Another pill won't matter, will it?

There is a common misconception that there is a pill to fix virtually any health issue. I've written about this before ('A pill for everything?') in relation to medications for dementia (most notably prescribed for people with Alzheimer's Disease), but for this blog post I want to concentrate on a topic I'm seeing with alarming frequency in my consultancy work  - Poly pharmacy.

What is poly pharmacy?

Poly pharmacy is when a person, often an older person, is taking 4 or more medications. It's often related to older people because as our bodies age, more can start to go wrong that requires medication (or that it's perceived requires medication). Poly pharmacy is also more dangerous as we age because our bodies often can't cope with multiple medications as well, putting strain on vital organs and potentially affecting the person both physically and mentally.

How does poly pharmacy happen?

Very easily! Common medications that occur frequently in cases of poly pharmacy include drugs to treat high blood pressure, digestive problems, pain, diabetes, thyroid problems, sleeping problems, and medications for depression/mood/behaviour. Indeed, many times in my dad’s life with vascular dementia he was prescribed more than 4 medications, making him the subject of poly pharmacy (although we had never heard of this at the time).

There is a well worn joke that as you age you 'rattle' from all the pills you swallow, but poly pharmacy is no laughing matter, nor should it be ignored or considered 'the norm'.

Why is poly pharmacy a problem?

Once a person is taking more than 4 different medications, pharmaceutical companies cannot reliably tell you what the side-effects might be. Of course there might be none, but there could also be serious underlying problems developing that the person either is or isn't aware of. Unchecked, at best these can impact on the person's quality of life, and at worse could lead to serious illness or injury (for example falls if the person experiences sleepiness as a side-effect).

How does poly pharmacy impact upon a person with dementia?

Many people with dementia also live with other long-term conditions that require medication, or they are given medication to prevent certain conditions from developing (for example a statin because it's believed they lower cholesterol, although opinions are divided). Given the nature of the cognitive problems that characterise dementia, the person may be more vulnerable to being given medication because unlike someone who isn’t living with dementia, a person with dementia may not have the communication ability, or confidence, to question a prescription effectively.

The tipping point

The tipping point into poly pharmacy will vary from person to person, entirely dependent upon whether the individual has historically been a person who has lived with multiple long-term conditions for a long time prior to their dementia and is used to managing some or all of those conditions with medications.

However, the prescription of anti-dementia medication upon a diagnosis of dementia might take a person into the realms of poly pharmacy, as might the prescription of sleeping medication or anti-depressants, both of which are common pharmacological ways of 'managing' problems a person with dementia is perceived to have with 'behaviour'.

Questioning the prescription of such medication to manage 'Challenging behaviour' (a phrase I dislike - read this blog for the reasons why) is particularly important because these medications are often used instead of the more controversial antipsychotics. Antipsychotics have been the subject of a target to reduce their prescriptions since they were linked with serious side effects and even the premature deaths of people with dementia.

Replacing one 'chemical cosh' with another one, albeit potentially a milder type of medication, is still dangerous in my opinion, especially in a person already taking other medications who is then at risk of poly pharmacy.

Standing up against poly pharmacy

I feel strongly that everyone needs to understand the risks of poly pharmacy. That's not to say that every medication given is wrong, or that anyone should suddenly stop taking medications that may be absolutely essential to them. But awareness of poly pharmacy, the confidence to try and guard against becoming the subject of poly pharmacy, and regular reviews for anyone taking multiple medications is absolutely vital.

Doctors who understand poly pharmacy would always be very supportive of trying to avoid it, and only prescribing absolutely essential medications that are then regularly reviewed.

Supporting a person with dementia who may be at risk of poly pharmacy

Ideally, a person with dementia would be supported at medical appointments by a family member, friend or advocate, but that won't be the case for everyone. If the person is alone, or the individual with them doesn’t feel confident in speaking up or questioning a medication, then often the medication will just be prescribed.

Even social care professionals accompanying a person from a care home to a GP or hospital appointment may not feel they have the skills to question a prescription. For this reason, it is vital that training in poly pharmacy and empowering staff confidence is given by all social care providers, as they are often unofficial advocates for a person with dementia.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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How dementia and personality interact

We talk A LOT in dementia care about how dementia changes a person. Often it's distilled down into very negative language, and bracketed as 'challenging behaviour' (a phrase I dislike immensely). Yet, the spectrum of change is immense, very personal to each individual, and definitely worthy of far greater exploration and understanding.

Part of the reason that I think so many people struggle with the personality changes associated with dementia is you can't 'see' them in the way you can see a physical problem. Whilst physical changes can be very distressing - for example if a person becomes immobile, loses weight, loses teeth, wears a catheter or needs help to eat - we associate that type of change with a need to care for that person, helping to minimise any discomfort and keep them as well as possible.

Personality changes in the general discourse of life are bracketed under the 'mental health' banner, and as such have an additional stigma attached to them, before you even add in dementia as a factor. We also make a lot of assumptions when associating personality changes with dementia, most notably:

•   That the person with dementia has never experienced this type of change before. Are we really sure that in their whole life course to this point that they haven't had times when they've been emotional, depressed or angry? They may have concealed these feelings from others, even people very close to them. The difference may be that now they’ve developed dementia, they find it harder to conceal these elements of their personality.
 

•   That every person who develops dementia was a 'nice' person before they developed dementia. It may be unpalatable to admit it but we are all different, and some people just don't get on with other people of contrasting personalities no matter how much we might want them too - be they other residents in a care home, health and social care staff or even their own family. That, as they say, is life.

Personality changes can be temporary or permanent for a person with dementia, depending upon  the damage to the person's brain (for example a stroke may mean an instant change for a person), the type of dementia they have (for example people with a form of frontotemporal dementia may have more pronounced personality changes), and other factors such as who is around the person (the company of some individuals may trigger different reactions), their environment, other health conditions, side-effects of medications, and even issues like changes in the seasons (increased darkness in winter for example) or memories of certain times of the year, events, people or places.

 

Personality changes encompass as many differences as you can imagine. Examples include:

•    A previously relaxed person becoming very anxious or angry (or vice-versa).

•    A previously more detached person becoming much more emotional (or vice-versa).

•    A previously tough person becoming a lot 'softer' and showing their feelings more (or vice-versa) - This was true for my dad.

•    A previously private person becoming more of an exhibitionist (or vice-versa).

•    A previously tolerant person becoming intolerant (or vice-versa).

You may recognise someone you love, or yourself, as having undergone such a change, even a more subtle one, as a result of developing dementia. What I think those of us without dementia, and particularly family carers and health and social care professionals, need to understand is that:
 

•   Change is ok, even changes that we perceive as difficult. The more we worry, try to correct, mourn and yearn for the person 'as they were' the harder we make it for the person with dementia and ourselves. Adjustment is hard, I know that only too well, but failure to adjust is harder still.

•   If we can adapt our approach and interactions with the person, we have the ability to offer the mental equivalent of what I wrote about above in relation to physical changes, namely to; "Care for that person, helping to minimise any discomfort and keep them as well as possible". Examples of how to do this are through person-centred care, life-story work, reablement, occupation, sensory therapies (including touch), making spiritual connections, music, our approach to personal care, and even by something as simple as modifying the way we communicate.

•   Don't automatically view medication as the answer - often the first resort for any 'negative' personality changes is to assume that the person is depressed and put them onto anti-depressants. Medication may be suitable in a few situations, but generally the answer is greater understanding, care and support on the part of those around the person. Again, it goes back to the points about adjustment and adaptation.

Every day can, and often is, very different. Sometimes the changes in a person's personality may be more, or less, pronounced. If they become less pronounced, you may feel like the person is 'returning to their old self', only to see the 'reversal' of that the next day, week or month. It can seem cruel, and is a fertile breeding ground for the 'blame game', where the person with dementia, or a carer or family member, feels such changes very personally. If changes can be linked to a particular aspect of the person's life, then mitigating against that trigger could obviously be very beneficial, but sometimes there is no apparent 'reason' apart from the unpredictability of dementia.

 

During my dad's latter years with dementia I saw him cry more than I had in all of the years prior to that. I saw anger and anxiety too, which I wouldn't have associated with my dad prior to his dementia. With the power of hindsight, however, I can also see reasons for these differences in him, ways in which I, and others, may have contributed to them, not to mention environments like hospitals and care homes, and some medication he was given.

 

That's not to in any way exclude how vascular dementia affected my dad's brain - so much of what he experienced was, from the perspective of the physical changes in his brain, beyond our control. Coming to terms with that, whilst trying to provide the very best care and support you can, is a balancing act that is as fine as any personality change can be.

 

Until next time...

You can follow me on Twitter: @bethyb1886

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Spotting dementia

My last D4Dementia blog was all about remembering the person, and as World Alzheimer’s Month draws to a close for 2015, I want to tackle another theme from this month of awareness raising – spotting the signs of dementia.

I’ve written previously about the symptoms of dementia, and I don’t want to replicate the information given in that blog post. If you are concerned that you may be developing dementia, or indeed that a person close to you could be, then you may find the information in that blog post helpful.

What I want to explore is the various prevailing attitudes around spotting the signs of dementia, and some of the issues around diagnosis, particularly in relation to health and social care professionals. In my work I see many different sides of the diagnosis coin, from people who are diagnosed in a timely and appropriate way to others who have to fight for a diagnosis. There is also another group who are perhaps best summed up as the ‘worried well’.

One of the most unfortunate side-effects of the fantastic work that’s been done to raise awareness of dementia in the UK is that there is, occasionally, a tendency to see any irregular lapses in memory or changes to a person’s approach to day-to-day life as the beginnings of dementia. Sometimes dementia may be behind such lapses or changes, or indeed MCI (Mild Cognitive Impairment - which isn’t dementia and may never lead to dementia), but it is also important to remember that as human beings we don’t live in a laboratory and are exposed to numerous other factors in our lives that can adversely affect us in ways that may appear to be related to dementia.

I have been reminded of this on more than one occasion so far in 2015 as I’ve gone about some of my consultancy work. I often visit care homes with a remit related to the provision of dementia care and support, and sometimes staff will detail concerns they have about a particular person in their care. From the outset I always say that concerns, no matter how trivial they may seem to the person relaying them, are always valid, and I would much rather social care staff are alert to changes in a person’s health and wellbeing than simply ignoring them.  

However, we must always remember that other medical conditions, side-effects of medication (and particularly multiple medications that stray into polypharmacy), spells in hospital, changes in living accommodation, changes in family relationships or bereavement, and even changes in the care home itself (different staff, routines or redecoration) can cause temporary, and sometimes more long-term, negative effects for older people. 

Those effects may appear to be related to dementia, and of course the development of dementia can co-exist with any of the factors I’ve listed above, but jumping to conclusions isn’t helpful for anyone, not least the older person living in that care home who is perhaps already feeling like they're living under a sizable microscope. Documenting changes to build up a reliable picture, whilst utilising person-centred care skills to address any newly found deficiencies in the person’s care or environment (more one-to-one time, reviewing health/medication, making time to talk and listen to the person, offering comfort, occupation etc) is perhaps more helpful than immediately chasing after a diagnostic label.

The flip side of these circumstances is often something I hear about when family members contact me with concerns about a loved one who is (usually) living alone. Often they will have noticed changes over a considerable period of time, and found themselves gradually providing more and more care for their loved one. For many people, input from their GP, alongside some diagnostic tests and perhaps a referral to a memory clinic is the way in which those concerns are addressed.

But unfortunately that isn’t the case for everyone. Amongst the many families who’ve contact me this year was one who’d had the input of two GP’s over a considerable period of time, with both doctors coming to the conclusion that the individual giving concern wasn’t developing dementia. This was despite, to the best knowledge of the family, neither GP conducting the full range of tests and assessments – potentially, of course, because the person concerned didn’t consent to them.

What happens between a doctor and their patient is of course confidential, and therefore my anecdote will always be open to questioning and counter argument. My main concern, however, is for the individual concerned, whose state of health is putting them at risk of living in an unclean, unhealthy and potentially dangerous environment, and for the family who are struggling to provide the support their loved one needs because they simply aren’t supported themselves.

Whether a diagnosis of dementia is ever forthcoming or not for this person isn’t really the main problem. In theory of course a diagnosis should open doors to care and support, possibly even some medication, but frankly care and support should be there regardless of the judgement of this person’s GP when the family as a whole have clear and unequivocal social care needs.

Hopefully the advice I’ve provided will help this family, and of course you can’t fight everyone’s battles, but I think these two examples really show how polarised and fragmented the situation around spotting and diagnosing dementia remains, and that’s just in the UK. I’d be the first to acknowledge that significant strides have been made since the 10 years that my dad went without his diagnosis, but the spotting of dementia still remains a subjective and sometimes inaccurate art that verges between too much enthusiasm to diagnose and total oblivion to the blindingly obvious.

As awareness-raising messages about spotting the signs of dementia are refined over the months and years ahead, some sensible middle ground is undoubtedly needed.

Until next time...

You can follow me on Twitter: @bethyb1886

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Researching dementia

Last week statistics were released showing that during the last year 22,000 people took part in dementia research – a 60% rise - and that 10,000 people have signed up to Join Dementia Research.

Research isn’t a topic that I’ve written about extensively, which perhaps isn’t surprising given that I’m not a scientist or an academic. That doesn’t mean I have no interest in it, however. Aside from the very obvious personal feeling I have that I don’t want others to go through what my dad went through (particularly in the latter years of his dementia), I am an ambassador for dementia research charity BRACE, whose work I am constantly in awe of, and I write and speak extensively about the fact that, in reality, we actually know alarmingly little about dementia. 

This lack of knowledge has many causes, which include the historic lack of focus on dementia, the even greater lack of money put into dementia research in the past, and the sheer complexity that the many forms of dementia present to even the most scientific or academic brain. Studies have started and never produced results, and in terms of pharmaceuticals, drug trials have been abandoned due to unforeseen circumstances – for example drugs not producing the effects expected or unacceptable side-effects.

I have never been a person greatly influenced by the work of pharmaceuticals, although I do acknowledge that many people are supportive of the current (limited) drugs that are available and of course any new breakthroughs – like for example Eli Lilly’s Solanezumab drug announcement at the recent Alzheimer’s Association International Conference – are of course to be welcomed if indeed there is widespread benefit to be had for people with Alzheimer’s Disease in the future.

This is, however, such a tiny part of the overall picture. With so many different forms of dementia, and different nuances in how each person with a particular form of dementia experiences their symptoms, there is so much more that needs to be determined before we can honestly say that our understanding, and treatment for, the many different types of dementia has progressed to the point that we have reached for the many different types of cancer.

With that in mind, any increase in the numbers of research participants is extremely important, and I suspect is largely down to the profile dementia now has that it simply never had in the past. So what are the benefits of being involved in dementia research?

For people with dementia:

Many people I know who are living with dementia have actively sought to be involved in research. These individuals often describe involvement in research as an opportunity to feel useful, to be proactive after diagnosis and with the potential to make a difference to the lives of others now and in the future.

For families of people living with dementia:

Because a diagnosis of dementia impacts far and wide beyond the person with the diagnosis, many family members feel they want to do something that helps them to contribute to the wider understanding of dementia. Some people also view research as an opportunity broaden their own knowledge.

For society as a whole:

As dementia seeps into the public consciousness like never before, more individuals are learning about dementia and recognising that, as the numbers of people being diagnosed increases they, or someone they love, may also develop dementia in the future. To be able to help improve understanding and treatment is a powerful motivating factor.

So much of research really is about the future, and future-proofing health is often in the forefront of the minds of both researchers and participants, but I would sound a note of caution. While we think about improving health for the future, and ideally finding the treatments and potentially even cures for the different forms of dementia, we must never forget the people who are living with dementia NOW. 

Their needs are as important as our own need to avoid developing dementia in the future, and research into living well, lifestyle strategies, non-pharmacological therapies and care and support that focuses on improving quality of life is what is likely to benefit these individuals the most. I recall when my dad was alive, and particularly in the latter years of his dementia, the headlines about research ‘breakthroughs’ pretty much went over my head. They were utterly irrelevant for dad, who was my primary concern at that time, and although I don’t in any way dismiss genuine breakthroughs now, I have an equally strong sense that helping people in the  future doesn’t mean we neglect those living with dementia in the present.

Research for people living with dementia now, people living with dementia in the future, prevention of dementia and the many different aspects of treatment and care needs to be as broad as the participants signing up to participate in dementia research. That, for me, is the blueprint for a dementia research strategy that is befitting of the task ahead of us, and one that also does justice to the many people, like my dad, who have lived and died with dementia.

Until next time...

You can follow me on Twitter: @bethyb1886

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A holistic approach to multiple long-term conditions

One of the great myths around dementia is that it exists in isolation. If every person with dementia was only living with dementia and no other conditions, and they weren't at more risk of developing other conditions during the course of their dementia, then care and support would be infinitely more straightforward. The reality, however, is very different.

The description 'multiple long-term conditions' is relatively new terminology, and the knowledge around how to manage multiple long-term conditions isn't comprehensive. We don't know enough about the interactions between different conditions, or indeed how the associated polypharmacy (where a person is taking multiple medications) is going to affect each individual now and in the future.

Some conditions are explicitly linked with specific forms of dementia, a classic example being the association between vascular problems (IE: high blood pressure, heart disease and stroke) and vascular dementia. More generally, there have been many headlines written linking diabetes with dementia, and for people with a learning disability and dementia, the risk of epilepsy is increased.

There is so much more to this multiple condition landscape though, and a person who is living with dementia could quite easily be living with many other conditions that aren't specifically linked to their dementia but add additional layers of complexity, medication and even danger into their lives. Examples would include asthma, arthritis, ME, osteoporosis, eczema (and other skin conditions), coeliac disease and the many different cancers. Never forget also the numerous individuals who live with chronic pain, given that we know pain is very poorly recognized and treated for people with dementia. 

As a person ages they are also at more risk of hearing loss and sight loss. Macular degeneration, for example, can leave an older person blind. Coping with that type of sensory loss when an individual has dementia is inevitably going to make adjusting to losing your sight considerably more difficult, and likewise will make living with dementia much more complex and potentially lead to even more exclusion and loneliness. Equally, if joints like knees and hips begin to wear out and need replacing, that can also be very difficult for a person with dementia in terms of their ability to consent to an operation and successfully complete the long-term rehab that’s required.

Dementia can also lead to the development of other conditions, either though the progression of a person’s dementia or because they haven’t received optimum care – examples include: incontinence, dysphagia (swallowing problems), pressure sores (pressure ulcers), dehydration, malnutrition and the many circumstances that can lead to temporary or permanent immobility.

Equally, whilst being focused on the different physical conditions that a person with dementia can develop, it's important to remember that there are many mental health conditions that can live alongside dementia, and indeed sometimes be mistaken for dementia. Two of the most common are depression and delirium.

Yet despite all of the links that can be made very logically between multiple long-term conditions we are not good at treating people holistically. The NHS is largely organized to treat individual conditions, but as our population ages and more people live with multiple long-term conditions the need for that holistic model of care will only grow.

Worryingly then, I've heard of huge difficulties in providing care and support to people who are living with diabetes and dementia. These are two of the most common long-term conditions in the UK today, and the numbers of people living with both are likely to increase, particularly with obesity levels rising. Mismanagement of diabetes can have life-threatening consequences, and just because a person has managed to keep their diabetes under-control prior to developing dementia is no guarantee that they will be able to in the future as dementia complicates their landscape.

The challenges of caring for people who are living with dementia alongside other conditions are huge. A person can forget why they need to take certain medications, avoid particular foods or drinks or participate in certain tests, all of which can adversely affect the management of conditions that they live with alongside dementia.

One of the great mantras of my work has always been that a person with dementia will not be able to manage their dementia alone long-term. This is an even more prudent comment when you consider the other conditions a person may have that they require a family carer, alongside health and social care professionals, to help manage and support.

Only by treating and caring for a person in a holistic way throughout their entire life with dementia can we truly hope to meet the aspiration of enabling them to living well with dementia. Whole-person care, as part of the more widely recognized person-centred care model, is the only way forward. Expanding that to relationship-centred care will also enable carers and families to be seen as partners in care and receive the support that they need too.

Until next time...

You can follow me on Twitter: @bethyb1886

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Please note: In 2015 the NICE/SCIE 'National Collaborating Centre for Social Care' will publish guidance on the Social Care of Older People with Multiple Long-Term Conditions. Find out more here.

The ‘F’ word that no one wants to hear

Most older people are frightened of having them, most relatives of those older people are equally concerned by them, and most health and social care services are under pressure to avoid those in their care having them. Falls really are the ‘F’ word that no-one wants to hear.

 

The fear of falling that older people have stems from a variety of reasons - the most notable include the likelihood of injury (possibly serious injury that could include hospitalization, operations and long-term rehab - which could include a prolonged spell of being bedbound and/or needing residential care) and the loss of independence and confidence that a fall often brings. Other psychological problems include embarrassment, feelings of becoming a burden to others, and ultimately isolation from potentially not being able to get out and about as you once did.

 

If a person has osteoporosis, a fall is a serious matter. Broken bones, when you already have a condition where your bones are weak, is clearly something to be avoided. Post-menopausal ladies are particularly susceptible to osteoporosis and the drug treatments currently available are controversial, with some people claiming that they actually increase the chances of brittle bones.

 

For the relatives of an older person, the implications of a loved one falling can be huge, not just from the point of view of being incredibly anxious for their wellbeing (particularly if they need an operation), but also because a bad fall could lead to a long-term caring role if it leaves your relative less independent. The desire to minimize falls can often leave families wanting to wrap their loved one in cotton wool, but that in itself could lead to an older relative wanting to take more chances just to prove what they can do.

 

Risk-aversion, however, is something most commonly associated with health and social care professionals, as I wrote about here. Their services are often judged on the amount of falls those in their care have, and since serious falls can also lead to death from other complications in very frail individuals, they are under immense pressure to minimize falls. 

 

I dislike bringing every health issue back to finances, but it is a well-known fact that falls cost the health service a lot of money – in excess of £2billion a year.  Add in the pain, worry and potential long-term care implications and you would have a much higher figure (if indeed you could even put a cost on those). Despite this my dad, a gentleman who had multiple falls during the time when he was compelled to walk due to his dementia, was only ever given hip protectors and a crash mat by his bed to help minimize his chances of breaking bones. Possibly a hard-hat might have been more use on the occasion when he burst a blood vessel in his head from a fall and required staples in A&E.

 

Meanwhile, if you are an older person who is already in hospital, don't assume you are necessarily safe from falling. I recently heard about an internal study on falls that was conducted by an NHS Trust providing older people's inpatient mental health services. Amongst the stats they collected, they discovered that the people falling in their care were on average being given 4-12 different medications.

 

More worryingly, despite discovering this (which personally I don't find surprising), they didn't present either an explanation for such a significant level of polypharmacy or a proposal for how they were going to tackle it. Chances are little was really understood about these multiple drug interactions, and it was going to take a pioneering medical and pharmacy team to enable them to systematically review each patient and reduce their medications.

 

Although required to prescribe less antipsychotics in the treatment of people with dementia, medics often use other drugs such as antidepressants or sleeping tablets to make patients more 'compliant'. However, the effects on their cognition and ability to be alert enough to move around safely is likely to be severely impaired, and that is to say nothing of the side-effects and interactions from all of their other meds.

 

In this Trust, and indeed any health and social care service where older people are having falls, I would like to see a complete prescription policy review, environmental changes (for people with dementia), regular OT input that helps people with exercises (including for balance), and investment into stimulation and boredom-reducing activity. Alongside this needs to be sensory assessments (to check for eyesight problems that could affect a person’s ability to see where they are going, or hearing problems affecting balance), assessments for other medical conditions that could lead to an increased risk of falls, careful consideration of foot health and suitability of footwear, and appropriate provision of walking aids as required. Last, but by no means least, there must be safe staffing levels in health and social care environments.

 

It cannot be overstated just how important safe staffing levels are. Firstly they ensure adequate supervision, which whilst it won't prevent every fall will stop some and enable learning and change to happen to promote further falls reduction. Secondly they will provide support to people who want to (and need to) move around. Mobility is vital but it often requires support and for that to be available in a timely fashion, for example if a person wants to go to the loo urgently. 

 

Imagine being an older person needing the loo, asking for help to get to the loo, that help not being forthcoming, getting desperate and trying to go on your own, falling and then soiling yourself - a more undignified scenario you really cannot contemplate. The opposite outcome is a health or care professional coming to assist you on your first request, helping you to the loo, waiting for you (not returning 30 minutes later when you've got so fed up of waiting you've tried to move and fallen) and then helping you to get to wherever you need to go.

 

We have to elevate falls prevention (without becoming overtly risk adverse) into the priority it clearly is. NICE issued this guidance and there is plenty more well-researched literature, including this from the Kings Fund. We know falls are bad news for everyone involved, but for the person falling most of all. We talk extensively about the dignity agenda in the health and social care of older people - preserving that must include proactive falls reduction. The nature of the human spirit is such that we will never prevent every fall, and in trying to could stifle people's liberty in a totally unacceptable way, but the simple measures that are possible must be implemented.

 

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...

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