Troubleshooting checklist

Advanced dementia brings many challenges for the person living with it and also their family and carer(s). Not only can you often feel like you need to be a bit of a detective for your loved one (as I described here in relation to detecting pain), you can also find yourself baffled by what can appear to be very simple problems that frequently prove quite difficult to solve.

Drawing upon our experiences with my dad, and judging by the correspondence I receive about problems that are troubling carers, families and professionals, there are some common issues that many of us struggle to find solutions to. In this blog post I'm going to tackle five of them, starting with something that plagued my poor dad.

Dry/Itchy skin

There are few more distressing conditions than those that irritate our skin. The skin is the largest organ of the body, but unfortunately as we age our skin becomes thinner, more prone to bruising and tearing, and can suffer immensely from poor diet, dehydration and a lack of attention to detail in cleaning and moisturising.

If a person becomes incontinent the delicate genital skin can become very sore and inflamed if it is kept in contact with soiled pads. Equally, if a person can no longer wash themselves, those assisting them are unlikely to do it with the same vigour and thoroughness as the individual themselves would have in years past, mostly because we are all naturally worried about hurting anyone we are caring for.

Other problems can include difficulty in getting someone into a bath or shower, increasing the temptation to use deodorants or perfumes as very inadequate substitutes. Continuing to use very harsh commercial washing products, rather than switching to more natural alternatives (that can be found online), can dry and irritate the skin. A person with advanced dementia can also scratch skin until it bleeds out of boredom, so fingernails must be kept short and neatly filed.

A washing routine that involves a full body bath or shower is vital - bed baths, though sometimes necessary, are no substitute for a proper wash and rinse in the long term. Switching to natural washing and moisturising products, alongside non-biological laundry detergents, should help to eliminate irritants. If you are assisting a person to wash, make sure that when you've washed and rinsed them that they don't have dry scaly skin remaining, particularly on their scalp. This often doesn't get washed properly because of the hair covering it, but scaly skin washes off with a few minutes of a soapy head massage. Dry the person’s body thoroughly and apply a natural moisturising product - anything containing alcohol is likely to dry the skin (and that includes common prescription preparations that are meant to solve dry skin).

One final tip, the smells of familiar cosmetics or washing products can be great for reminiscence, even if the skin can no longer tolerate them. You can always spray perfumes onto fabrics (with care) or create scent boxes, where you put individuals products or essential oils into different compartments of a box and sit with a person recounting what the smells represent to them.

Poor appetite

Thankfully this is something that my father never had to live with, aside from the times when he was unwell, but it is very common for people with advanced dementia to experience a poor appetite. I've written extensively about digestion and eating, but there are a few more tips to share with you.

Taste buds change as we age, often becoming less sensitive. This is particularly true for people living with advanced dementia, who are known to struggle both with tastes and textures of food, as well as the act of swallowing itself. Ensure that dysphagia (swallowing problems) have been ruled out, alongside any dental issues. Make sure meals are served at an appropriate temperature, in a pleasant environment with no distractions, and that a familiar mealtime routine is used, including eating with your loved one to encourage them to eat too. Be mindful of the tableware you are using, including cloths, plates and cutlery. Offer additional healthy snacks between meals if necessary.

Food must be appetising - even when pureed. If in any doubt, try it yourself! Using food as reminiscence can work very well for some people, but equally those with a flagging appetite may need to be offered something new. Experiment with tastes and textures, and try stronger flavours - for example sweet and sour, curry or Italian food. Make sure that any drinks you are offering alongside the meal aren't tainting the taste (avoid squash and go for water or natural juice). 

Also offer a person opportunities to stimulate their appetite, with activity that makes them hungry and access to some fresh air. Finally, ensure you rule out side-effects of medications - even if a clinician reassures you that a medication isn't causing appetite problems, trust your gut instinct (pardon the pun). Many older people are on a cocktail of different medications, and the interaction between them could easily cause someone to go off their food.

Sleepiness

One of the things many families find very difficult to come to terms with is the increasing sleepiness of their loved one in the more advanced stages of dementia. A person with dementia may sleep more than usual during the day, making the relationship with relatives feel even more distant.

It can seem pointless spending time with your loved one if they are frequently asleep, but I always found the opposite to be true. Firstly it's special to be the first person they see when they wake up. Secondly, you can use the time for your own reflection and relaxation: There is something very peaceful about a loved one sleeping, and I always found it the perfect time to have a cuppa and put my feet up.

Increased sleepiness, beyond what is usual for the person, can indicate infection, particularly chest or UTI, so it's important to have those ruled out if you are concerned. Medications can often cause sleepiness, particularly antibiotics, and again be mindful of interactions between medications.  Also think about a person's environment - warmth and sunshine can be very sleep inducing for some people.

Certain times of the day are also more likely to produce sleepiness, for example after a particularly satisfying meal or even from passing an overdue bowel movement. In trying to understand sleepiness, also make sure you've examined night-time sleeping patterns – it sounds obvious, but if a person isn't sleeping well during the night it is hardly surprising that they are tired during the day.

The other, often overlooked, aspect to why people are sleepy is because they simply aren't offered anything to do. Imagine spending day after day sitting in a hot room with a TV blaring - most people would prefer to be dreaming than be subjected to that. Offer gentle encouragement towards occupation or activity, and suggest different activities if your initial suggestions are rejected.

Constipation

Being 'bunged up' is awful for anyone, but particularly for a person who is immobile and/or unable to articulate the discomfort they feel. Most people aren't great at talking about poo, but without the regular movement of it toxins build up in the body and pain and discomfort are rife.

If a person can still use the toilet unaided, constipation may not be immediately apparent to those who are supporting them, particularly if the person can't express the problems they are having. If a person is using incontinence pads, keeping a record of the soiling pattern of those is a useful indicator for both dehydration and changes in bowel movements.

One of the most important ways to prevent constipation is through good hydration and a diet rich in fibre, including fresh fruit and vegetables. In relation to diet, introduce different foods gradually or it may cause constipation to be replaced with diarrhoea. 

Exercise is also a vital component in preventing constipation. People with advanced dementia are often severely lacking in exercise if they have become immobile, but there are still ways to help, included seated exercise programmes that are offered with appropriate assistance. Even gentle massage of the belly can be very helpful, but make sure this is conducted by someone who is an expert in this form of therapy.

Finally, again ensure that you have ruled out any medication side-effects or interactions that could be causing constipation.

Feeling cold

Some of us feel the cold more than others. As we age, everyone is likely to feel the cold more, particularly if they have become immobile or lost weight. For most of us we can just get up, switch the heating on, shut the window, move to a different room, put extra clothing on or take a warm bath, but if someone cannot complete those tasks, or struggles to articulate how they are feeling, then they could be sat frozen and miserable, potentially leading to other health complications.

Whilst being in an environment that is too hot can be very unhealthy (hospitals and residential care homes take note!), sensitivity towards ambient temperature will vary from person to person. Infection and pain will also have a role to play in making a person feel cold or hot.

A blanket on the knees, leg warmers, cosy slippers, gloves/mittens or hats are all useful extra layers if an individual is feeling cold, but be mindful that a person with advanced dementia may persistently remove these items – sometimes because they are uncomfortable or making them too hot, but also potentially because they are unsure why they are wearing them or find the garments unfamiliar.

Think carefully about the environment, possible droughts, positioning near windows or doors, and hot spots (places where temperatures fluctuate in a room or between different rooms). When the season’s change, don’t assume that because you shed an extra layer or are happy to sit in a conservatory with the door open that a person with advanced dementia will feel the same. If a person is constantly losing weight, they will also feel the cold far more.

Aside from asking a person if they are warm enough, and reacting to what they tell you, observe them. Hold their hand, stroke their arm or head, or give a gentle massage if they are happy with that. Do they feel cold? Look at their facial expressions. Also be mindful of any medical conditions that affect their blood flow, and always remember that if they are poorly getting cold could make them worse.

Until next time...

You can follow me on Twitter: @bethyb1886

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A loss of innocence

As those of you who read this blog post last year will know, April is a difficult month for my family. While the spring flowers come into full bloom, the lambs scamper in the fields and the temperatures warm up, this ambush of fresh colour and new life contrasts with memories of April 2012, a month that changed my life forever.

I've written about bereavement before, but I've found that as the time passes and I reflect on coping with the loss of my father, so my understanding about the process of grief and healing evolves. The title of this blog post perhaps reflects that more than anything else I could write. Put simply, losing such a close loved one is, I feel, a loss of innocence.

We associate innocence with childhood, and arguably losing a parent during childhood would potentially be even more life-changing. Yet as adults we aren't immune to feeling utterly bereft as a result of bereavement. I've heard many adults describe losing a parent as being orphaned, even though society generally only sees orphans as children.

When we are surrounded by the people that fill our earliest memories and who are most closely linked to our life experiences we feel secure. When one of those people departs, as is certain to happen one day, we are confronted by the full force of bereavement - something we can never really prepare for even if a loved one's passing is expected.

Life is not and will never be as it was, and unlike many aspects of our existence this is something that we have no control over - we cannot bring our loved ones back. The innocence we had towards life, love and the complex web of feelings that joins all of that up is gone. I think for me this is most starkly illustrated in a particularly bleak reoccurring memory I have.

I was with my dad when he died, and life-changing though that was I could never have been anywhere other than by his side. I recall it very vividly, and the aftermath, as first the GP came to certify his death and then the undertakers came to move his body to the chapel of rest. All first-time experiences for me, and none of them made any easier by knowing that those moments were coming many days before they happened.

My most bleak reoccurring memory, however, is from over a week later, when we visited dad at the chapel of rest before his funeral. Seeing his body perfectly presented but coldly lifeless in his coffin has haunted many a night-time for me. It is that image that forces my mind to relive his passing, questioning if I should have visited the chapel of rest at all.

I think that memory remains so vivid, when others associated with dad's death sit more peacefully in the back of my mind, because it represented a loss of innocence for me. Dad gently slipping away in his bed seems more natural than dad's body lying in a coffin. That visit to the chapel of rest was very confronting and may never sit easily with me, which is a reality I have to accept.

It was a visit I made because I needed to see for myself that everything was as it should be, but nothing could prepare me for it or will soothe the memories it leaves me with, save for dad's strong arms to give me a big hug and comfort me, something of course that can never happen.

My mum tells me that losing her mum is still incredibly hard to come to terms with 26 years later. Sadly I know many friends who have faced their own bereavements more recently - for some the tears are daily, for others the regrets are haunting. Some say their children have helped them cope. Others have found strength through their faith. What I believe we all have in common, however, is that loss of innocence. Bring brave in this new world is a struggle that for some people becomes engulfing.

I've had conversations with friends about acceptable time-frames for bereavement. How long is it 'ok' to grieve for? My personal view is there is no time limit, nor is there an 'acceptable' path, a one-size-fits-all coping method, or a magic solution. Some people say time heals. With the two year anniversary of my dad's passing upcoming, all I can say is that time has given me a mixture of emotions - the positive has been a reflective perspective and a huge amount of love and pride in being able to call such an amazing man my dad, but the negative remains those vivid images.

Each of us will have our own positives and negatives. No one can jump inside someone else’s head and tell them how to feel or cope or 'get on with life'. Finding your own way is one of the great unknowns in bereavement. The only way to protect yourself from this is to have no one and nothing in your life that you would ever or could ever mourn but that, for me, really wouldn't be a life. The joy our loved ones give us is the reason the pain is so acutely felt when they leave us. An irreversible loss of innocence that binds us to our everlasting love for them.

Until next time...

You can follow me on Twitter: @bethyb1886

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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...

You can follow me on Twitter: @bethyb1886

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Amour

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...

You can follow me on Twitter: @bethyb1886

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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 http://youtu.be/hT7HtCvwmq4 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: http://www.bethbritton.com/.

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...

You can follow me on Twitter: @bethyb1886

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The corners of your mind

I’m a bit of a fan of all things vintage, as you might have gathered given my love of our older generations. Music is no exception to this rule, hence the title of this blog post coming from a much loved song, ‘The way we were’.

 

 

I’ve always felt that the lyrics to this song are a rather poignant reminder of how life changes through the years. It also has important meanings in relation to our memories, the invisible library that lives within our brain and chronicles our lives. Should dementia ever set in, that library becomes muddled, and eventually toms of knowledge are like books that have been borrowed from the library and never returned. The person with dementia then becomes a bit like a frantic librarian, trying desperately to remember where they have stored the particular segment of knowledge that is required.

I wrote in 'Loving our elders and betters' about how, when an older person dies, "It is as if a library has burnt down." Many people would argue that dementia is like a slow burn, very gradually turning memories to cinders, often initially with little physical evidence of the ‘fire’ taking place. Given the choice I think some people facing such a future would rather experience a giant inferno that engulfs their lives with such rapidity that they have no idea that it has even happened, but dementia is rarely like that.

It teases the mind, allowing us to retain selected memories, often those going back many years, but not always the most useful ones. Those crucial practical memories of how to undertake and successfully complete tasks may go very early, as can memories of what we did or said a minute, hour, day or week ago. The precious memories of key life events, and key individuals in our lives, may also end up being filed under absent.

Being deprived of that last set of memories is particularly painful because they characterise our lives and us as individuals. They act as a safety blanket, giving us a place to meander into during those quiet moments of reflection, or provide thoughts of positivity and strength when we are feeling vulnerable or worried. We want to be able to remember people, places and things that are important to us, knowledge we have studied hard to acquire or experiences we want to be able to pass on, but dementia has other ideas.

Memory problems are something we generally – and wrongly - associate with ageing, as I wrote about here. Moreover, I think that throughout our lives many of us are guilty of taking our own memory for granted, and in our interactions with others we readily expect their mind to perform with seamless speed and accuracy. We don’t have time or patience for a hunt around someone else's personal library – we want our information instantly, and not being able to deliver that often leads to the belief that someone is unintelligent, useless, worthless or stupid.

However dementia, and the way in which it can affect our memories, can hit anyone and not just in old age. Having a previously brilliant brain is no guarantee that you won’t get dementia. I’ve met leading doctors, academics and businessmen who are living with dementia – all had hugely admired brains that have now been ravaged. My dad, whilst never a man of high academic standing, had a truly impressive mind – his knowledge of the countryside, farming and animals was second to none. His wisdom was a gift that as a child I never really appreciated. Now it’s gone, I miss it more than words can say.

The corners of our minds harbour things that we may think we will never need, but each memory has its place and importance and being without any of them will adversely affect our lives at some point. We talk a lot about memory ‘loss’ in dementia like it is something that can be found again. Sadly even for people who achieve respite or improvement from their symptoms through therapeutic interventions, they are still living with a terminal disease that is characterised by eventual decline.

What I admire most, however, is the way in which many people with dementia try to guard against this, always working to prevent dementia steeling more books from their memory library. I think as outsiders looking in, we often don’t realise just how hard people with dementia try in order to maintain normality and keep all of those important memories alive. For many, notebooks and post-it notes become their allies – the feeling being that what cannot be remembered must be written down.

Increasingly I think technology (smartphones, tablets and other handheld devices) will have a role to play, particularly for people who are diagnosed with younger onset dementia and are already used to leading very technological lives. However, I think nothing will ever really beat our loved ones for helping to keep memories alive and effectively providing a 'Back Up Brain'* for us all, regardless of whether we develop dementia or not.

Dementia has the power to literally re-write and remove our memories, twisting, confusing and manipulating those precious nuggets of understanding and experience that we build up over our lives. As the song tells us, "Memories may be beautiful and yet, what’s too painful to remember, we simply choose to forget." Having that choice is a wonderful thing that we should never take for granted. 

Until next time...

You can follow me on Twitter: @bethyb1886

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*Back Up Brain – BUB –  is a phrase borrowed from my inspirational friend Kate Swaffer, an Australian lady living with young-onset dementia for whom her husband is her primary BUB. I would recommend checking out Kate’s blog http://kateswaffer.com/daily-blog/.

Being a pain detective

One of the questions I’m asked a lot in relation to dementia care is around how we find out if someone is in pain. In advanced dementia, when potentially a person cannot articulate clearly if they are in pain, and if they are, where that pain is located, it can be really difficult for those caring for them to ensure that they have the care they need.

We experienced examples of this with my dad. When he was first diagnosed with vascular dementia he was still walking and talking and generally getting into various scrapes. He had a few trips to A&E to be patched up when he fell, including one occasion when he split a blood vessel in his head and had to have emergency staples to close the wound (and when I say emergency I mean that there was no time for local anaesthetic – dad didn’t even flinch).

He was becoming increasing unsteady on his feet and aside from the effect dementia was having on his body, we also knew that there was an unrelated physical cause: Dad’s knee was gradually wearing away - he had been due a knee replacement operation for many years. Eventually he became unable to articulate when his knee was particularly painful or ask for pain relief, and with the risk posed by general anaesthetic he wasn’t suitable for the replacement operation.

It became a ‘guessing game’ to work out when he needed pain relief. On the one hand the nurses looking after him felt he was more likely to need it when he was walking (which he frequently did and couldn’t be dissuaded from), but we also knew that for many years previously dad had often complained about his knee more when he did nothing and it began to ‘seize up’ – hence often being restless in bed.

My dad was never one to make a fuss or take medication unless absolutely necessary (indigestion remedies and throat pastels aside!) and that didn’t change when he was living with dementia. He would dismiss any suggestion that he was struggling with his knee or that walking had become painful, then one day he just stopped walking – we put it down to the knee finally giving up and potentially his brain also giving up on trying to walk.

Of course pain relief problems don’t just exist in relation to joints. Dad would develop bladder infections: Anyone who’s had a UTI will know that they can be very painful, and their effects can rapidly escalate if a person is left in a soiled incontinence pad (see my blog post on incontinence here). Dad would sometimes hold his head – did that mean he had a headache? The atmosphere in his care home was often very oppressive, and occasionally family members would have headaches whilst visiting dad, so it wasn’t inconceivable that he may have one too. When dad became unwell with upper respiratory infections he was often given paracetamol, mostly to control his temperature, but it is highly likely that he was also suffering with a sore throat and possibly ear or sinus pain too; we never knew if his low dose of paracetamol was enough to give him relief from all of his symptoms.

However, perhaps the most startling example of the ‘guessing game’ relating to dad’s pain management came during one particular inpatient experience. Dad was in hospital for pneumonia and had recovered quite well from initially being very ill. The ward staff were used to dad being quiet, but as he began to feel better he became more vocal. On routinely checking dad’s notes we noticed he’d been written up for morphine and was being given other pain medication. We asked why, and were told that as he was making so much noise he must be in pain.

We pointed out that dad was most likely hungry. We suggested giving him some food (something hospital staff were generally very reluctant to do due to his swallowing problem). Unsurprisingly, once his tummy was full, dad was contented. The noise he was making was the only way he knew to articulate his hunger, which only goes to prove how easy it is to misinterpret what someone with dementia is trying to alert you to when they are unable to communicate that with clear conversation.

The key to understanding when someone with dementia is in pain is often down to knowledge of the person. If they can speak to you clearly and concisely that’s great, and certainly in the earlier stages of dementia that should be possible, but one of the problems we encountered with my dad was the differences that developed between what he said and what he meant.

So for example, someone can say they are not in pain when they actually are. They aren’t trying to deliberately mislead you; they may simply not understand the question, be unable to find the words to reply accurately, or indeed may not want to be a burden or ‘put you to any trouble’. They may not recognise a feeling they have as a pain, or could become confused about what is meant by the word pain.

The key to being a good pain detective is multifaceted. You need to understand the person’s history – do they have any known conditions or problems that would suggest that they could be in pain? Have there been any recent incidents or infections that could be causing pain, or is there any possibility that there could be but you don’t know about them? Has their behaviour pattern changed? Have you studied their expressions and body language?

The last two points are especially important when you are trying to detect pain. If you are examining the person, watch them closely to see if they behave unusually (that is unusually for them), or produce facial expressions or other body language that isn’t usual for them. Holding their hand whilst doing a physical examination may produce involuntary movements from them that suggest pain in the area you are examining.

It’s important never to assume someone is in pain, but also not to assume they aren’t if anything about their movement, mood, interaction or general health and wellbeing has changed. People have been known to continue moving when they have a broken bone and for that broken bone to go unnoticed as a result. It’s also important not to overmedicate, or assume that palliative pain relief is needed when any doubt exists as to whether someone is nearing the end of their life.

The side effects of any pain relief medication also need to be taken into account if other changes in a person become evident during the time they are receiving this medication. Anything that is likely to make someone drowsy or upset their stomach will mean they require close supervision. Medication should also be regularly reviewed to see if it is still necessary; in my view it is poor practice to simply leave a person on a medication unless there is a clear need for that medication.

We should never lose sight of the fact that just because someone is living with dementia it doesn’t mean that they don’t feel physical pain. Not being able to articulate something doesn’t mean you don’t feel it and aren’t longing for someone to make that pain go away. Our role is to help people with dementia to have the best quality of life possible, and minimising physical pain is a big part of that.

Until next time...

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