care home I visited even had a system for pumping fresh air throughout the property – an excellent idea from a health point of view.

Interestingly, on our own search for a home for my dad (which I wrote about here), the only environmental aspect that carried any real weight with us was location. Given dad’s love of the countryside we could never have considered moving him into a home that was in the middle of a town, which proves that like everything in life personalisation is vital.

Ultimately though, I would give the last word on designing buildings for older people to the generation that we are creating them for. They are the real experts, and with an ageing population I am sure that there would be no shortage of willing respondents.

Until next time...

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My dementia wish list

Welcome to 2013, the beginning of another new year and no doubt another set of targets for the tick box culture in health and social care. 2013 promises to be an important time for dementia, with the need to build on the awareness generated in 2012 and put all of the promising words and rhetoric into action, to bring real and lasting change to the lives of people with dementia now and in the future.

Currently there are over 800,000 people with dementia in the UK, and over 35 million people worldwide. For me the greatest voice in dementia awareness, education, policy and implementation in 2013 must be theirs, their families and carers past and present – people with first-hand experience of what dementia is really like and what is really needed to improve the lives of those who are living with it.

As someone whose dad had dementia for 19 years and who sadly lost him to it in 2012, here is my dementia wish list for 2013:

(In no particular order)

1)      Dignity and respect for all
It costs nothing and must be the foundation of all aspects of dementia care.

2)      Understanding
People with dementia are still people, with thoughts, feelings, emotions and sensitivities. Understanding what living in their world involves is vital to improving their quality of life.

3)      Personalisation
Treat each person as an individual and tailor their care to them. Appreciate their past, support their present and help to make their future the best it can be.

4)      Compassion
Kindness costs nothing and yet changes so much, not just for the person who is being shown compassion but for the person giving it. What is good for people with dementia is good for all of us.

5)      Opportunity and diversity
We all want a sense of achievement and people with dementia are no different. They still want to have the chance to do the things that they love, or try new hobbies and activities, and they should be encouraged and facilitated to do this.

6)      Belief and positivity
There is so much we can do to improve the lives of people with dementia so that this disease is no longer seen as a black hole of nothing, stigma is reduced, and people are less fearful about admitting that they have dementia symptoms and need some extra help.

7)      Fairness and independence
Our modern world of self-service and technology can be baffling for people with dementia. The systems of daily living must be flexible to accommodate people with dementia so that they can remain as independent as possible.

8)      Involvement
Don’t ignore people with dementia, talk about them rather than with them or assume that they have nothing to contribute. Remember the saying ‘Nothing about us without us’.

9)      Embracing experience
Society can be very dismissive of older people, especially those with dementia, and the contribution that they can make to their communities. As a result many older people are made to feel that they are an unwanted burden. Yet they are a great asset to their communities and can teach us so much – it is time to listen and learn.

10)   Action, not just words
So much was said about dementia in 2012. Indeed the disease has never had such a high profile. This must not just be a short-lived ‘trendy’ topic to dip in and out of however. The problems people with dementia have within the health and social care systems and wider society are reflective of the issues troubling many others. Sustainable long-term solutions to issues ranging from social care funding to care in hospitals, standards in care homes to supporting people within their own homes, diagnosis to end-of-life care are all desperately needed and long overdue.

Until next time...

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