Wednesday 27 March 2013

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Senile is a grossly outdated word that should be abolished from our language.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

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 20 March 2013

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, cafĂ©’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...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 13 March 2013

Another world

As anyone with experience of dementia will know, it is a disease that plays tricks with the mind. Sometimes those tricks can be fairly innocuous moments where clarity of thought is absent. They can be mild and pass almost as quickly as they came, but for many people, my father included, they can come to define life during a particular phase of their dementia.

As a carer, developing an appreciation of and a strategy for helping with the effects of your loved one’s dreams, hallucinations, imaginings and other - almost movie-script-like - beliefs and visions isn’t easy. Short of setting up camp in the mind of someone with dementia, seeing what they see, hearing what they hear, and trying to make sense of it all from the point of view of someone with a brain that is working less than perfectly, I don’t think any of us looking from the outside in will ever truly grasp what dementia can make you see, hear or believe.

In my dad’s case, elements of reality were twisted into fantasy, leading to a bizarre period of a few years where he increasingly lived in a world that made absolutely no sense to us. We dubbed this 'eccentricity' at the time – only later learning that it was actually the workings of vascular dementia.

Dad started living in a world where he believed that he had formed ‘friendships’ or ‘feuds’ with certain people on TV. He never met them or contacted them, he just believed that he had a personal relationship with them that was, in his mind, either positive or negative. From there he progressed to believing that people in TV programmes were sitting in his lounge, and that what they were acting was really happening in his home. In the end we couldn’t even sit down in certain seats because ‘someone’ was already sitting there. He would put out food and drinks for these ‘people’ and we would be forbidden from touching it.

For dad, his dementia almost fed off of the TV – the people, scenes and actions were like fuel to his damaged brain, playing all kinds of tricks on him. I would be the first to admit that some of these tricks seemed to give him happiness and purpose, but others were much darker and more sinister, disturbing his equilibrium, his sense of worth, his understanding about where he was, who he was with and how his neighbours were behaving, and in the end it affected his ability to sleep, eat or even leave the house.

Of course, since we knew nothing about dementia, least of all that he had it, we fell into the classic trap of trying to reason with him. We told him countless times that what he believed wasn’t true. We would attempt to demonstrate that it wasn’t true, that it was all just in his imagination, often leading to arguments. We would clear away the food and drinks he put out for these ‘people’, which only made him more upset and frustrated. In his mind he couldn’t understand why we weren’t making a meal for, or conversation with, his room full of ‘guests’.

These were the sort of ‘guests’ that never left however. Week after week, month after month, their presence only got stronger. It was a bewildering, frustrating and ultimately extremely strange period in all our lives. Looking back now, I can see so many occasions when we went wrong, when we could have handled situations differently, but then of course hindsight is a wonderful thing.

So how do you avoid the mistakes we made and help your loved one through what they are experiencing? First of all look around their home: TV screens and mirrors are commonplace and entirely innocuous in most homes, but when someone is living with dementia they can become the source of much angst. Think about lighting (both artificial and natural sunshine) - the way it reflects off of objects or creates shadows can play havoc in the mind of someone with dementia. Patterns on furnishings, floor coverings, wallpaper or even plates and cups can also fuel the imagination in a very disturbing way.

Dealing with the tricks the mind can play in someone with dementia can be very exhausting and at times utterly baffling. When you have a loved one who has dreamt that they are lying on a beach in the Caribbean and now wants to go outside in their swimsuit in a freezing gale, it is very tempting to tell them not to be so ridiculous. Likewise, if they are spending the entire day terrified that they have murdered someone as a result of a nightmare that they have had (and are now too petrified to do anything, including sleeping), patience can run very thin on the ground.

Ultimately reassurance about anything troubling your loved one is vital, remembering that arguments are futile and very counterproductive. Avoid contradiction since it will often make the situation more distressing. If possible, encourage the person with dementia to talk about what they are experiencing and make sure that you listen carefully to what they are saying. From this, try and gain an insight into what is happening to them and think long and hard about how you could implement changes within their environment or routine that might alleviate what they are seeing, hearing or believing. Think about keeping a log of their experiences – are they connected to a particular time of day? Consider vocabulary issues too - is what your loved one describing to you not so much what they are seeing, but their description of something that they cannot remember the correct word for? Finally, eliminate any illnesses, emotional disturbances, medication side-effects or problems with vision that could be contributing to what they are experiencing.

Stepping inside the world of someone with dementia often takes courage and resilience, and never more so than when you are dealing with a situation that, whilst it is the centre of your loved one’s life, you cannot see, hear, touch, smell, taste or feel it yourself. As someone who knows and loves them, however, you are uniquely placed to help them through a huge challenge for you both.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886

Wednesday 6 March 2013

Getting technical

How many times have you forgotten your pin number or tried to work out what an abbreviation in a text message means? How often have you cursed technology for presenting you with what appears to be an insurmountable problem, declaring that we were all better off when we only had pens and paper?

Imagine then if you can only remember a life of pen and paper, and modern technology is an alien concept. For people with dementia, an abbreviation in a text message could remain utterly unfathomable permanently. Having to remember a pin number could end your ability to go out shopping with a card that in theory provides access to your money, but only if you can remember those magic digits.

As dementia progresses, telephone calls can become problematic because you need visual clues to be able to communicate to the best of your ability. Even trying to operate a TV remote can leave you frustrated and bewildered – so many channels, so much choice… maybe too much choice. The world can become an increasingly isolating and unfamiliar place when your mind no longer helps you to process information that the rest of us take for granted.

Many of these problems stem from living in a faceless society. We communicate less and less in person – if an email or text message will suffice it is often quicker and easier. We use numbers to keep our cards secure when once a simple signature would have been all that was needed to purchase goods. Many shops now expect you to serve yourself when you want to buy something. We are encouraged to bank online, but again this involves remembering the right answers to get through the security. Even making a phone call regarding a service can leave you wading through those dreaded selection menus, unsure of which button to press – if you can even recall what all the options were.

How do people with dementia cope? The answer is with great difficulty. If you are fortunate enough to have a loved one caring for you, much of the burden of running the affairs in your life (be they financial, social, or simple household matters) will, over time, fall to them, which in the case of financial affairs often means going through the complex processes of Power of Attorney (if you are able to facilitate this). That is not to say that you necessarily want to lose control over your life, just that the systems within our shops and services are not, at present, widely adapted to help people with dementia to remain in charge of their affairs.

Thankfully the Dementia Friendly Communities initiative is involving leading companies in trying to understand how they can modify their systems to help people with dementia. Let’s hope they can grasp the scale of these problems, the debilitating effect they can have on daily life, and find ways to modify how they run their businesses to help people with dementia to keep their independence for longer.

But what about the more basic problems like using the telephone and operating the TV? Making devices simpler is one solution, but ultimately someone with advancing dementia will often come to rely on those nearest and dearest to them to help with their communication and entertainment needs. Proof, if it were needed, that nothing can really beat human contact.

So can technology and dementia ever really be happy bedfellows? You might think that is unlikely, but as awareness of the needs of people with dementia grows, there are plenty of companies looking to innovate products that can provide real 21st century solutions that benefit rather than baffle people with dementia.

Of course they won’t work for everyone – after all the best dementia care is about focusing on the individual and what is right for them. It's also unlikely that one piece of technology in isolation will be useful for a person throughout their entire life with dementia. Nevertheless, I think my dad would have benefited from a little technology in his life, not least a device that could have alerted us when he collapsed at home, and prevented him being left on the floor all night. Equally, technology that could have provided the kind of support and peace of mind that might have kept him living in his own home for longer would have been a plus point.

So, sometimes technology can be a positive thing for people with dementia, and indeed sometimes it is actively embraced by those living with the disease. Take for example how some very inspiring people who are living with dementia are communicating their journey through blogs and social media. It always reminds me that for everyone I meet who tells me they don’t understand social media and "could never blog" there are some people, facing huge challenges with cognition, who find a way to break down those barriers and get their stories out there. For them, getting technical is a lifeline, and for us it means we can learn from the REAL experts in dementia.

Until next time...

Beth x

You can follow me on Twitter: @bethyb1886