Monday 31 March 2014

The digestive balance

You know that feeling you get after a meal when you've eaten a bit too much and although you loved the meal you are wishing you had shown a bit more restraint? Commonly known as indigestion, something I suspect all of us have experienced at some point in our lives, it's usually easily remedied and life resumes without giving much thought to our previously grumbly tummy.

Our digestion is one of the most complex and remarkable systems in our body. It has always amazed me that it can take what we give it, process it, extract what our body needs and eliminate what it doesn't. When it works well it is what you might call a perfect ecosystem.

When it doesn't work so well, however, it has the potential to seriously affect our quality of life. Sadly for a person with dementia, and particularly as their dementia advances, this can create a myriad of problems that at best will affect their sense of wellbeing and at worst can be a direct threat to life itself.

Long before my father developed dementia he had a turbulent relationship with his stomach. However, living with dementia brought with it a huge array of problems for my dad's digestive system. At its worst he was vomiting 'chocolate brown' - the terminology used to describe vomiting blood from a bleed in the tummy. The cause of the bleed was most likely the aspirin dad had been taking for years, prescribed to thin his blood to try and avoid more of the clots that had manifested themselves as the mini strokes that had led to his vascular dementia.

At its mildest, dad's digestive problems were potentially 'just' indigestion. Without the ability to communicate, however, care staff often missed the subtle signs of discomfort - rubbing the belly, facial expressions suggesting pain, dad shifting in his seat repeatedly and occasionally belching. Changes in bowel movements weren't so easily ignored, but they could be misunderstood.

If a person with a history of runny stools is producing runny stools that isn't unusual for them, providing it isn't with a frequency, appearance or accompanied by other symptoms that suggest a more serious problem. If they become constipated, however, that is unusual. Never is it likely to be more important that you understand the person's history and habits, and observe them closely, than it is with that delicate digestive ecosystem.

During my father's time in care homes he was medicated with laxatives one minute and then given bulking agents the next. Along with an array of other regular medications (most of which were entirely unnecessary) plus frequent courses of antibiotics (all of which listed stomach problems as a side-effect) I am quite sure his digestion didn't have a clue what the hell was happening to it.

Other issues for dad's digestion came when he went through a period of being unable to regulate how much food he needed, which had the potential to lead to severe overeating, discomfort and vomiting unless it was carefully regulated. For the last four years of his life he had a swallowing problem (dysphagia, which I wrote about here), which meant a diet of pureed food, unpalatable thickeners, repeated chest infections and a decline in his gag reflect, which meant he would vomit regularly. He also became increasingly at risk of dehydration.

Then, of course, there were the dreaded outbreaks of diarrhoea and vomiting bugs in his care home, which always laid everyone low. To dad's great credit and fortitude, he did well to maintain a fairly healthy weight. Obviously as his dementia advanced and his physical health problems increased his weight did gradually decline, but we tried anything and everything to help him keep as much strength as possible.

The odds were largely stacked against us. Alongside infections and the side-effects of medications came other problems. When dad stopped walking, his digestion suffered greatly. Imagine having that indigestion I describe in the first paragraph and being unable to get up and move around to try and assist the digestive process? Digestive problems are another key reason why supporting people to maintain their mobility for as long as possible is vitally important.

Consider also how what someone consumes affects their digestion. In a care home environment, you can't always eat your preferred food at every mealtime. You may be given supplements to make up for a lack of nutrients in mass-produced food, be subjected to additives including artificial sweeteners, and don't even get me started on the 'quality' of hospital food.

You may also be given foods that aren't friendly to your digestive system. People can develop food intolerances at any stage of life, and with a push towards high-calorie dairy products to help maintain weight, so comes the possibility of a reaction to lactose. Certainly in my dad's case dairy products became a major problem for him in terms of phlegm production, and how this interacted with his dysphagia, all resulting in more vomiting.

Equally, consider how much gluten is included in most menus. Coeliac disease can have serious consequences for a person's digestive system, leaving them malnourished and at increased risk of stomach and bowel diseases, even cancers, and will affect their absorption of nutrients, including calcium, making osteoporosis more likely. You only then need a person to have a fall and break a bone and the outcome can be premature death.

Diet and the consequences of it are also very serious for people who have diabetes - a common long-term condition that many people live with alongside dementia. For those individuals, the need to carefully regulate their diet is vital to prevent a potentially fatal outcome. Dental health, or lack of it, can also contribute to digestive problems if teeth are rotting and poisoning a person’s body.

Even conditions like irritable bowel syndrome, that are very common and yet poorly understood, require careful management to avoid 'problem' foods and the possibility of severe pain and changes in bowel movements. Indeed, the power of the digestive system is such that individual 'trigger' foods can be responsible for a whole host of problems, and not necessarily directly related to digestion either - take for example migraine.

If you were caring for a person with dementia who had limited communication, who had no history of migraines that you knew of and yet began experiencing regular severe headaches, nausea and changes in vision, would you consider their diet and digestion? Probably not, but keeping a food diary might prove very enlightening if you need to eliminate food as a possible source of their symptoms.

Part of the problem with digestion is that we just take it for granted. We feel hungry, we eat, we go to the loo - at its best it is a cycle of pleasure and relief that if it isn't giving us any problems we tend to just ignore. Self-help is often the route to solving any digestive issues, but as a person's dementia progresses that can become increasingly impossible for them.

Understanding the delicate nature of the digestive balance, the problems that can arise, and the effect they can have on a person's wellbeing and quality of life - and at their most severe the person's will to live - is vital to providing good quality dementia care. Alongside this it is also important to keep in mind the effect of not just how the person feels inside their body, but how they will feel if they have faecal incontinence and are left sat in their own faeces, or indeed have vomited and have been left with dried vomit on their body or clothes.

So next time you feel sick, have diarrhoea, are constipated, have acid reflux or just have symptoms that can only be described as a sore tummy, imagine feeling like that and being unable to help yourself or clearly express your symptoms. Not a pleasant thought is it?

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 17 March 2014


There is something universal about the language of love. Across the world we may have many different words for it but the meaning remains the same, and most importantly of all the endless ways of demonstrating it transcend barriers. There isn't a word that can truly convey the beauty or perfection of love.

Towards the end of 2013 I did a radio interview where the presenter repeatedly quizzed me about why I chose to care for my father instead of going to university and doing all the 'normal' things that people in their teens and twenties do. My very repetitive reply was that he was my dad and I loved him.

It was a simple sentiment, and I honestly felt no need to be more expressive. Yet clearly my thought processes, emotions and feelings were somewhat lost on the presenter, who seemed utterly baffled by what I was trying to convey, so much so that he rephrased his question on several occasions.

Is it really so difficult to understand that you would care for a loved one because they are just that, a loved one? The materialism of life, and the desire to climb the greasy pole to facilitate that materialism that is educated into our children at ever younger ages, didn't pass me by, it just never interested me. 

Why? Because some things are more important. A person is more precious than any 'thing' you could buy or have, and the feelings a person can elicit in those who know them are more powerful than any 'thing' could hope to emulate. I never weighted up the option of a university education and the potential for a high-flying career against my dad's needs. Maybe that makes me very odd, but I know I'm not the only person who would have acted in this way.

Millions of family carers do what I did, some do much more, others less, but I would suggest most do what they do because of love. For some it will be duty and they will feel burden not love. For others it may be a situation of convenience or dictated by a financial motivation. But for the vast majority it will be unconditional, selfless love.

Wordsmiths far more illustrious than I have tried to explain what love is, but as I said earlier, my personal view is that it goes beyond words. It's actionable rather than explainable. You may think the greatest manifestations of it come from major life-changing moments like meeting your partner, marriage or the birth of a child, but as many a carer could tell you, it can be far more subtle everyday moments.

Dementia taught me to tell my dad I loved him every time I saw him. I say dementia taught me because a diagnosis of a terminal disease makes it imperative that you make the most of every moment. There isn't time to be bashful - you will have a long time to regret what you didn't have the courage to say or do.

Saying those three little words was a verbal expression of my feelings to a man who often never responded. But during the moments when he did respond, and jumbled words along the lines of “Love you too” came out of his mouth, it was like magic. Most days we settled for much more subtle expression - a squeeze of the hand, singing a line in a song, our eyes meeting or a reciprocated smile.

Really simple everyday gestures that ooze love are amazing, and people with advanced dementia can have a real advantage over people without dementia in those situations, since they rely so much less on words and much more on action, however subtle it might be. If you as the recipient aren't alert to those moments they may well pass you by. If anything should motivate you to be more observant then that is it - believe me, it’s worth it.

All the things you do as a carer, from the simple to the complex, from the advocacy to the laundry, the shopping to supporting eating and drinking, all of those contain subtle moments that show your love. Moreover, during those difficult moments, the sadness, the emptiness, the emotional rollercoaster of being a carer, it's the love you feel that gets you through. Perhaps that is why the theme of love, of being loved and feeling love, feature so prominently at most funerals - in the toughest times, love can pull you though when you feel you cannot give any more or go on being.

After that radio interview, I thought about what might have prompted the presenter’s line of questioning, and the persistence he showed in trying to elicit a different response out of me. Perhaps university was the best time of his life and he felt I'd missed out. Perhaps he thought the lack of a career and the financial security that could have come from that had deprived me of opportunities to see and do things that have now passed me by.

Or maybe he had just never been a carer. Or lost a parent he loved. For anyone who has, I think my motivation for doing what I did would be very clear. Of course the great beauty of life lies in the fact that we all take our own path, for better or worse, and what was right for me wouldn't be right for everyone.

Finding love, expressing love and appreciating the many different ways in which love can manifest itself is the greatest joy life can give you. Caring for my father was a privilege and a blessing that I wished had never ended. It was borne though love, sustained though love and lives on though my work, which incidentally I also love! The joy of amour is truly a wonderful thing.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 3 March 2014

Can we really ‘Do something better together’?

Given that healthcare was, for a very long time, a closed shop in terms of opportunities for patient input and examples of the NHS listening to the lived experience, we can but applaud initiatives like NHS Change Day and NHS Citizen. I know a lot of people are cynical about improvement drives and headline-grabbing enterprises, but if there is an opportunity to put the needs of people with dementia and their carers in the spotlight then I am willing to try it.

For those of you not familiar with NHS Change Day, we had the first example of it last year and it received significant acclaim. It’s not just for NHS employees, but for anyone with an interest, be it personal or professional, in UK healthcare. The strapline of the campaign is simple: ‘Do something better together’. Your pledge can be individual or organisational or indeed anywhere in between. In fact there are very few ‘rules’ – the concept is about gathering pledges that improve healthcare. For this year's UK Change Day you can make a pledge until 31 March 2014.

My pledge for NHS Change Day 2014 is as follows:

“I pledge to help everyone within health and social care increase their understanding of dementia by sharing my experiences and knowledge.”

Absorbing the unique experiences of people who are living with dementia, and those who love and care for them, is vital to lift dementia out of the shadows of stigma and improve care and support for all.

Make YOUR pledge to find 2 minutes to watch the film I made for the G8 Dementia Summit which highlights my experiences as a carer for my father who lived with vascular dementia for 19 years.

Find out more about my work on my website:

You can support my pledge here.

NHS Citizen is a far newer concept, and is about gathering ideas that can be fed into NHS policy making. The most popular ideas will be put forward for discussion with the NHS board at the Assembly Meeting. Again there are very few ‘rules’ – it’s about capturing your idea succinctly and then selling it to voters (voters being anyone who registers with the site).

My NHS Citizen idea is as follows:

Improved support for people with dementia and their carers.

People who are living with dementia and their carers come into contact with many different areas of the NHS, from GP and community services, to A&E, inpatient and palliative care services.

Dementia rarely exists in isolation, and many people who develop it have, or go on to develop, other long-term conditions that require specialist care. Over time they may also need emergency treatment for falls or infections.

Improved support can benefit everyone, people with dementia, carers and professionals.

Dementia is YOUR business!

If you are a Doctor, Nurse, HCA, Physio, OT, Speech and Language Therapist, Chiropodist, Audiologist, Optometrist, Dentist, Dietician, Pharmacist or indeed any healthcare professional who provides support for adults (and particularly older adults) you will be meeting and offering treatment to people with dementia.

Dementia is YOUR business and I believe that you deserve the training and insight you need to provide the level of care that your patients deserve and that you would want to provide.

You can support my idea here.

I won't deny that there is a similarity between the themes of my NHS Change Day pledge and my NHS Citizen idea. Why? Because I believe that both opportunities to highlight the needs of people with dementia and their carers require consistent messages about listening, understanding, awareness raising, training and insight.

What I’m proposing isn’t especially radical, and I’m not suggesting that in some areas of the UK it isn’t already happening. Dementia has had significant focus since the Prime Minister’s Dementia Challenge was launched; indeed those advocating for people living with other diseases and conditions may well wish that they enjoyed a similar spotlight. Being in everyone’s minds, however, doesn’t guarantee progress.

I hear every day from people who are struggling with dementia in their family. I also hear from professionals who are facing their own struggles with an education system that doesn’t prepare them for appropriately supporting people with dementia and their carers, and who must work in systems and environments that are not remotely dementia friendly.

Whether NHS Change Day and NHS Citizen will make a real difference to the lives of people with dementia and their carers is obviously debateable, and potentially nothing will change in the long-term, but I want to be positive and believe that together we really can do something better. My pledge and idea aren’t one-offs, they represent everything my work is about. I believe passionately that change and improvement are possible. Most significantly of all, though, I believe that the vast majority of people who could deliver those changes and improvements want to do so.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886