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

LIKE D4Dementia on Facebook 

On the move

For everyone who is fortunate enough to be able to move around independently, I would estimate that most take that for granted. Likewise, I would suggest that one of the key ideas people have about ageing is that immobility is likely to come hand in hand with getting older.

Along with wearing dentures, losing your driving licence, becoming incontinent and living with dementia, immobility is right up there in most people’s vision of what ‘being old’ is like. It’s a hugely stigmatised view of course, since many people live a very long life without encountering any of these problems. Indeed I once knew a lady in her 90’s who was still driving her little Mini around, was perfectly able to get to the toilet when she required it, still had all her own teeth, and most definitely didn’t have dementia.

Nevertheless, the image of the older person with their walking stick or zimmer frame looms large in most people’s vision of ageing and indeed of living with dementia. It is worth pointing out, however, that I’ve known many people who never really had mobility problems during their years with dementia, and only became confided to bed when they became ill with an infection that they died from shortly afterwards.

Supporting mobility is a key aspect of helping a person to live well with dementia. The exercise is good for their general health, the independence is good for their mind, and mobility ensures a sense of normality is retained when many other aspects of their life may be changing. That’s not to say that being mobile doesn’t present risks, particularly around the desire to walk a lot (as I wrote about here) and the potential for falls and accidents that can result in broken bones, cuts and bruises. All of these can take a longer to heal for an older person, and if a hip is seriously broken it can be a threat to someone’s life.

These risk factors often lead to worries about a person’s safety and security if their mobility is actively encouraged, but we shouldn’t become too risk adverse. Mobility is vital part of a person’s life that as families and professionals we should make sure we support. Keeping people seated or in bed simply to protect them from the potential for injury is likely to do a huge amount of harm to their physical and mental wellbeing, and even more so if restraints are used.

Seeing immobility as some kind of cosy cotton wool world is totally inaccurate. If someone becomes immobile it produces a whole range of added problems, most notably around pressure sores and increased risk of infections. My father had far more chest infections when he became immobile, and his GP was firmly of the belief that his lack of movement was contributing to his inability to effectively remove the secretions from his airways. Imagine being unwell with chest, bladder or stomach problems and unable to move – a fairly unpleasant thought for anyone to contemplate.

Maintaining an individual’s mobility when they are living with dementia does, however, produce challenges. If a person becomes unsteady on their feet and requires a walking aid, trying to support them to learn how to use that correctly can be very difficult. Keeping people mobile if they are beginning to struggle with independent mobility also requires a huge amount of commitment from professionals and/or family members.

In care settings, including hospitals, you need high staffing levels to ensure that there is enough support to help people to move around. Movement often takes time and patience and cannot be rushed. In almost every care setting there are never enough physiotherapists, occupational therapists and indeed supporting care staff who are ready, willing and able to help someone to walk down the corridor, go to the loo or indeed venture further.

Even if an individual does eventually become immobile, that doesn’t mean that they should be dumped in a room and left there all day, or excluded from events or activities simply because no one has time to give them the opportunity to move. One of the big problems in my dad’s care home was always the lack of wheelchairs; you would often have to beg and borrow in order to find a wheelchair for him to be moved from his room. It would be utterly unacceptable for someone to not have clean clothes or food in a care home, but apparently it’s perfectly acceptable to restrict their chance to move around just because they are unable to walk anymore.

Immobility has huge implications for a person’s quality of life. It can affect the opportunities they have for engagement, fun, new experiences and environments, and the pursuit of hobbies and interests. It is also likely to affect emotions, often producing frustration, anger or boredom. Indeed, whenever you feel someone who is immobile is producing ‘challenging behaviour’ ask yourself how you might feel in their circumstances. Some people can even lose the will to live through immobility.

For many years the Paralympic movement has shown us what people can do when they are restricted by mobility or movement (see my blog on the positive approach of Paralympians), yet we often see older people, people living in care homes and particularly people with dementia, assume immobility is a natural part of their life and simply give up on helping them to maintain their mobility. I’m not suggesting our older generations are likely to want to become Olympians (well you never know!), but they should be given every opportunity to keep moving, however much they can and for as long as they can. After all, wouldn’t you want the same chance afforded to you?

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook 

Restraints – The dark side of care?

"They kick, punch and bite us, what do you expect us to do?" The words of a social care worker caring for people in a residential dementia unit, explaining why they sometimes have to physically restrain their residents or request prescriptions for antipsychotics.

The use of restraints is only legal in England and Wales if it is covered by a Deprivation of Liberty Safeguards (DoLS) order which, according to recent figures released by the Health and Social Care Information Centre, have increased year-on-year since their introduction in 2009. 11,887 applications were made in 2012/13, of which 54 per cent related to people living with dementia, but as a society how do we feel about restraining people with dementia, even when it is done legally?

Restraints can involve using bedrails to keep someone in their bed, straps to tie them to a fixed object, seatbelts on chairs or locking them in a room. I’ve seen care home residents belted into wheelchairs to stop them from moving about – although one gentleman proved sufficiently strong to get to his feet and move around with the chair attached. I’ve also seen residents who have been strapped into wheelchairs injure themsevles trying to get out of the chair, with chairs ending up on top of them or arms and legs getting entangled with metal.

As far as bedrails are concerned, I saw extremely high ones used on a man in a hospital bed to try and prevent him moving around the ward, but this was entirely inappropriate since he managed to climb over them on numerous occasions and eventually hurt himself as a result. Very low-level bedrails were used on my dad’s bed in the last couple of years of his dementia, but my written consent was obtained before they were used and their purpose wasn’t as a restraint, but purely as a safety measure to ensure he couldn’t roll out of bed onto the floor (he was already immobile so wasn’t being prevented from getting out of bed by them, merely from falling during his sleep).

The use of antipsychotics was of course once commonplace in dementia care, as I wrote about here, with my dad enduring a period on this type of 'chemical cosh' medication before we managed to get it stopped. I am still regularly contacted by families who are having to cope with the trials and tribulations of having loved ones with dementia on antipsychotics, despite such prescriptions now being seen very much as an absolute last resort for only the most severe dementia symptoms when all other interventions have failed.

So how do you cope as a care worker if you are going into work every day and being kicked, punched and bitten? The answer is you potentially don’t, but more often than not that is due to a failing in the system, rather than something the person with dementia or indeed the person caring for them can control. If anything, those two individuals are the biggest losers in a system that too often resorts to factory farming our older people. A lack of funding for care has led to cutbacks in staffing levels and specialised training in many organisations, and the result could be described as a return to the dark-ages of care provision.

What is perhaps most alarming about the situation around DoLS applications isn’t the number of applications being made or indeed the number being approved, it is the persistent fear of how many restraining practices are being used illegally. Behind closed doors many ‘professionals’ are looking for a quick fix for ‘challenging behaviour’ that will take up minimum staff time but provide maximum effect in terms of containing someone who they see as a problem. For them, a DoLS order isn’t necessarily a priority, particularly as they would need to show that the restraint measure being proposed is appropriate, in the person’s best interests and is the least restrictive possible.

In my mind, depriving someone of their liberty should only be done in the most extreme cases, when all other avenues of care and support have been exhausted and the person with dementia is a direct danger to themselves or others around them. To avoid the need for restraining measures, organisations may need to implement institutional changes in the way care is provided in order to alter staff behaviour resulting from a cultural lack of understanding of dementia, with someone leading those changes who believes that there is another way to approach dementia care.

If staff have never been trained in how to cope with someone experiencing severe dementia symptoms, like aggression, confusion, walking, problems with orientation or issues with sleeping, they are likely to feel out of their depth and looking to resort to restraining methods to protect themselves and those around them. It’s a natural instinct, but it is an instinct that never needs to be seen if an organisation is capable of responding to the needs of individuals with appropriate staffing levels and by embedding a culture of person-centred care throughout their organisation.

I’m not saying that dementia is an easy disease to manage, but however hard it is to look after someone experiencing it, it is far harder for them to actually be living that experience or indeed handling the consequences of the actions of those who are charged with caring for them. Sadly most organisations are so financially squeezed that they are operating on budgets that don’t allow for either specialised training or one-to-one care provision, therefore restraints, be they physical or pharmacological, are a cheap, simple solution.

In situations where that is true, I feel a deep and profound sense of shame that we cannot respond in any other way, and even when organisations have a DoLS application approved and are acting entirely within the law, I struggle to comprehend how we cannot enshrine in law care practices that could avoid the need for restraint altogether. Idealistic maybe, but consider this. Dementia may remove someone’s ability to be proportionate in their response, but those not living with dementia cannot claim the same. In my mind we must always be proportionate in our response.

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook

Getting technical

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

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

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

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

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

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

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

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

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

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

Until next time...

You can follow me on Twitter: @bethyb1886

LIKE D4Dementia on Facebook